I normally don't post more than once a week on GoFundMe, because I'm usually always on her Facebook page, and that's just easier (feel free to join that too! www.facebook.com/groups/fighting4mickie). AND THANK YOU TO ALL OF YOU WHO ARE POSTING AND SHARING HER MAILING ADDRESS AND TO THOSE OF YOU WHO HAVE SENT HER BIRTHDAY CARDS AND SPECIAL PACKAGES! YOU HAVE NO IDEA HOW SPECIAL YOU HAVE MADE HER FEEL! THESE CARDS WILL BE ON OUR LIVING ROOM WALL FOR QUITE AWHILE, I'M SURE!!!
However, Mickie posted a status on her Facebook page today that both broke my heart but made me proud to be her mom at the same time.
"For all my friends who have abandoned me here is a little tip: Epilepsy is not contagious (you can't catch it from someone who has it)."
Unfortunately, this is true......damn near all of her friends have abandoned her over the past year or so, and if she wasn't the beautiful, mature young girl I've raised her to be, I don't know what kind of downward spiral she'd be in right now. Luckily she has a great sense of humor and a beautiful attitude to match that beautiful heart of hers!
I look at these friends, and I look at their backgrounds, and I look at what kind of "friends" they've been over the years. We've taken these so-called friends on trips to Gatlinburg, Disney, zoos, etc. And we've paid for these trips, even though we really didn't have the money (and still don't), they were our guests. These children have been sheltered, or raised to be the "mean girls", above everyone, which means that in the end, they will wind up being the ones who are alone.
So when Mickie posted that as her status tonight, it took me by surprise, but she went about it in a mature way. We don't know why these girls have drifted away from her......sure, they're becoming teenagers, they may have boyfriends (which, I'm sorry, you're a little young to be doing the boyfriend thing.....it's still supposed to be the "bros before hoes"), but whatever. Mickie was not invited to Halloween parties, pool parties, movies, etc, because people were AFRAID. Well, newsflash FRIENDS. Try being in Mickie's body. Try waking up on the floor with sores in your mouth after you've had a seizure in the middle of the night, bit your tongue and fell out of bed. Try being so upset that you can't try out for soccer or volleyball because you can't even let go of your walker without having to grab onto a wall or something close by. Try having so many doctors in so many locations, having so many tests and having your blood drawn so many times, only to have no answers time and time again about why you're slowly deteriorating. That's what my child gets to go through every day. And what kind of pictures do you see on Facebook, and on here? You see a smile on my daughter's face....because we've taught her to embrace every day as if it's going to be her last. It's just like the doctor said....."if we don't figure out what it is soon, we won't be able to reverse it".
So to all of you FRIENDS.......you don't know what you lost when you decided to abandon Mickie. She's a leader, not a follower. She's not a door mat, she's not your bitch. She's a mature, beautiful, amazing child who has been through hell to get where she is. Even having only gone to school maybe 15 half days in the past six months, her amazing homebound teacher has helped us to make sure that Mickie has kept up her honor roll. And we'll leave it at that. She'll always be a leader!!
Mickie received an AWESOME birthday package today, and it's the farthest distance travelled to get here! All the way from our wonderful friends Kerry and Callum in Australia!!!! She loves her gifts, as some of them are definitely not things we find here in the States!! Thank you so much, and we love ya'll!!!!
Mickie's birthday wall is continuing to grow, and I love seeing the smile on her face when she opens the cards! The smile stays on her face even when she's taping the cards on the wall!! We are also saving the return address labels because Mickie would like to send thank you cards to the truly thoughtful people who have helped make her 13th birthday a memorable one!
I drew her blood today before I took her to school, we needed to do a special test to send out and it can only be sent out on certain days of the week. I happen to enjoy putting needles into my daughter, ha ha!!!! But I've been doing since I was 17, so it was nothing. I pulled her neurologist into my office when he was in between patients and had him fill out a form for this test, and asked him what her diagnosis was. He said "paraneoplastic encephalomyelitis"........wow, that's comforting, isn't it?? Hoping it comes back normal......
Waiting on word from Johns Hopkins to see if they can see Mickie during the time that we'll be in Virginia in July. I hate waiting that long, but I can't afford to take off work, and because of the blood clots I had in my lungs in September, I can't drive the full 10 hours. So we'll drive halfway, crash at a hotel, then finish the rest of the trip. These are the days I wish Mickie was old enough to drive!!!!!
I think that's about it for now, I just need to start feeling better, I'm truly exhausted right now, but Mickie's last day of testing at her school is tomorrow, and I'm proud of her for finishing it. Whether she passes is a different story, but I'm proud of her for trying. As always, I love her to the moon and back!
Once again, thank you all for sending her cards, gifts and well wishes for her birthday! Feel free to share this page/her mailing address for others! PO Box 2121, Fort Oglethorpe, Georgia, 30742.
I cannot thank you all enough for helping to make Mickie's birthday a success! While we don't have money to throw her a "teen" party or buy her lavish gifts, she knows that we shower her with our love, as do our friends and family.
I am so appreciative of you all sharing her FundMe page, and her Facebook page to get people to send her birthday cards. She has received birthday cards and packages from all over the country and every times she gets a card, her smile just lights up, because she knows there is someone else out there that thinks the world of her. People realize that she is a true fighter. She may get knocked out for a round or two, but she'll always come back fighting!!
She did have one seizure over the weekend, she was in the living room talking with Matt and me, and the next thing we knew, we looked over and she was completely out of it, even her face was twitching on the left side a little bit. She slept for 13 hours, but bounced back pretty well once she woke up!
We head up to Knoxville on Thursday for her GI appointment, it should go fairly well, although given her current situation, I'm sure once again he'll refuse to do an endoscopy on her because of the risk of multiple times under anesthesia. Understandable.
For now, we're struggling to do her state testing in Georgia....if she can make it through Tues and Wednesday, she'll be done with state testing and I'll be thrilled!!!
CANNOT thank you all enough for making her feel so loved and cared for by the cards that you send!! Please feel free to share her mailing address, which is below, and if you have any questions, please feel free to contact me....otherwise, let's pray for her! I'm waiting to hear back from Johns Hopkins University to get her in!!!
Thank you to everyone that have been sending Mickie cards for her birthday! She gets so excited when she sees that the mail is for her! It completely melts my heart!! I can't believe she will be 13 in just two weeks! Meanwhile, we are in the process of getting her into Johns Hopkins University during the week that she and I will be visiting Virginia.....fingers crossed!
Step forward, kick back, step forward, knocked completely on the butt......it's a never-ending pattern lately.....which is why there are times I want to give up so much. If it wasn't for the fight that I see in Mickie's eyes and in her spirit, I'd be so ready to throw it in. She only made it to two half days at school this weeks, which brings our grand total to um, 11 half days in the past six months that she's gone to school......
Earlier in the week, I'd decided that I was going to get her to Mayo Clinic, so I got online, and was led to believe that they had a pediatric neuro-subspecialty group in Jacksonville, FL, which was about a 7 hour drive for us...not too bad. However, I got a phone call while I was seeing patients today, and apparently, they don't see pediatric neurology patients in Jacksonville. I'd have to go 14 hours north/northwest to Rochester, Minnesota......wow. Just out of curiosity, I looked online for prices. I knew all three of us couldn't go, because there's no way that both Matt and I could miss work, plus tickets, boarding, etc for everyone, so I kept it to two. It was still $650/night for three nights (which included roundtrip airfaire).......that's not money that we have lying around by any means. So something tells me unless there's a miracle bank account somewhere that I'm missing, that's a no-go there.
So next option.......Mickie and I were originally going to take 5 days and head back to Virginia this summer to visit my close friends, plus I wanted to see my mom and dad's grave. For those of you that don't know, Mickie and I packed up very little and moved from VA to GA back in 2008.......for a few reasons......we'd met Matt (who of course we met and he adopted Mickie and became her "real dad" in 2013), we had to get away from my ex, who was trying to find us and take Mickie (we had his rights terminated when Matt adopted her), and the cost of living was so much better down here (along with the Southern charm/hospitality). But being so far away has made me homesick for the past 7 years. As bad as it sounds, Georgia may never feel like my real home. Virginia will always be my real home.....it's the back roads, the front roads, the side roads that I know and I'll never forget.
I'm researching Johns Hopkins Hospital, which is in Maryland. So while we're Virginia visiting in July, I'm going to try to get Mickie an appointment in Baltimore while we're up there. I don't want to say we're running out of options, but the doctors words still keep ringing in my head, "If we don't find out what it is soon, we won't be able to reverse it." It hits so hard when it's your own child.
Meanwhile, we're busting our butts to keep ourselves financially afloat. Between doctors, medicines, tests, imaging, etc, it's been so difficult. Her neurologist came in the office today and I sat down with him in between seeing my patients. Mickie's been mixing up her words when she's writing simple paragraphs, but not realizing how it sounds, and with math, she's adding when she's subtracting, and vice versa. Sure, he had a few choice four-letter words (yeah, he's down to Earth lol), but he's extremely frustrated. He suggested trying her on Phenobarbitol, but I just don't like that medication, so we're waiting for some labwork to come back before we figure out the next step. Here are the diagnoses we have NOT ruled out yet. (we're pretty sure we have ruled out ALS because she still has good reflexes, but they are going to check those again in six months):
She has state testing next week, and for the first time, I am NOT going to worry about how she does on these tests.....at this point, even if she has C's now on her report card, I'm happy she has those grades after all she's been through over the past six months. I'm proud of her in more ways you can imagine. She's beautiful, smart, funny, ambitious, smartass-y (you have no idea lol), genuine, and a true friend to those who are true friends to her.
Wow, I feel like I'm writing a blog lol. Either way, I just need to do some research and figure out what the best approach is going to be for Mickie and where she will get the best care while we're getting the answers that we need. As I said, I'm exhausted. This whole week has been exhausting. I can't turn my brain off, I'm not getting to sleep until after 4am, waking up at 6:30, trying to stay focused at work seeing patients all day, then coming home and doing more medical research on my own, trying to see if I've missed one little thing to explain why my child can't walk without a walker.........
I figured I'd show you a few pics of Mickie and Moonshine......they just have the love for each other lol......Will keep you posted if we figure out what we're going to do! Have a great weekend!
Thank you so much to our wonderful friends, family and supporters (who are becoming our fast friends) for sending Mickie birthday cards! Please share a status on your Facebook or Twitter account or even email to let others know that if they can spare a few minutes and a stamp, they would make her birthday so much more special! It has literally been hell for her these last two years---in 2013, she has no recollection of her entire birthday trip, which we took to Disney World....she had just started having seizures and we didn't know what was going on. One day we'll go back and she'll remember! In 2014, we took her to the waterpark hotel....after 12 hours, we had to rush her back home and put her in the hospital for severe side effects of a new seizure medication. She was so bad we actually had to wheel her out to the car on a luggage cart......this year???? My baby can't even walk long enough to do anything worthwhile, which breaks my heart, so I'm hoping we can get some wonderful people out there to help let her know that she's thought of and loved on her birthday!!!
It's been a very rough week, one that I don't want to keep repeating. It had been about two weeks since her last seizure, at least that I knew of. So she finally went back to school on Monday, for four hours, and did okay. However, Tuesday, early morning, she had a seizure, bit her lower lip and wet the bed. Didn't wake up until almost 11am. She was still half out of it by 2pm. Wednesday I took her to school for another four hours, and Matt took her back at the end of the day to get some tutoring with her amazing homebound teacher, who's become like family to us! However, we are starting to notice that simple things that she writes doesn't make sense, she'll mix words up, her math is getting worse. She's missing simple problems, adding when she should be subtracting, and vice versa. She's slowly declining and I'm almost at a loss of what to do. She's lost friends......these friends who I thought would stick by her and they've just abandoned her like the rest of them. I can only hope that one day she'll bounce back and show them all that she didn't need them in the first place!
We've begun the process of contacting Mayo Clinic in Jacksonville, Florida for further evaluation. They like taking on "peculiar" cases? Well, I've got a whopper for them!!!
Hopefully, we'll be able to figure something out with her. In the meantime, I would love if you all could help me out and fill her life and heart with birthday cards and warm thoughts! I want to see that genuine smile pop up on her face more often than it has been!!! Thank you all so much again!!!! Don't forget, we update frequently on her Facebook site, www.facebook.com/groups/fighting4mickie It is a closed group, but just request to join and we'll accept!! ;-)
I wanted to take a minute to say thank you to the wonderful people who have been nice enough to share her special Facebook page and our statuses, asking to help make Mickie's 13th birthday a little brighter.....She will be 13 on April 30, and has only made it to school about 9 days (only half days though) since mid-October. It's so hard for her, because she gets so exhausted after walking for an hour or so.
Her so-called friends that used to be her friends that texted, messaged, and called her.....they must've dropped off the face of the earth....and that's fine, because it means they weren't real friends. Mickie has already felt so humbled that so many people think about her, and want her to get well. That's pretty much her birthday wish--to be able to walk again. It really breaks my heart that a 13 year old's wish can't be something like "wanting a boyfriend" or "wanting a computer".....hers is to walk......I can only hope.
So if you all can help us out to make Mickie's Birthday super special, if you can share this page and/or this status (if you can't share the status, you can copy and paste it). Her special mailing address is Miss Mickie McCoy, PO Box 2121, Fort Oglethorpe, GA 30742. She did have her ultrasound today, and aside from a few follicles on her ovaries, it did look okay, so that's one more diagnosis we can rule out.....I had her blood drawn today too, and that should be in by Wednesday next week. Right now we're waiting for the thunderstorms to get here, with 60mph winds and quarter sized hail. So yup, Mick and I are camping in the living room!!! ;-) I hope you all have an amazing weekend and a very Happy Easter!!! Daddy went all over Chattanooga looking for that one kind of basket that Mickie wanted....and while she and I were at the dentist today, he FOUND IT!!! He pulled into the parking lot as we were leaving and the smile on Mickie's face just melted our hearts!
While some people may think she's spoiled (no we don't have a lot of money, we just have to live cheap and sacrifice things that we want), I have to think that if she keeps going the way she is, we may not be able to spoil her forever. But.....I don't want to think about that right now, I want to enjoy the Easter with my family and get blown away by the winds!!! Here are her pictures of items she's received in her special PO Box so far for her birthday!!! You all are absolutely amazing!!!!! www.facebook.com/groups/fighting4mickie
We are finally home!! What a day!! I went into work at 7:30 this morning to get some stuff done, saw some patients, and was running late leaving to get Mickie. But we hauled butt to Nashville, stopping only to grab a soda, and arrived with 3 minutes to spare! They took us back about 5 minutes after we signed in, and the geneticist came in, sat down, looked at us and sighed. We went over what happened, and how I told him I was furious about what the neurologist at Nashville said, and how I was not happy with how he said her symptoms were "psychogenic" and there wasn't anything wrong with her. Well, Dr. P basically said that he feels sorry for that doc (and his license). Yup, he's a moron. So we chatted, and I told him how her head has started shaking when she walks, and I really don't know what to do. Dr. P took her out in the hall (without her walker), and walked behind her while I walked next to him. Sure enough, you could see her legs and the back of her head just shaking away.......and the tear-jerker was when Dr. P put his arm around me and said, "She's getting bad. We need to stop it before we can't change it anymore". I wanted so much to cry, but you know what? I didn't have the strength to cry. Mickie's spirit is so amazingly bright and humorous through all of this, and she's my true inspiration, not the other way around. She may be 1/2" shorter than me, but she's the one I look up to.
We got back into the exam room, and we're trying to explore our options. We may have to repeat her MRI to focus on her cerebellum to see if there's any abnormalities that were missed before, we may need to do a lumbar puncture to rule out Multiple Sclerosis, and we may need to do a muscle biopsy. But for now, we're trying to find answers for the seizures and the walking if we can. We went through everything, what we really need, and what we could put off a bit......after going through everything, it came up to about $11,000 worth of blood tests.....I can only hope that insurance pics up quite a bit of it, because we are so dirt poor right now, it's not even funny......but as the doc said, we have to find out what's going on so we can try to stop it before we can no longer stop it. Otherwise, she's going to continue getting worse and deteriorating......Once again, I couldn't cry......so we both held our heads up, she got her blood drawn, and we headed to the car......I was honestly too upset to go to the Rainforest Cafe, which is usually a tradition for us when we go to Nashville......so we headed to Five Below (cause we have yet to get a store in Chattanooga) to get her Easter Basket stuff, and finally headed home.......
It's just a matter of what remains to be seen and we have to take it as it is. I've raised her well enough where she knows we're doing everything we can to get her back the way she used to be, but at the same time, she's understanding that she may not get back that way again. It really breaks my heart because a year ago, she was outside every night, playing with friends, going on sleepovers, and having fun in martial arts.......now, her friends have abandoned her (I'm over those friends because they're more worried about themselves than other people....and if Mickie gets better, I'll remember which friends treated her like shit....pardon the French), she can't do martial arts, can't try out for any school sports teams, and struggles after even an hour of using her walker.......My heart truly breaks for her, but as long as she still has her spirit and sense of humor, I'm going to keep her!!!
That's about it for now, Mickie will come with me to work on Friday because they will be doing a pelvic ultrasound on her.....and luckily they are not doing it "internally", cause I raised cain about that, so they are just using the ultrasound on her abdomen......hopefully they won't find anything, but on the other hand, hopefully they will. Okay, I'm going to bed, I'm exhausted, but here are a few pictures from today. Good night, and thanks for the prayers and well wishes today...
It's weekends like these that make me glad I'm her mom......Mickie had Sydney over for a sleepover on Friday night, cause those two just love each other to death (and then some), and she's just like my 2nd daughter......I just can't say no to them, so within a few hours, my kitchen floor had paint on it, my trash can had painted footprints, and two little girls were giggling hysterically. Sounded good to me! However, at 11:30, Syd wasn't feeling well and had to go home, but it's not like she won't be back!
Mickie and I woke up about 9am yesterday and headed to the aquarium. We'd gotten ticket from the radio station back in November and they were due to expire on Tuesday......so may as well use them on a gorgeous day!! Grabbed her walker, the tickets, my camera, and headed out for some fun! This was the longest she's been up and walking around in quite awhile! We were gone from 9:30a-3:00pm, and yes, she was completely exhausted when we got home!
The aquarium was so much fun though! It's two huge buildings, each building has four floors, and they are just filled with the most beautiful creatures! We even saw scuba divers in the water! Each building took almost an hour and a half to walk through, and when we left, of course she had to get a "souvenir" from the gift shop......her souvenirs seem to always consist of stuffed animals.....go figure!
When we came out of the aquarium, there were vendors set up under tents everywhere......LOVE IT!!! We got new collars for the dog and cat....Bristol has a Batman collar, except it's hot pink/white; Moonshine has a Batman collar too.....they look so adorable! We also got some Cracklin Candles that sound and smell absolutely amazing!! I even got their business card too so I can order more online!
We then met Roxi, one of my beautiful friends, for lunch downtown at Noodles N Company......oh wow, it was absolutely amazing!! We talked and laughed and just had a relaxing time.....I really needed that too! By the time lunch was over, Mickie looked ready to zonk out! So we headed to the pharmacy to get her meds and came on home.......
She woke up this morning with a migraine, and she still looks very tired, so she's been chilling on the couch all day. I was very proud of her for getting out and walking around yesterday and not complaining (until after lol).
She's on spring break from school this week, so on Tuesday, I will be picking her up at 11:45am once I've finished seeing patients to take her to Vanderbilt to see the geneticist. I hope we can put this all behind us one day, but something tells me she's going to keep us on our toes for quite awhile.
I do have her scheduled for her ultrasound of her ovaries on Friday after my dentist appointment. I hope they don't find anything, but on another hand, I hope they do so we can have some answers. I'm learning not to expect anything anymore.......sad, huh? But at the same time, I don't want her raised to just "accept and move on". She was taught to be a fighter and that's what she's become. I put her in martial arts in 2011, and they teach about honor, courtesy, integrity, self-control, community, strength, humility, knowledge........and also perserverance. My girl has demonstrated all of those, and she's not giving up anytime soon! For now, she's going to fight when she can and accept when she can't. I wouldn't. trade this baby girl for anything in the world!
Here are some pics from this weekend that I just love! Hope you all have a fantastic week, enjoy the weather and hug your little one(s) every single day!!!!
I have a BIG favor to ask.....and if you could share this page or this favor, I'd be so grateful! Mickie's birthday is in one month and she will finally be 13 years old!!!! However, she's only been in school about 9 days in the past 5 months because of her medical problems. She's lost friends, unable to make new ones, the friends she thought she had don't call, text or come over anymore, and it's left her extremely lonely. If each person could send her a birthday card to her special box, she would be so cheered up!! All I ask is that you spare one card, one envelope and a .49 stamp to make her smile on her special day!!! Her mailing address is Mickie McCoy, PO Box 2121, Fort Oglethorpe, GA 30742.
Nothing like getting dealt another unexpected blow while at another doctor's office......and I'm just so tired of fighting........It's been such a long day of nothing but running all over. I had to get my oil changed before we head to Nashville next week, so we were at Wal-Mart at 8am this morning......why was I the first car there and it still took over 1.5 hours???
Anyway, that's done, so then we head over to the allergist's office......luckily Mickie's been doing amazingly well with her asthma. She hasn't had to use her inhaler or her nebulizer in almost a year now, but her allergies are starting to get bad again, so we need to add her Singulair back into her regimen. We haven't been able to get her allergy shots done because of the walking, so we're going to improvise for now. But he's happy with how she's doing (breathing wise) and of course he wants us to keep him posted on what they find out about the walking.
That took a little longer than I thought, so we hauled ass to my work. I can only schedule appointments when I don't have any patients unless it's a major emergency, but for the most part, the boss is really good about it. When we got to work, we signed her in to see the 2nd doc of the day, which was her neurologist. I got some work done while we waited for him, she brought her stamps and decided to stamp the entire exam table. Gotta love her! Then she spent time drawing, coloring, painting, etc. So when he finally came into the exam room, we had a nice talk, he had Mickie walk for him, and once again, he's left scratching his head. I can understand, a lot of people are at a loss as to what's going on. The worst part is that Mickie ended up getting all of her hormonal crap this week for the first time, so now we're waiting for her seizures to get worse. And we've addressed that too, because since her seizures seem to be happening mostly at night time, we're going to increase her Keppra yet again to 750mg in the morning and 2250mg at night. Seems like a lot, but we still don't have a reign on them yet. We'd taken her off almost all of her medications except for 3, hoping that her problems may have been medication induced----not that easy.
So now that we're into all the hormonal phases now, she's had a very rough week. It hasn't been the best first experience for her, and hopefully it will get easier. However, the neuro wants her to get an ultrasound of her ovaries to check for tumors, or they're called "teratomas". He's also doing another round of labwork to check for any indications of what's called paraneoplastic syndrome. We can be on a damn scavenger hunt, but as I told him today, I can't keep seeing her like this, I'm at the point where I need to be okay with doing anything to find out what's going on. So Matt is gonna bring her back up to my work on Monday before he goes to work and we'll get her labs done then. Wooooo.......... I got a little more work done, then we headed to our THIRD appointment.......aaauuuggghhhhhhh!!! We're gonna keep an eye on her, she can take some B12 and D3 for the energy and if she has problems next time, then we'll have to dicuss birth control pills to calm her down......no, no sex for her thank you very much!! ;-)
Now we're back home.......I'm tired from being tired, I'm constantly feeling lost as if I will never fix her. Physically, she's broken.....mentally, she's perfect. I can't ask for a better child. She's basically been dealt a shit hand of cards and she's done what she could with them. I couldn't be more proud of her!
Hopefully this weekend we can put everything on hold. Matt is up in Knoxville at his dad's house for the weekend (-_-, his dad doesn't like me or Mickie, primarily because Mickie's "not Matt's real daughter", but that's a whole nother bigot story). So, stupid me, I can't enjoy some quiet time, I have to let Mickie invite her BFF over so I can have two girls up my butt for 24+ hours......but we have tickets that I've kept in my wallet forever to the aquarium and that's exactly where we're going on Saturday morning! Although it's going to be only 50 degrees outside, we just need to get away and have some fun!
Tuesday we head over to Vanderbilt to see the geneticist. He got Mickie an appointment over there with a neuro-specialist, but they can't see her until August. However, that doesn't fly with me, so I'm taking her records to see if they can see her sooner. Either way, I'm sure they'll be doing a genetic panel on her........I feel like no matter what we do, we're always going to fall behind when we try to step ahead. I'm exhausted at work, I come home and I'm literally useless. But I can't sleep at night because I just can't turn my brain off. I'm always thinking about what's happened, what's going to happen, what scenerios I can play out and which one will work the best, then match them up.
I think that's it. Will keep you all posted. If you all can continue to share her pages, I'd appreciate it. We've stalled a little on the fundraising, but I haven't been feeling it too much either. Once again, the exhaustion is just catching up. Thank you all so much for your continued support, thoughts and prayers. The messages, texts, calls and notes are amazingly thoughtful and you have no idea how much I appreciate them.
Here are a few pictures of my lovely Mickie and her artistic projects. She's now painting golf balls like little critters and she's doing a great job!! We may even send them to our donors, which I think will be great!! Have a great weekend!
It's been about a week since I posted an actual update and honestly.......I'm tired.....I'm exhausted......there have been times that I've wanted to just throw in the towel. But I raised my kid to keep fighting no matter what, so I need to practice what I preach, no matter how difficult it is to face.......
Her geneticist at Vanderbilt has taken care of the referral to a specialist who can do the video EEG. However, they can't get her in until August......you would think in an office with 11 doctors, they would have a sooner appointment, right?? Yeah, no. So I had them put her on a cancellation list in the meantime. We'll have to see how that goes. I just know that I'm not in the mood to spend 3-5 days locked in a room with her while they have wires coming out of her head for the EEG. Ugh.....I'll probably kill her before we leave the room!
Meanwhile, she has two appointments next week, one with the allergist and one with the local neurologist, both on the same day. I want to see if there's anything we need to do or can do while we're waiting for the specialist. Then we have her followup in Knoxville at the GI next month. I'm surprised that she's actually done so well with her EoE since she's been out of school, so hopefully we can avoid the endoscopy again. Fingers crossed!
It's so difficult, I want her to get into school as much as possible, but the girl cannot stay awake!! She'll go to bed by 9pm, and she'll sleep until almost noon every day, sometimes later! From what I can tell, she hasn't had a seizure since Monday, but she's just so exhausted all the time, I can't pinpoint what to adjust medication wise. So I guess we're putting that on our checklist of things to talk about with the doc next week.
We've been dealing with these seizures for exactly two years now. Matt and I are exhausted. Sure, we have our fights, and it's difficult because we want to fix her, and we're just at a standstill to where we feel so helpless. She's lost friends, the people we thought were her friends don't contact her to see how she's doing, and it's hard to make friends from your couch.
We're still trying to be as optimistic as possible. Mickie's best friend (my 2nd daughter lol) is going to come over next Friday for a girls' weekend while Matt is hanging at his dad's house. We have some tickets to the aquarium, so hopefully she'll have the energy to have some fun! And I'll have the energy to put up with two wild girls!!!
Thank you to all that have stayed with us for the updates and said your prayers and thought your happy thoughts. We are still working on finishing raising money for the dog, which hopefully should only be about another six months or so......it would be perfect if we could CURE her and not have a need for the dog, but this is 2nd best, so we'll take it.
Stress really does an unbelievable amount to your mind and your body......I've eaten twice since Saturday, and neither has been a full meal because I just literally feel so sick. So I drown myself in energy water and ignore hearing my stomach eating itself. After about 3 days, I got used to it. I'm anxious about tomorrow......anxious because Mickie's had at least 3 seizures in the past four days alone, I'm afraid we may not know why she's not walking, or if she'll ever walk normally again (without a walker), and afraid we won't be able to control her seizures and she's going to go into grand mal sooner than expected.
I am putting myself into home, work, rinse and repeat. There isn't absolutely anything I wouldn't do for my daughter. I fought 9 months not to lose her, staying in bed the entire time, walking in and finding my mom on the floor when I was only 7 weeks pregnant, having to bury her at 20 years old, losing the only parent I've ever known, vowing not to let my daughter grow up in a single parent household like I did....then it happens......and I feel as if I've failed her.......now she'll be 13 years old in just 6 weeks and facing a possible diagnosis tomorrow that may not let her see the end of her teenage years is just enough to push me over the edge. Yeah, I think too much......can't help it........
We'll head out to Atlanta around 6am tomorrow......ew......I hate getting up that damn early......but it's okay. I almost just want to get this over with....do I want answers, or do I want to be left hanging for awhile longer? Can't stop the inevitable, so I'm heading to bed since my offspring is asleep on the couch next to me.......will keep you all posted tomorrow, but we could use some good prayers and happy thoughts......
I was happy that Mickie got to go to school today.....I think she's been maybe 9 days in the past 5 months, and she could only make it four hours before she had to start shocking herself and Daddy had to go pick her up.....she was out like a light and slept for a good while once they got home and she's out again......sometimes sleep is all she can get.........g'nite.
It's hard to believe we're only about six months away from Mickie's seizure dog becoming a part of our family!!! And for some reason, I'm the one who's a bundle of nerves! I wonder if Mickie and the dog will accept each other, I wonder if Bristol and the dog will get along, if Moonshine and the dog will get along, just those little things that add up. But I also think of how hard we've worked our butts off over the past 10 months raising this INSANE amount of money to get this amazingly trained animal to provide her comfort and assistance so that she doesn't feel so alone. And you know what?? It's all worth it! I wouldn't change a thing! We still have a little ways to go, and her fund site as well as her PO Box is still open. ;-)
It's been a crazy week. We have kept her home because of a bad sinus infection (yeah Augmentin) and a possible staph infection (yeah Augmentin again), so she came to work with me on Monday and my co-workers love her because she makes them artistic things to hang on the walls at the office. I ended up at two different doctors this week becausei I started having severe pain in my Rt side of my stomach, so we're assuming it's an ovarian cyst that hasn't ruptured. But now I'm having the pain in my back, which is making me wonder, am I having another kidney stone, or do I just have the ovarian cyst? It's just about staying comfortable right now and waiting it out. The gyn wanted to do surgery on me yesterday, but we couldn't risk it because of the blood thinners I'm on, and no other doctors will touch me. Good thing or bad thing?? lol
So we're gonna try to send Mickie back to school this week. I haven't noticed any daytime seizures, but hers do seem to be more on the nocturnal side. She'll sleep through her LOUD alarm to the point that I'll turn it off after 20 minutes and let her sleep, because I know that she's had one, and there's no sense in trying to keep her awake. She's also bitten the inside of her mouth as well.
Other than that, she's still having difficulty walking, so we have our lovely walker, That normally stays in my car . She still hugs the wall when she walks in the house, but I can't really say if she's gotten better or worse. It's hard to tell when I look at her day in and day out, ya know? But we have our appointment with the neurologist(s) on Thursday morning at Emory, and I'm severely and sincerely hoping to get some answers as to what's going on with my baby. Even after taking her off all meds except for two, I can't tell a difference, but we tried!
Will keep you posted, until then, have a teriffic weekend! Enjoy this insane weather and don't forget to move your clocks ahead on Sunday !!!
Hi everyone its me, Mickie!! I write on here sometimes because I just want to say hi to everyone by myself. So, um.....hi!!!
I made some funky ilttle suncatchers today, and I think my supporters will like them. They are different from the ones I've been making before, but since I don't paint them, they won't fade!
I haven't been able to go to school this week because I have a really bad sinus infection. I might have a staph infection too so we are using the same medication to treat both problems and get fixed up! Hopefully I can go back to school next week!
I did go to work with my mom today because she's been hurting really bad in her ovary (no idea) so I'm trying to help her out. And I'm doing a great job!
I'll probably go back tomorrow to help her out, then go to the store. My mom is taking me to Emory in Atlanta next Thursday so they can try to find out what's wrong with my legs. I just want to go back to martial arts and hang out with my friends. My "friends" don't even feel like my friends anymore. They don't text or call or send any messages. I mean, it's not like I can help my issues. I'd like to have my friends back and I feel like the only friend I have is Syd.....she makes me want to change to her school sometimes but you know what they say about sisters. You can't spend too much time together or you'll get annoyed with each other! lol
I guess that's it, my mom is making me go to bed now so I hop everyone has a good night/weekend! I will post an update later! Good night!!!
It's days like we had this week that completely make my heart melt when I see the smile on Mickie's face. Of course school is closed, we can't prevent that, and I'm all for the safety of the kids. But for once, I got to stay home on Thursday because we cancelled our patients, knowing fully well that we were going to have a good snow. Sure enough, it started at 4:30pm and kept going all the way through 3am the next morning. It was BEAUTIFUL!! Mickie and Lona and another neighborhood girl, Jada, went out to play in front of our house and just seeing Mickie outside with her face lit up made my night. It was okay that she crawled, it was okay that the girls let Mickie lean on them, but she was outside, socializing,.....playing!! I didn't let her outside for too long because she got tired pretty quickly, so we crashed in the living room that night for our little sleepover.
At 4:30am the next morning, we woke up and decided that she and I were gonna go outside and play in the snow. We bundled up, donning our cute little hats, and set out with our sleds. Best 1/2 hour I've had in a long time! Snow stopped, temperature was normal for this time of year, and I couldn't ask for anything bettter.
Our t-shirt sale has ended, so now we're trying to think of other ways we can finish raising the money.....mind you, it's only about $3,500 more, but when you have nothing but bills, bills, bills, that amount because further and further out of reach. We're waiting patiently because good things come to those who wait endlessly!
Hopefully it will be back to school next week for her! Luckily my boss is out of town, and I have a lot of desisions to consider during thi time. on a lot of things thaill affecf a lot of people.
Regardless, my baby girl will always be my number in....she's my first thought in the morning, my last thought at night and my every thought in between. I don't know what I would do without her.
Also, if you all are interested, we still have her PO Box set up, and shewould love to receive letters and cards from people, especially kids her own age. I think that would make her feel so much better since she can't spend a lot of time at school anymore. Her PO Box is 2121, Fort Oglethorpe, GA 30742. We'd really appreciate it and just seeing a smile on her face as often as possible is what we need!
It hasn't been easy over the past 4 years or so......Mickie grew up like any normal child......a sinus infection here and there, tonsillitis every now and then, but she was such a happy, beautiful little girl. So when they diagnosed her with Cystic Fibrosis in November 2007, it really floored us. She was requiring chest therapy when she was sick, and had to take vitamins to make up for what she became deficient in.
When we moved down here to Georgia from Virginia, it took another two years to remove that diagnosis, but the doctors still weren't sure what she had, because her symptoms matched CF so well. Even today they still question if she has CF. Then came the nosebleeds, the memory loss, and the seizures (which we didn't know what they were at the time). And it's all plummetted from there.
But I've decided to experiment on my child. Yup, experiment. That means, I've dropped all doctors except the necessary ones, and I've dropped all of her medications except for 3. It's been two weeks and I don't notice a difference in her walking yet. She's still averaging at least one seizure a week, in which she usually sleeps until noon.
Either way, I don't know what I'd do without her. She is my only child, my rock and my world. She makes me laugh, she makes me cry, she makes me want to choke the living hell out of her!! She loves to cook and bake random things and we let her have her freedom....why? Because Matt and I know that she's responsible and mature. Unlike any other kid, she's probably had to do a lot more growing up over the past year or two than most kids would. But as much hurt as she goes through and as much as I want to take it away, she's gaining experience that no on will ever get to say they have.
We're in the last two days of Mickie's fundraiser for her t-shirts!! So please get yours now and/or share the page with your family and friends!! This would be great for the little karate kid in your life, all while fighting a great cause and supporting Mickie!! www.booster.com/a_dog_4_mickie
Mickie's done well this week, they only had school one day, and she went for about four hours (yup, so proud!). I think it's been about a week since her last seizure (that we know of), so that's really big news because she hasn't gone this long without one in almost three months! She's now been off all of her meds except for 2-3 for 10 days now, yet I see no improvement in her walking and she's pretty tired so I may have to add her Vitamin D back into her regimen.
We had some great snow today, enough to wear I (grudgingly) allowed her to hobble outside and go sledding for about 1/2 hour. I really don't want her to be locked in the house when this is probably the last snow we're going to get. So she went sledding, crawled back up the hill with the sled in tow, then repeated it again.....no complaints because the smile on her face was enough to tell me that she was feeling like a kid again! It just melted my heart to see her having so much fun, even if she did have to crawl!
I think her next appointment is at Emory in Atlanta on the 12th. Luckily this office has 2 pediatric neurologists---one is an epileptologist (specializes in seizure disorders) and the other specializes in movement disorders. And surprise, surprise, they are both going to "tag team" her the same day because she's so complicated....which means running all over town picking up medical records and discs of EEGs and discs of MRIs once again.......still never heard from the quack neurologist at Vanderbilt who said he would call me once we looked over her records and discs.......still money wasted--not happy, because that is seriously money that we do NOT have.........
Meanwhile, I'm listening to her sound asleep on the couch, snoring away with the dog at her feet and the cat under her blanket. I just watch her and wonder how in the world she can go through everything she's going through and still be the fighter that she is. I remember a few months ago, she posted something on her Facebook wall that brought tears to my eyes, "I may look good on the outside, but you have no idea what I go through on the inside"..........
It's been a rough week........I'd leave it at that, but I rarely do. Mickie's neurologist got to the office a tad early yesterday, so I walked in his office, said "Chief, we got a problem", and we spent about 20 minutes talking about what had happened at Vandy. Needless to say, he's not happy about what happened. He's all for Mickie going to Emory instead and we need to keep a closer eye on her seizures now that they're becoming more frequent and closer together. It really bugged me because I told him that there's no way she could be under stress, she's only 12 years old, she's not into boys, she doesn't do drugs, etc. Being the "joker" that he is, he says, "maybe she should be". So of course I asked which one he preferred and I'd get right on that!
Meanwhile, that so-called neurologist that we saw on Tuesday never called me after he was supposed to review her MRI and EEG plus her records, so I'm going to have to brush that off as money wasted. It's just a matter of waiting another 4 weeks to find out what's going on..... .The nurse for the genetecist at Vanderbilt called today, unfortunately he's out of the office until Monday, but she said he was not going to be happy about the situation either.....well duh......so I'm sure I'll be facing more phone calls then. She at least made it to school, um......2 days this week. Works for me!
We also made a BIG decision to cut down a tad on her medications.....okay, a little more than a tad. So she has gone from 17 medicines a day to...........2!!!!! That's right, only 2! However, even being off of them for 3 days, she's already more tired and she's had to use her VNS magnet (something she hasn't had to do since before she stopped walking). So it's going to be a challenege to figure out what we should add back and what she can try to do without. I'm trying to watch her at different times of the day to see if her walking is any better or worse, but I don't think I can tell much of a difference. She seems to function now that it's been so long, but I'm going to try to get her out this weekend for a little bit and work on those legs........while we're waiting for the snow! I'm hoping that she can get out in the snow and play, but we're not holding our breath. It's those little things that she has to miss out on that hurt the most.
I'm trying to find something she can do for her birthday this year......but we seem to be developing a habit of ruining birthdays. In 2013, she'd just started having her seizures and we didn't know it at the time. We took her and one of her friends to Disney World for 3 days (luckily Mickie's birthday falls after tax time, so if we can do it, we do it!). However, Mickie has no recollection of the trip at all because she'd had seizures. The only thing we can do is show her pictures......last year, we took her to the waterpark hotel in Gatlinburg for her birthday. She was there for about 15 hours and we ended up having to rush her back home and to the hospital because she was having stroke-like symptoms. She was so bad we actually had to take her from the room to the car on the luggage cart---that was a really bad weekend. This year? Yeah, I'm scared of her birthday this year, but she's going to be 13 years old and I really want to do something special. The waterpark hotel had given us a voucher to use to make up the night that we missed, but it expires at the end of May. Either we haven't had the money to go up there, or Mickie's been sick/handicapped and couldn't go. She really wants to go back up there though, so it's going to take a lot of thinking. I want to be able to take our "other" little daughter as well, because I love seeing them together.
ONLY TEN DAYS LEFT OF MICKIE'S FUNDRAISER!!! SHE WORKED VERY HARD TO DESIGN THIS T-SHIRT, PUTTING SOMETHING SHE LOVES WITH SOMETHING SHE WANTS TO PERSONALLY BEAT!! THESE SHIRTS COME IN LONG SLEEVE AND SHORT SLEEVE AND WILL BE SHIPPED ONCE THE FUNDRAISER ENDS!!! www.booster.com/a_dog_4_mickie For our overseas friends, please feel free to message me and I'll send you our address so you can have the shirts shipped to our house and we'll ship them to you!! Thank you again for supporting Mickie!!! ;-)
I really can't say enough what a difficult couple of months it's been on us--not just Mickie, but on the family as a whole. I thought we were going to get answers when I got recommendations to get her in with this pediatric neuro-specialist. However, we drove all the way to Vanderbilt yesterday for him to look at my daughter, have her walk four steps and tell her it's all in her head....aka "psychogenic".
Yes.....I was LIVID!!!! I'm sorry, my kid can't fake something that good for that long. But to sit there and listen to the doctor tell you and your child that to her face, it was extremely insulting!! He goes on to say that she was probably under stress because she's so ambitious and struggles to keep her grades up and the stress is making her have a physical reaction......um....I don't think so. He says "well, if she was a loser and didn't have any stress, I may have a reason to do a test."......WHAT?!?!?!?! I've worked in neurology for almost 7 years now, and I can recognize things like this......I'm even angry again just writing about it!
We move on to her seizures. For some reason he wants to do a 3-day video EEG....I tried to explain to him that she's already had THREE EEG's read, that were ALL abnormal, read by TWO different neurologists. I don't think there's any reason to do yet another one......needless to say, absolutely nothing was accomplished, we got no answers, and my child still can't walk without a walker. It's distressing, seriously.
I'm still furious....I'm sorry, but I think I have good reason to be. How would you feel if your child had a problem going on this long and you just wanted to fix them.....so you take them to a supposed terrific doctor, only for them to look at you and your child like idiots and say "oh, it's psychogenic"........BITE ME!! Stress?? My kid is 12.....she's been chilling on the couch catching up on shows and coloring for the past four months.......please tell me where she has stress!!!!! You want stress?? Jump into my shoes for a week!!! We'll show you stress!! GRRRRRRRR!!!
Anyways, luckily I still have connections, so as soon as I got to work this morning, I called Emory University in Atlanta......the only place where she hasn't had a doctor in awhile lol. There is an office with two doctors---one is a pediatric neurologist that specializes in seizure disorders and the other is a pediatric neurologist that specializes in movement disorders.......so I got her in on 3/12 and these two doctors are BOTH going to see her to get to the bottom of it. Meanwhile, I'm trying to find the money to get this special exercise equipment that will help to strengthen her legs at home........it's unbelievably difficult lately.......
I feel so lost and disappointed.......he did the same thing that I fear other people have done and will do. He looked at her and said, "you have so many doctors and you're on so many medicines but you look just fine".............why would you say that??? You can't see the whole in her heart, you can't see her destroyed esophagus, you can't see the cyst in her brain, you can't see the seizures, so I guess she's supposed to look ugly or pale with dark circles under her eyes and sickly? Sorry she didn't live "down" to your expectations!!
Okay, rant.....done.......it's funny, I was talking to one of my sweetheart patients today, and I was telling about my mom dying on the day that she was supposed to go with me to my first sonogram to see Mickie on the monitor......I honestly feel like my mom died so that Mickie could be born. It's like the phrase, "God giveth, God taketh"......I gained and I lost in the same day, but I feel like I'm paying the price for it. No child should have to go through what she does. Even this morning, her alarm was set for 6:15. At 6:45, I go into her room, the alarm was still blaring and she was sound asleep in her bed. I couldn't even waker her up. And I know that's usually a sign that she probably had a seizure during the night. Sure enough, she didn't wake up until almost 11am today. But if she doesn't "sleep it off", she could be worse.
The main thing is that after the doctor's appointment, we tried to brush it off and have fun. We took Syd with us, who is like my 2nd daughter and Mickie's best friend. This little girl would tell Mickie to leave her walker in the car because she wanted Mickie to lean on her. And it really brings tears to my eyes when I think about these two girls together, because there's no bias, no hatred, and complete love, laughter, and smiles. I love them so much, even more every time they're together. So I took them to Rainforest Cafe afterwards to try to forget about the appointment, and they had such a great time!! Sure, we didn't get home until 10pm, thanks to traffic (ugh), but the 2nd half of the day was worth it!
Only a few more days to purchase the shirt that was designed by Mickie to support her seizure dog! We've only sold 12 so far, so even if you can't buy one, please forward the link to family and friends! Thank you so much! Not much else to report until after Tuesday when we take her to Nashville to see the neuro-specialist.
I feel like I'm becoming slightly scatterbrained as it gets closer to next Tuesday. Of course I'm nervous because there's five different diagnoses we're looking at, and they all involve invasive testing/confirmation. Muscle biopsies, lumbar punctures, nerve testing.....not something I want her to go through, but if we can figure out what's up so we can get her walking again, we're gonna have to deal with it.........
She's been doing okay, she's had at least 10 seizures in January. I'm trying to keep track of them as much as possible, but it's not easy. I'd rather her use her magnet a few times a day to "wake herself up", but she's a stubborn lil thing......go figure...........I have also gotten her an appointment with the "female" doctor next Thursday because we need to know where we stand with her hormones. We've been told that as her "hormones" change, she will eventually go into grand mal seizures. I know she's progressing already with some symptoms she's having when she's having the seizures, and it's been suggested that I actually have her cycles stopped before they start, but I don't think I want to do that. I want to know all of my options before I make any decisions that can affect her chance at fertility in the future. It's just so hard to decide what to do.........something I'll have to address with the neuro-specialist on Tuesday, then follow up on Thursday with the "girly" doctor...........
And OMG I'm tearing the house apart looking for a DVD with her EEG on it, that CANNOT be duplicated and the doc is gonna wanna see it.........
C R A P!!!!!!!! Trying to keep her on a schedule of nighttime meds at 7:30, bedtime at 8pm, up at 6:15am......yeah, that schedule doesn't always work out so well lol......But she really needs to get at least 10 hours of sleep at night......oh, the joys of the hard-knock life..........
18 days left to get your shirt designed by Mickie!!! We need to sell at least 10 shirts to get them printed, so please help us out and raise money for her seizure dog!! If you can share the link and help her out, we would greatly appreciate it!! www.booster.com/a_dog_4_mickie
We are still needing sponsors to buy Mickie's t-shirt! The sale ends in three week! If we don't sell a certain number of shirts, NOTHING WILL SHIP!!!! Please help us out! She worked so hard on this shirt and she deserves to have these produced! www.booster.com/a_dog_4_mickie
Now for the update::::::::::::::you may need to sit down.....we did.......
Thirteen hours later and we're at home......it has been a long day, I've kept my phone on silent for the most part because it's not easy to cry and drive and play on the phone at the same time......this has not been an easy day at Vanderbilt. And to be honest, my phone will be off the rest of the night because I don't want the phone to be blowing up again..........
Mickie and I left this morning around 5:30am and made it there smoothly. I was so tired and I left my energy pills at work, so I had to stop by the gas station and stock up on energy pills. We arrived 1/2 hour late (I really can't remember why), but the geneticist saw her immediately. We went through her trip to the hospital, and what she's gone through over the past three months......so he (and the med student) held her hands and walked her down the hall and back again. Yes, while they left the room, I completely broke down, and composed myself again before they came back in. He looked over everything, commented on how dazed she looked, then produced me with a few scenarios, one not better than the other.........1. ALS (Lou Gehrig's Disease) (this one hit the hardest and she needs a nerve study to check as well); 2. Juvenile onset Multiple Sclerosis (he wants her to get a lumbar puncture and see a retinologist to make sure she doesn't have Neuromyelitis Optica); 3. Ataxia telangiectasia (doc said that even though the test came back normal in the hospital, he's not going to rule it out. 4. MELAS, which is a form of mitochondrial disease, which will slowly progress as she gets older.
So that's the gist of it.........Matt and I trying to soak this in, it's not easy when it's your baby..........Mickie's cried because she knows she's losing friends.......I even get upset when her friends don't call or text or message her......it shows how shallow people can be. I can understand if they're scared, but guess what? MICKIE IS NOT CONTAGIOUS!!!!! I wish people would understand that!!
I have a meeting tomorrow afternoon with her school teachers and her principal, so we'll figure out our options then. We see neurology on the 10th back over at Vanderbilt, and the geneticist wants neuro to call him as soon as we get to the office so he can fill him in on Mickie's case.
Right now, I just want to go to bed and wake up tomorrow to go to work......I want to kiss my baby girl and everything will go away, but it won't. All I can do is hug her and tell her it's going to be okay....we'll figure out what's going on with her and she'll always have the people that love her by her side.........
All I can ask is that you all pray as much as you can for us, because we really need it. This is becoming the most difficult process we've had to go through, and it's not going to get easier any time soon.
Please dont forget to share this link and help Mickie sell these great shirts that she designed for her seizure dog!! Long sleeve or short sleeve, from size Youth Small to Adult 5x!!! We need to sell a certain number before they will print them! Your credit card wont be charged until after the fundraiser is over!!! www.booster.com/a_dog_4_mickie
Got some bittersweet news today.....more bitter than sweet, but fully understandable. Given Mickie's condition, we've been told that she may never walk again. Unless there's some miracle (which there better damn well be), she may continue to deteriorate and end up in a wheelchair. So, I spoke with the owner of the dog organization and we've pushed back the date of receiving her dog until sometime between Sept-Nov. The reason is this: Mickie's dog was originally trained for her epilepsy. However, because of Mickie's situation, they will now begin training the dog on mobility tasks, such as retrieval of items, and if Mickie happens to fall, the dog will now have a harness and he will be trained to have Mickie hold the harness while he "pulls her up". Honestly, I'm okay with this. Of course if she walks again, that's awesome too, we always have the skills if that happens again....but they're not charging us any extra, its just going to take a little more time. And of course, they won't tell us which dog she's getting, but they have narrowed it down to two for her. So I will be keeping in touch with them to let them know the final diagnosis after we go to Vanderbilt to see the neuro-specialist.
It really hasn't been easy. We still have that final $3500 to go, but in a way it's a good thing because we have that extra time to raise the money. Anyone that's met Mickie knows that she's not going to take this as final answer. We've taught her to never give up and always fight for everything you want and deserve. I am going to put her back in school on the 26th, providing everything goes okay at Vanderbilt, and while she can only tolerate half days (hopefully she can make it those 4 hours), she's learned to get up every day and try.....if she doesn't make it, that's okay, at least she tried.......I honestly think that blessings come in disguises and we will get what we need....it just takes time.
The worst thing is, ever since Matt adopted Mickie in 2013 when we terminated her SOB sperm donor's parental rights, I've always felt guilty. I feel guilty because I don't want him to feel trapped.....Mickie didn't start having seizures (that we know of) until March of 2013. I keep telling him I'm sorry for putting him in this situation, but he always says that if he didn't want to do it, he wouldn't have.....doesn't make me feel too much better though. He knows that I always handle Mickie's medical stuff, with doctors, tests, things like that. He knows that he will help when I ask him, and he knows to leave me alone when I'm stressed (which is fairly often). So for him to stick around like this when I've got a kid like Mickie, it sure lets me know that I have such an awesome husband--and Mickie has a great dad.....he's her father, and that's what a father does. He's there for his family, and I wouldn't trade him for.......okay, maybe trade him for a really hot movie star lol.......
Will keep you all posted on how Vanderbilt goes......you can always join her Facebook page if you haven't already at www.facebook.com/groups/fighting4mickie
Counting down the days to make the lovely drive to Vanderbilt. Her ENT and I have been emailing back and forth, and while he is supposed to be in the operating room on Monday, he's going to come over and see Mickie so we can nail anything down on our end that we need to take care of. I thought that was really sweet of him.....and considering we have to be there at 7:15 Central Time, I would hope we get that lovely treatment!!
I really don't have anything new to report.....I've talked to Mickie's principal....he's so nice ........and we're going to have a meeting either next Tues or Thurs to catch her teachers up on Mickie's (lack of) progress and she probably won't be able to handle more than 1/2 day. I don't care how long she lasts, I just want her back in school......if we have problems, such as her getting bullied, pushed down....I'm yanking her back out. No questions asked.
I was watching her walk in front of me today with her walker. I have to pay attention to what she does without letting her know that I'm watching......I'm sure you all as parents know what I'm talking about But you can literally see her legs shaking and how unsteady they are. It's almost as if she has to flop her feet forward instead of walking correctly. After three months, I hate seeing her like this, but I am so proud of her because my girl has the best spirit in the world. We've taught her not to get herself down and not to feel sorry for herself, and she's taken that in stride! She still has a beautiful smile on her face and no matter how crappy she's feeling or moving, she will always try to help someone else.
Whew!! I think that's about it! She's been dying to go to Nashville---but not for the doctors----she wants to go to Rainforest Cafe, which is where we try to go each time......she wants to go to Build-A-Bear, which she says I owe her a bear (really, you're gonna use that?)........and she wants to go to Five Below (yup, that I'll give her lol). For those of you who don't know, I live off Five Below.....and www.fivebelow.com is the absolute best place to go for phone accessories, DVD/DS games, sports equipment, clothes, shoes, etc. We don't have one in Chattanooga (YET), but we have them in Atlanta, Knoxville, and Nashville, so it's only about 1.5 hours away from fun..........for my Ohio Friends, I know they have one in Cuyahoga Falls and my Virginia friends......they're ALL OVER!!! It's what we flock to at Christmas lol...we're cheap, but we're good!!!
So, I will keep you all posted on how the Vanderbilt appointments go.......we just a whole bunch of labwork done today......14 different tubes of blood for over 18 tests.....but it's going to help point us in the right direction, and we'll decide if we want to get her a muscle biopsy or not. I'm still torn because she's already been through so much, but I would love a final anwer........but for now, like we've been told.......wait and see! Good night everyone!
I wanted to let you know that we have launched Mickie's t-shirt that she designed!!! We will be selling these shirts for 30 days and right now they are available in white long sleeve, but I am going to have them add on white short sleeve as well. They will be available in sizes Youth XS all the way to Adult 4X!!!! I am extremely proud of this one, because it's not so "girly" like the first one lol. This is more gender neutral and she wanted something to do with epilepsy and one of her most favorite things, which is martial arts!! Very proud of her! It took longer than we thought because she was in the hospital, but WE GOT IT GOING!!!!!!! Please follow this link to take you to the page. If you want a short sleeve shirt, give them a few days to adjust it and you can order!!! Please share this t-shirt link/page with everyone you know because we want to get this $3,500 towards her seizure dog!!!!! Thank you all for what you've done so far!!!
Well, we're hopefully getting somewhere, but it still remains to be seen.......her current neurologist came back today after the holiday, and how freaking convenient......he was never told that Mickie was in the hospital.......he was not happy to hear that, but he was also not happy that she had to be intubated and strapped down just for an MRI. I have told Mickie that she's almost 13 years old now, she's mature enough to make the decision as to which neurologist she wanted to see.......the neurologist that she's been seeing cuts up with her, makes her feel comfortable, and at the same time, makes sure he stresses the importance of taking her meds. However, the one we saw in the hospital didn't make her feel at ease, and when he and I got into it when he wanted to put her on Depakote.
For those of you that don't know, I've worked in neurology for 6.5 years. That's why I normally don't flip out when she has seizures, because I know what to look for and I know how she acts. When she has episodes like she did when I took her to the hospital, yup, I flipped out because I knew there was something wrong. But Depakote has been used for seizures for years. It's also used for bipolar disorder......however, we RARELY prescribe it to child-bearing females (yes, as a mother, I have to admit that my CHILD is hitting that age) because it carries side effects of infertility, Polycystic Ovarian Syndrome, weight gain and hair loss. I'm sorry, but with my track record of infertility, there is no way in hell I am letting my daughter go through the same thing that I did. So yeah, that neuro and I got into it.
Anyways, I think she's made her choice, but as her neuro and I were discussing it today, he decided that when we went to Vanderbilt to see the geneticist, we are going to get a referral to a pediatric neurology specialist to make sure all our bases are covered. He's questioning whether she has a condition called MELAS, which is the acronym for Mitochondrial Encephalomyopathy Lactic Acidosis and Stroke-Like Episodes. And looking through everything, wow, it's weird. We are also going to check to make sure she doesn't have pancreatic insufficiency.
Not many people know that she carried a diagnosis of Cystic Fibrosis for 3-4 years and was on special vitamins and chest therapy when she was sick.....hated it!!! So I've spoken with Mickie's principal, because she got signed up for gym somehow, and we are fixing that. But I want to meet with her teachers again and fill everyone in before we get back to school......which our new target date is 1/26......if she doesn't screw it up lol..........but she'll only be able to do half days if she makes it that long....I'll be thrilled!!!
Anyways, that's our update.......I've applied for another grant with the Sunshine Lady Foundation, which is headed up by Warren Buffet's sister, who, coincidentally lived in/near Fredericksburg, VA (Mickie's and my hometown)......we are trying to raise the last bit of money to get her seizure dog.....we are counting down the days until the dog becomes a permanent member of the family!! Mickie has been so excited, we have them on our facebook ( https://www.facebook.com/…/Sit-Service-Dogs/129106193854957…) and keeps picking out the dog that she wants......but the dog will pick her lol.......Even if her seizures don't get better, she'll have a boost in confidence knowing that if there are no two-legged people nearby, she'll have a four-legged friend.........
I wanted to thank you all for continuing to show your support for us as we work through everything. This has by far been the worst six months in quite awhile.......my baby has hopes of getting her 2nd degree black belt.....even if she only makes it that far, it's a goal she wants to have and achieve before she has to stop.......
I really am tired.....I mean literally EXHAUSTED!!! Mickie was discharged last night and she slept a good 13 hours until I called her and woke her up today. It was not comfortable sleeping on the couch in the hospital room, but I was able to put the couch directly next to her bed, and of course since we're from the north, we put the temp in her room to a cool 64 degrees.....brrr lol.
Mickie EEG did come back abnormal, which I expected. DUH, the first two were out of whack, so why wouldn't the 3rd be the same? Yesterday morning, they took Mick down to radiologist and put her general anesthesia so they could do the MRI and MRA/MRV of her brain. Once she was asleep, they intubated her and strapped her down so she wouldn't have a seizure. I was kind of nervous, kind of not, because she's been under anesthesia before, but with all of the problems she's been having, it's just something I didn't want to deal with.....so I went back to her hospital room, and made her bed, straightened up, got her some balloons, and a cute lil stuffed animal for her to love.
The nurses brought her back around 2 hours later.....she was still asleep, but they said she did great because I warned them beforehand that she has a very hard time coming out of anesthesia and her BP will shoot up and she will flip out, so they made sure they had meds ready to push when that happened....and it worked very well! We had to wake her up to give her her seizure meds (which she was overdue for) and she was still pretty disoriented, but we got them in and let her go back to sleep.
Meanwhile, time ticked by and we ha some lovely visitors: We had Mrs. Shawn who was from the epilepsy foundation and she had such an outgoing personality, we all became fast friends; and Mr. Rose, Mickie's martial arts instructor. I managed to rouse her awake for a little bith to say hello to them, and it was so great to see her laugh, even if she was a little slow.
Then the doc came in......he's like another doctor I am familiar with....he can be a total (pardon the language) dickhead, but the nurses says that even though he has that attitutde and likes to talk down to you, he's good at what he does, and that's the most important to me. I want someone to fix my daughter, because when he told me that she may not walk normally again, it broke my heart. I haven't found the heart to tell her because I always start to cry, even when I think about it, or if I'm even typing it to someone.
The ped neuro said that her MRA/MRV looked good, meaning no aneurysm, no stroke, no AVMs. However, she does have a 7mm pineal cyst, which isn't too big to worry about, but she's a little young to have one, so we'll have to recheck that. She also has some white "patches", which can be from an old head injury or her seizures could've caused those. But he had turned her VNS off for the imaging test, and when he turned it back on again, he set it to go off every 5 minutes, and so far she's doing okay. So he said that since there's no major issues going on, he'll let her go home and rest, because there's no sense being in the hospital and miserable when she can be at home. I was all for that!!
So while they're getting the discharge papers ready for us to go (that was around 2pm I think), next comes the physical therapist. She dropped by to make sure Mickie was used to the walker and didn't have any problems that needed to be addressed before she left. She was discussing things that we needed to do, and next thing you know, my lovely daughter decides to have a seizure.....It only lasted a minute, and her left shouler jerked, but her mouth dropped open, eyes never blinked, and then it was over as quick as it started. Now I don't get to see her seizures too often, but I'm catching on to what they look like, especially now that they're starting to get worse. The therapist didn't know what happened, but Shawn was still there, and she got to see it too, so we told the therapist it ain't happening, cause she's gonna crash.....Sure enough Mickie laid down immediately and slept hard....the therapist must've tattled, because they didn't let us go until Mickie woke up and was at least coherent....so we got to leave at 6pm.....by that time, she hadn't eaten in almost 24 hours and I had barely eaten since we left the house on Saturday.....so we hauled all of our luggage and stuff to the car, headed to Walgreen's to fill our presriptions and I took her to Burger King....her throat still hurt from the tube they put down her throat, so she got a slushee out of that, but when we got home, we both just crashed again....
This morning I had to be at work by 7am.....I wish I had just called out, but I could've kept my mind on something different than worrying about her walking, but that's easier said than done......I called Mick about 11:30 to check on her and she was still sleeping.....don't know if she had a seizure or if she was just worn out, but I told her to go back to sleep and I'd be home before Daddy left for work. Well, when I got home, she was running a little fever, so I gave her some NyQuil and then she was out within 45 minutes....me? Nope, still awake, even though I'm dead tired.
But I get to go to work tomorrow, possibly Thursday (depending on how much work I need to get done) and then on Friday as well. Luckily not the whole day, but since I didn't go to work on Monday, I just feel so behind!
I want to thank everyone for blowing up my phone and my Facebook with calls, texts, messages, posts on the wall, etc checking on Mickie, sending lots of prayers and happy thoughts our way! We really needed them and we continue to need them!! She will see the ped neurologist in his office next Tuesday morning to re-evaluate her to see how the meds are doing and and check her walking and we'll see what the next steps are.......
Wow, I've written a novel....sorry about that....I tend to do that when I'm tired, or when I worry.......it's just me.......
I wanted to update our supporters regarding Mickie: It's been a crazy 24 hours, but she was admitted to Children's Hospital last night after her walking/balance became increasingly worse, her speech was slurred, she was very disoriented and very slow to respond when I asked her questions. She also slept from about the time we arrived until 9am this morning with very little awake time--when she was awake, she couldn't hold her head still and her eyes occasionally would roll back and she took forever to answer.
The neurologist came in this morning and examined her, asked her memory questions, basic math, touching finger to nose, etc.....let's just say she didn't score 100%......then she had to get up and walk for him......at least a doc finally saw what we've been going through for 2 months now.......she was barely able to stand on her own two feet, let alone walk. So he got her history, medications, etc and we had a discussion/argument about whether she should be put on Depakote. I'm sorry, but I've worked in neurology for 6 years, I know that girls/women under 45 should NOT be put on Depakote because it can cause hair loss, weight gain, infertility, and PCOS. There is no way I am letting her go through that. So he caved and agreed to start her on Keppra. Meanwhile, we did an EEG this morning (hasn't been read yet), and she'll go under anesthesia tomorrow to have an MRI/MRA/MRV done of her head to make sure we're not missing any aneurysm, stroke, or AVM that's causing these problems.
He was honest and said that she may not walk again, let alone normally. If she was still walking like this 2 months after being off her medications that initially caused this side effect, it should've resolved itself, right? Nope......so we're sitting back and playing the waiting game.....she's slept on and off today, I got in a decent nap on the crappy couch next to her, and we'll "rinse and repeat" tomorrow. I was supposed to go to work because I have 13 patients, but obviously that's not going to happen. I need to see if I can sneak over there and get some stuff done tonight when she goes to bed.
I thinkn that's it for now, all we're asking for is continued prayers and support, we're at a critical time right now where we thought she could go back to school in January, but that remains to be seen now. :-(
Yes, I'm posting a few videos from her physical therapy this morning, mainly because I can do it when she doesn't focus on me and know I'm filming her lol.....but she did great and battled it out for an hour, so I took her to get some after-Christmas shopping done....mainly we get ornaments, wrapping paper, cards for next year, and usually a gingerbread house because she likes to have fun making them with her friends.
So we hit Target.....totally crowded, but we got a few cute things.....then we headed to the shoe store because for once I deserved to get myself something, which was new sneakers for work. Got a pair of Skechers with some bomb memory foam in them, so hopefully it will help my back!! Headed to K-Mart right after, had better luck with ornaments, but I had the cart and she had her walker, so she decides to separate from me and do her own "looking"......except her "looking" consists of putting things inside her little compartment in her walker and on top of the seat of it too lol. So much to her surprise, I answered no, no, no to just about everything she picked out. We bartered, bitched and moaned, and settled.....headed up to check out, which took almost an hour in itself!
Luckily, we ran into one of our favorite nurses and good friends, Mrs. Cindy, and we chatted for a bit.......until I hear my child hit the floor. That's right, she had gotten up from her walker and her legs gave out and she hit the floor. Didn't break anything, except her pride cause it was sooo packed, but she was okay.....So we went straight home after that so she could rest, it had been a really long morning for her. Right now, we are going to plan on letting her go back to school on January 12th. We'll give her some time to get acquainted with 1/2 days for awhile, then work up.
I am going to see if I can call her doc on Monday to see if they can order an MRI for her to make sure there's nothing that we're missing that could be causing the problems with the way she's walking. Meanwhile, she's now sound asleep in her beautiful little inflatable chair that folds out into a bed....so yes, I moved the couch around so she could put her chair here and zonk out lol.....of course, see the pic below.......
I'm already focusing on tax returns because we still have to make sure we can pay off the rest of the balance for the seizure dog, which we're counting down for! Hopefully only about six months, and they're STILL keeping it a surprise! We have no clue if it's a boy or girl, or whether they're gonna be chocolate, black or yellow....so exciting for the suspense!! But we have bills to pay and we want to take her back to the waterpark hotel for her birthday......for those of you who don't know, we had taken Mickie to the Wilderness at the Smokies water park hotel last year, right after she started a new seizure medication. Not even 12 hours after arriving, we were packing up and taking her down to the car on a luggage cart because she could not walk and was having seizures and stroke like symptoms. We literally hauled ass back to Chattanooga and took her to the ER. It was the 2nd year in a row her birthday trip has been ruined....the year before we'd taken her and a friend to Disney World and Mickie has no recollection of the trip because she was having seizures the whole time (this was before she was diagnosed). Luckily her birthday is right after tax returns so we like to let her have fun. Fortunately, we called the waterpark hotel back and explained the situation, and they gave us a certificate for a free night, and that expires at the end of May.....need to use that up quick!! She really wants to take a friend with her this time, which we're okay with, because it's always more fun with four people........
Of all the presents Matt and I had I bought her (including this awesome inflatable chair/bed), I don't think a single thing was over $30, because I absolutely LOVE shopping on www.lakeside.com, it's the perfect site for us poor people! lol Have a wonderful weekend!!!
Merry Christmas everyone!! Mickie was so excited today and the smile on her face was so heartwarming to see----and it almost made me cry......these last 2 1/2 months have been the most heartbreaking for a parent to watch---going from one day of seeing your child bouncing off the walls and doing roundkicks in martial arts, to the next day of seeing her unable to answer questions, get up to go to the bathroom, and lose all ability and tone in her legs to walk. It's left her feeling alone, and it's had me upset because no one from school has hardly contacted her to see how she's doing, and it just breaks my heart at how people can call themselves "friends" these days....it almost makes me want to take her out of that school and put her in a different one. But she's a fighter and she's a leader. She'll pull through, and if she decides to go to a different school, then that's okay, it's her decision.
But today was Mickie's day......we have had so many people send Christmas cards, and people have dropped off presents to my work from "Santa" and they've arrive anonymously in the mail, so when she woke up today, oh, the smile!!!!!! So thank you all who have made her feel like the special girl that she is! Now we are worn out, Mickie is so excited over her art supplies and we're going to try to get her a card table or something to use as a "bigger" art desk.
Tomorrow we have physical therapy at 8:30am. I think we're going to go ahead with further testing because questions have risen as to whether she may have had a cerebellar stroke, and every time I think about it, my optimism just decreases a little bit more............
Next topic....Mickie has designed her new t-shirt to sell to raise money for the seizure dog, and I am so proud of her because it combines something she's passionate about and something she's fighting, and she made them mesh together so well! We will start selling the shirt in about a month, to give people time to recover from the holidays, and it will NOT be so girly this time lol. That's about it, gonna get some sleep and off to physical therapy tomorrow!!!
MERRY CHRISTMAS!!!!!!!! Yes, I'm up at 1:30 in the morning, doing what every other parent in the world is doing.......helping Santa put the presents under the tree!!!
I can only hope and pray that next year is at least 75% better than this year because I feel like I'm 70 years old and I'm exhausted! Running to doctors, running to therapy, running to pharmacies, working at work, working at home, helping Mickie with homework, etc, etc, ETC!!
Mickie's been in physical therapy for about three weeks now. We have a great therapist and she and Mickie mesh very well together. Mickie's always in great spirits, but I hope that it helps. She's been using her walker for about 1 1/2 weeks now and I don't know what would've happened if she didn't have it. I walk behind her sometimes and her legs literally jerk and shake while she walks. She cannot walk normally to save her life. I just want my baby girl back!
I will be sending her back to school though, when they return in January, even if it's only half days to start with. They are going to let her use the elevators and they'll probably give her a buddy to help her out with books n stuff, but whew!
To our wonderful donors and followers, thank you so much for making Mickie feel special. For those of you who really know us, we work our asses off every single day to bring home money to pay the bills. I work days, Matt works nights, and we only see each other on the weekends. Most of the time our bills are more than what we bring home each month, leaving us scrambling to figure out what to do next. Sure, we've had times where we've had mac n cheese for dinner or rice and gravy or peanut butter & jelly sandwiches. It happens, not the first time, not the last time. If we ever do bring home a little extra money, we put it towards her seizure response dog.
You all have made Mickie feel so special by sending her cards and even gifts to her PO Box for the holidays, and I cannot thank you enough! Every time she checks it (we like to let her check it by herself), she gets so excited when she sees her name on it! We're saving the envelopes, so she can try to send a letter/card back, but it may take a little while.
She's not doing well with her seizure medicines, and she's still having seizures that are slowly progressing, but her body is still not metabolizing them like they should be, so we're doubling her meds and rechecking them again. We'll see! She has her appointment in Atlanta in 2 weeks, so never know!
Mickie hasn't been to martial arts since October, but we still drop by there to let everyone know that yes, she's still alive and she misses it terribly. This year, she's tested with a cast on her arm, and she's had seizures and tested less than a day later, tested and had to take a nebulizer treatment in the instructor's office right after, but this time she just couldn't do it. Her instructors have been so protective of her since she started having the seizures (at least that we know of since April 2013) and won't let anyone touch her from the neck up when they spar or practice their moves. But they had their annual Christmas banquet last Friday night and even though Mickie had a rough week, she was determined to go. We got to see some wonderful people we hadn't seen in forever, and the director, Mr. Rose, honored Mickie with awards of courage and strength.....wow, it fit her to a T and we had no idea, but she was so excited (and embarrassed) at the same time because she had to be escorted up there so she wouldn't fall. Not a lot of people know about what she's gone through, and I think they're finally starting to realize. :-(
Once again, thank you for all of your kind gestures, you have no idea how much we appreciate it! We are officially counting down and hopefully it'll be right around six months before we get the dog, although it would be GREAT if we could get it sooner! Still don't know what color the dog is or even if it's a boy or a girl, but we know it's going to be a special part of our family for a very long time!!
Thank you all so much for the outpouring of Christmas cards to Mickie's PO Box!!! She has been so excited to receive the cards and trying to figure out where to tape them all up! We're saving the addresses so that she can send thank you cards as well (yes, she's polite like that!) and we just love getting all the heartfelt notes inside, and the glittery ones, etc. She's ecstatic!!
She's doing well, especially mentally, but we are still working on balance and walking. We've been in physical therapy for a week now and are showing very little progress. We'll see how she does, but I still intend on her returning to school in two weeks, even if it is for just a half a day, it's still school!
I think Santa will be good to her, we've had some wonderful people donate some gifts that she's had on her Christmas list, and I can't thank you all enough! We've been so busy trying to put our extra money towards her seizure dog that (yes, we forgot to pay some bills) but we also forgot about Christmas too, and I hate that. I have to promise myself next year that everything will be different!!!
I guess that's about it!! I am utterly exhausted, so I'm going to bed at 9pm at night, and so is the child!!! If I don't get on here before then, I hope that everyone has a safe and Merry Christmas with your loved ones and embrace the love and spirit!!! <3 <3 <3
No matter how many problems Mickie has or how crappy she's feeling, she always tries to put others ahead of herself. I decided to take Mick to work with me again today because we were having a little Christmas lunch where everyone had made something special. Since Mickie had helped me make the deviled eggs and peanut butter oreo brownies (yup, it's as good as it sounds!), I thought she deserved to chow down!......I had 20 patients and a lot of work to catch up from having to leave early yesterday, but hopefully we can get through this week quickly!! She has physical therapy again tomorrow and three more times before Christmas, so she's going to be a busy lil bee!! I was very proud of her today, because she did get some of her homework done (although she could've gotten more done had she not been on my laptop playing with my webcam!), but she was sweet enough to take her little walker out to the waiting room and decorate our windows with christmas clings for our patients! I'm literally exhausted though.......we found out that we have to work on New Year's Eve and Christmas Eve......something we have NOT had to do since I've been there.....we were volunteered for this, so um.....yeah,not cool......either way, I guess we'll have to make the best of it. Considering my partner and I had already planned to work through the holiday by purging our charts and sending them to storage, filing all our labs, going through our referrals, etc, we really needed this time with quietness in the office, not with patients and phones ringing off the hook....so yeah, he owes us......Okay, back to Mickie lol......For those of you who don't know, Mickie and I lived in Fredericksburg, Virginia until 2008--we were both born there and we both miss it terribly. That's our real home and we'll always consider it home. My mom and dad are buried up there, but money is always an issue when it comes to getting up and back and finding a place to stay. We're hoping to spend a week up in Virginia this summer and "make the rounds" to see our close family and friends. It may have to wait until we can get her dog, that way she'll have companionship in the car. I really miss visiting my mom and dad's grave though. It's this time of year that I really think about them a lot and wonder if things would've been different had they still been here. Strayed from the point.....there was a store up there called Five Below.....and it's literally that....EVERYTHING in that store is under $5. We're talking ipod and iphone accessories, movies, ds games, clothes, sports stuff, crafts, hello kitty, etc. So we are taking Mickie and our "other daughter", one of her BFF's Sydney to the Five Below in Atlanta this Sunday to treat them to a little shopping trip. That way, they can get a few little things and they can get what they want and we don't have to worry about them complaining that we got them something they didn't like! Ha ha! My favorite way to do it!! Either way, I've taken my mom's love for me and I've turned that into my love for Mickie. My mom would be proud of me, even though it's hard for me to admit. A lot of you don't know the story behind my mom, and I'm not ready to talk about it just yet, but let's just say I've written 110 pages of my autobiography so far and will hopefully try to get it published once I get over the writer's block lol. Okay, done chatting, here are some pics of the lovely art that Mickie did today at my work!!! And yes, she decided to have some "hilarious moments".....aka true Mickie moments!
I only have one request for our wonderful donors and supporters: Mickie has not been to school since 10/15, so she hasn't been able to socialize with her friends (in person), which of course has her down. I'd love to cheer her up if you all could share with family and friends all over. If she can get Christmas cards sent to her, it would put a smile on her face to know that so many people are thinking about her and wishing her well for the holidays! We are using the PO Box that donations are sent to for her seizure dog, and everything goes to her. I would greatly appreciate it! Mickie's address is PO Box 2121, Fort Oglethorpe, Georgia 30742. Thank you so much in advance!!!
First, thank you to those that have been so kind to send Mickie a Christmas card to her PO Box.....soooo grateful!! This really cheers her up when she's had a bad few months! (In case, it's Mickie McCoy, PO Box 2121, Fort Oglethorpe, Georgia 30742.
Second.......I finally have my laptop charger and I have access to my laptop and pictures!!! It's been a pretty busy week.......we are slammed at work, seeing almost 90 patients this week, when we normally see 70.....dang that holiday season!! But I took Mickie to work with me today because she had to see her neurologist.....he would watch her walk in between patients, so he knew something wasn't right....DUH. So when he came in the room, he knew that wasn't how she normally was. Yes, he is frustrated. He's used to people he can fix and Mickie is just a complicated case. So we're getting her a walker with wheels and brakes, which I'm hoping will be here tomorrow because it's getting crazy with her balance. The doc decided to play with her VNS and brought the settings down so that it goes off every 10 minutes instead of 30 minutes and increased the voltage so it's a tad stronger....so far no complaints, she likes it when her voice vibrates often lol. We have also increased one of her seizure medications up to twice a day, the other meds will stay at 3 times a day and we need to get levels done (forgot to do it today, go figure). Then we went to her first physical therapy tonight......and if any of you had physical therapy, you know the first one is always the worst one!! We spent an hour with her showing them how she walks, turns, squats, and sits. We had a great therapist, Mrs. Chris and we just kicked back and had a great sense of humor with the therapy! Mickie has exercise that she does at home twice a day, and we'll do at least six more visits of therapy this month to get her back on her feet (literally).
It's been extremely stressful. Some of you know that we're financially strapped with trying to use whatever money we have leftover for her service dog (and times like this month when we're short on our bills so we have to choose what can wait and what NEEDS to be paid), that I'd love Mickie to have the nice Christmas she deserves. It's been heartbreaking to see her go through this, and I'd give anything to put her back in school, even if she has to use her walker. We have had a VERY GENEROUS handful of people step up and surprise us with amazing presents for Mickie from them and from Santa, and it really is so heartwarming to see how many people really love and care about her. Unless you've been in my shoes and have to see your child go through this on a daily basis and have no way to fix her, you're not going to have a clue of what we live. So thank you all for letting us give her a wonderful Christmas that she deserves!
I've thought that I was the "invincible Mommy" over these past few years.....carrying off a full-time job, being a college student, full-time mommy running to 12 different doctors in 2 different states, running to the pharmacy each week to pick up meds and deal with my back re-herniating because I can't rest. However, since I had my blood clots in September, it's really taken a lot of my energy until my heart can heal because I waited so long before I got treatment. I can still hear the ER doc giving me a lecture on how "if you waited one more week, you wouldn't be here"......once again, he didn't walk in my shoes so he has no idea....I don't have time to stop and take care of myself! Either way, last week when I woke up, I had no vision in my left eye. It freaked me out, because working in neurology, I know those symptoms.......but of course I had to get up, get dressed and get to work. The vision came back about 1/2 hour later, but I've had blurry vision in that eye ever since. When I got to work that day, I called over to my boss's opthalmologist. Luckily I had those good connections, because she got me in right away and informed me that a couple of veins in my eye were enlarged, making her think that I may have had another blood clot behind my eye......well isn't that just fan-freaking-tastic!! Just another thing I don't have time for!! So she's consulting with a retinal specialist and we'll figure out if I need to have another MRI on my brain or not. Nope, don't have time for it!!
Anyways, I'm still here to take care of my baby girl and work to bring home the money to pay the bills.......oh Lord help me now please!!! Either way, we'll see how she does between the VNS adjustment, the med increase and the physical therapy. Our new goal is to have her return to school after Christmas. So everyone pray real hard, happy thoughts and good juju!!!!! Have a great weekend!! xoxo
I keep wondering if I should just go ahead and buy Mickie a wheelchair because it's getting very tiring holding her up at the stores. She's very unsure of her movements and her left leg jerks, making it tired more quickly, and her left anke buckles sometimes when she is walking, making me thing she's goind to break it at anytime! She was so weak and tired last night when I took her to Michael's for some school work that I thought I was going to have to drop everything and take her home.
We had a setback today......she'd most likely had a nice lil seizure last night because she didn't wake up until noon today. Her pupils have been dilated as if she's high (yeah, she laughed too lol), her balance has worsened......she has difficulty walking around for more than an hour before she's ready to collapse, and her muscles in her legs have weakened to the point where her left leg jerks and her ankle is buckling, causing it to "turn in" when she walks. Looking at her right now, she's trying to work on some social studies homework, but her eyes are closing and she's just so exhausted. It's extremely frustrating to see her go through this, as I'd wanted her to go back to school a week ago, and that's not happening. We were supposed to see the epileptologist next week, but his mother died and he had to leave the country....problem is, we're changing insurance companies and I wanted to get her in before the end of the year. Not happening. I'd really like for you all to help us out and possibly send Mickie a Christmas card to the PO Box that is with our fundraiser......it's PO Box 2121, Fort Oglethorpe, GA 30741. I tihnk that would really brighten her spirits and if you could share the page/post with your family and friends, even getting cards from people she doesn't know will put a smile on her face.......Will keep you all posted on what the doc says-----
We're home!!! Wow, it's my first trip driving since I had the blood clots in my lungs, and I now realize how important it is to actually stop and walk around for a few minutes....I'll learn next time!
Meanwhile, Mickie had her trip to the GI doc in Knoxville today. Such a long day! I had to be at work at 7am, leave there at 1pm, get home at 1:30 to change and get Mickie, and be up in Knoxville by 3:30....yeah, that didn't happen lol. We were planning on scheduling her endoscopy later this month....however, that has been put on pause for now, because she's having so many problems with her seizures and still having lasting side effects from the seizure medicine, he's afraid that if he puts her under general anesthesia, especially twice in 6 months, it will have a nasty effect. So we're okay with that for now .
We are still having problems with her stomach pain because of the constipation that she's been having. Of course being stuck at home for almost 7 weeks doesn't help it either, so he wants her off the Powerade/Gatorade and drinking at least 3-4 bottles of water each day, along with 2 capfuls of Miralax in the mornings. If that doesn't help within the next week, we need to let him know so he can get a "super power" cleanout going because if she keeps it up, it can be dangerous....yeah, I know, TMI.
Next subject.......we got Mickie enrolled in physical therapy and normally I'm great at balancing all of her 12 doctors, but apparently I didn't realize that she was supposed to have her first PT session at 5pm today....Oops.....well, I had to reschedule it for next Thursday.......this is going to be such a busy month!! Apparently my insurance is changing at the end of this month and there goes a whole new freaking deductible! So we have two neurologist appointments, a dentist appointment and at least 8 physical therapy appointments. Yup, I'm tired just thinking about it!!!
We started her on a new seizure medication last week, Banzel, which is supposed to be compatible with her VNS. So far, I don't see any effects, but then again, I've forgotten to put it in her nighttime meds the past two nights....I must work on that stupidity!!!
We did have a good Thanksgiving though, I took her to Wal-Mart because there was this really neat Crayola stuff that she wanted, so I bought it for her.....yeah, the rent was due yesterday......oops....I think that may be a little late........Other than that, our tree is up, we're trying to get Mickie out of the house a little more often, although, she still has the wall as her best friend.......
We are soooo close to hitting our goal, so please share this site with your family and friends, it would be an amazing Christmas present to Mickie to know that her dog will be fully paid for an she'll get him/her in the summer!
We started her on a new seizure medication last night, one that unfortunately has similar side effects as the Fycompa. I notice her balance worsening within 1/2 hour of taking her medication, and she looks extremely tired. But once again, I need to give this a little time to work itself in her system. I can't give up easily, because she's possibly having seizures during the day that are affecting her limbs and we're pretty sure she's having the seizures at nighttime.
I really wanted her to go back to school on Dec 1st, starting out with half days, and building back up to whole days, but that may not be possible. The doctor just ordered physical therapy for her 2 days a week for 4 weeks to work on balance and strength training so that she can "re-learn" to walk again, without holding onto the walls. She hasn't been to school since 10/15 and it's been rough trying to get her to focus on her makeup work, because she doesn't get to learn with the rest of her class and it makes it hard. But she's a true fighter, no matter what!
People say that Christmas isn't about presents, it's about being with your family and remembering the birth of Baby Jesus. I understand that. I've always understood that. But as a mom, this year is different. We've poured our entire savings into the seizure dog and any extra money from our paychecks (which is usually very little to none) has gone toward the dog because that is a major priority. However, Mickie has been through sooooo much lately, that I want to give her a good Christmas....and that's hard to do. She understands that she's not going to get everything she wants and when she said "Mommy, it's okay, I know," it just broke my heart. She's at that age where she knows everything, and it's not that easy to hide it from her.....
Whew......I'm just completely exhausted......so much has gone on and I just want to let these holidays go by and forget there is a holiday anymore.....and I have my reasons for that......
I took Mickie to get her Christmas pictures taken last night, and they were very cooperative because she is unable to stand up, so we did everything sitting down......and of course, she turned out extremely beautiful, as always.....I just love her to the moon and back!!! xoxoxo
We will be sending out Christmas cards, but if you feel like making Mickie's Christmas extra special, she loves to receive Christmas cards in the mail. She enjoys putting them on the door and knowing that she got a card!! If you are interested in doing that, please send a card to her address, PO Box 2121, Fort Oglethorpe, GA 30742. Have a safe and happy holiday!!!
Finished our beautiful Christmas decorating!!! Mickie is my magical helper, and while she had to sit the whole time to decorate, there was no complaining and she's just perfect!!! Love her to pieces!!!
Wow, a week......slow progress, but I got Mickie out of the house for the 3rd time in six weeks. I didn't intend to be out as long as I was and it took a little toll on her.
I had thrown my back out at work yesterday and still went home and broke out the Christmas decorations and put the tree up! Lights aren't on, ornaments aren't hung, but we're just chillin this weekend!
I finally had enough money to take a REAL trip to the grocery store....yes, we're financially challenged right now, so we've had just enough money to go to the store and get the milk, bread, etc. But today, I got enough food for hopefully one month! Woo hoo!! These stupid women decided that playing in the scooters was more important than letting my child use one when she actually needed it. Pissed me off.....anyways, she got her own cart to lean on and we ended up spending almost 2 hours in there.....a tad longer than I thought.....I could tell her legs were getting extremely wobbly and she was just exhausted, so I got to the checkout line and waited. She went over to the next aisle to grab a soda and the next thing, she's starting to fall, hitting her neck on a metal rack---so now she has 2 lovely scratches....but she toughed it out and we came home......I ended up carrying ALL the bags into the house, once again messing up my back, but happy enough to know that my kitchen is pretty well stocked.
Mickie is getting along fairly well, she's been off her new seizure medication for about 10 days and the only thing she really needs to work on is her balance. She is having a very hard time trying to walk normally without having to hug the wall or keep her hand on some object to steady herself. It just breaks your heart to see it.
We are going to try to get her back in school on December 1.....six weeks AFTER she was in school, but she has a terrific homebound teacher who has been helping her stay as caught up as possible and I'm happy to say that she still has A's and B's!!!
I know some of you have messaged me through Facebook or emailed me to ask what Mickie wants for Christmas. Yes, I'd love to be able to give her a good Christmas because she has so deserved it after everything she's been through, but financially, we just can't do it. She knows that Christmas isn't about the presents, but she's still a kid and I'm working on what I can for her. She's known that any extra money we have left over (which is little to none 3/4 of the time) goes directly into her seizure dog fund. But in any case, here is what she's wanting for Christmas: Mickie is fairly simple. Yup, she's still into her 18in baby dolls and all the accessories (ie, crib, stroller, clothes, etc); she loves art stuff.....pottery wheels and the extras, crayola marker maker and paint maker, scary movies, anything Batman, she's been dying for a Batman sheet/comforter set lol. She also wants some Boom-Boom Balloon board game; slippers or non-skid slipper socks; a trampoline (yeah, i thought she didn't have any big items lol); Nerve Bow Blaster; and of course her service dog......lol............I hate shopping Black Friday, but I'm an evil person and I like to shop on Thanksgiving evening while my bird is in the oven......so we'll see how it goes!!
I think that's it, I want to wish everyone a very Happy Thanksgiving and be safe, be merry, and enjoy the family and friends that you're surrounded by!!
Only a few days left for the Trades of Hope fundraiser to support Mickie's seizure response service dog!! These beautiful pieces of jewelry have amazing stories behind them, and they will make excellent Christmas presents!!! Please visit
www. mytradesofhope.com/parties/6588 and check out these amazing items, all while supporting Mickie!
She's hanging in there, still hasn't been out of the house yet because she's still very off balance. She was supposed to go for her 2nd opinion at Emory this Tuesday, but my engine light came on in my car, which really makes me nervous, so I'm going to have to have that checked out by someone and pray really hard that it's nothing major, because I can't afford anything like this right now!!! On the plus side, when I called to reschedule Mickie's appointment, I told the receptionist a little about Mickie and she flat out said that I don't need to see the nurse practitioner, I need the actual epileptologist......the pediatric neurologist that specifies in epilepsy. So I was very thankful that I'd talked to her, so now we have her appointment on December 16. I can manage that part, because we see her GI on the 2nd up in Knoxville and I'll probably be scheduling her endoscopy up there over Christmas break.
I just want this year to be over! I want the holidays to be over, because she knows that she's not going to have the kind of holidays she had last year, primarily because we all know that any money we have leftover after bills (yeah, we never do, but still) go directly into her seizure dog fund. We'd give anything to have the dog now because she could really use him (or her), but we're still PATIENTLY waiting!! ;-)
I hope everyone is staying warm, wherever you are!! Me, I kind of like this weather, because I can bundle up as much as I want to!! Good night!!
Today was Mickie's 2nd day out of the house in a month......and we took a trip to the neurologist and it wasn't as good as I'd wanted it to be. I don't think he realized just how hard she had crashed over the past month, so he was pretty upset about it. And of course I told him that #1, I didn't want to abuse my privileges of working there and walking into his office whenever I thought she had a problem and #2, I told his "nurse" three times over the past few weeks that she was going downhill fast and nothing got relayed back to him. Her last dose of the new med was on Tuesday night and it will stay in her system for 105 hours. However, she has had multiple seizures along with these side effects, so we're increasing her Zonegran to 100mg three times a day and keeping her Vimpat at the current dosage. Her jerking has returned in her limbs and her pupils have stayed dilated, she's still severely off balance and sleeps a lot...........and the worst part is that she's gone downhill so hard and so fast over the past month that he doesn't think she'll be back to her old self until Christmas, which is extremely disappointing.
Next subject...........last week, Mickie won a radio contest to fly to Florida next month to meet Meghan Trainor at her concert and backstage. It was really cool, because she sings "All About That Bass" and you had to send in a picture identifying your best features or your flaws. Mickie shared a picture that was taken shortly after her VNS implant--she said that the scar was not a flaw, it was her battle scar and that is her "bass". And the radio station chose her! It was an absolutely amazing honor and to see the look on her face that she had won something like that was amazing! However, sadly I had to contact the radio station to let them know that she was in no condition and not medically cleared to fly. There was no way she could do it safely and she knew it and has accepted it. The awesome program director at the radio station, Sassy, hooked Mickie up with tickets to the aquarium, a t-shirt, and a bunch of CD's to keep her busy! They were just so sweet and understanding of the situation. I also contacted Meghan's publicist to let him know about it and he's sending Mickie a package of autographed items from Meghan, which was really nice of him to do.
It's just been so difficult on all of us, physically, emotionally, financially, etc. We worry about the holidays coming up, because we want her to have a good Christmas, but the seizure dog needs to take top priority. The simple fact that she's getting worse means that the dog will probably come at the perfect time. We're trying to keep her caught up on her schoolwork and even that gets difficult to keep her focused.
Anyways, I think that's it for now, I will be taking her to Emory in Atlanta for a 2nd opinion with a pediatric epileptologist on Tuesday......the only problem I have right now is that as many problems as she's having, I can't drop everything and drive her the 90 minutes down there to get an appointment when I can usually get her in my work within a couple of days.....it's just a hard decision to make, because she has docs all over the place.......all I ask is that y'all keep Mickie in your thoughts and prayers and she works this evilness out of her system, and hopefully we can get her back to school after Thanksgiving!!!!
Instead of Christmas presents this year, Mickie would like for you to share her pages and possibly make a contribution towards her seizure dog. After everything she's been through over thse past two months she completely deserves a loyal companion to be by her side. She knows that because of all the docotors, and medicines, and surgeries and bills, that her Christmas most likely is not going to happen....at least not at this point. It breaks my heart because we try to give her the best presents that we can, and this year is not going to happen. She knows that this dog will basically be her next two Christmases and her next two birthdays. I know it will be worth it in the end though.
Friday will officially be a month that MIckie has not been in school. I know she's having seizures still, and I think they are finally starting to get to the stage where they are visible. She's wetting the bed more frequently, and we aren't sure if they are seizures or side effects of the new medicine. Either way, she's still trying to get uphill to where she originally was before "all this crap".
Her spirits are back up to normal while she's awake. She's bubbly and happy, just the way I like her. However, she's only been out of the house one time since Oct. 15, so it has to be rough on her not to see the fresh air. She sleeps on the couch most of the time, and I sleep on the recliner with her, mainly because I worry about her and usually wake her up every 2-3 hours to see if she needs to go to the bathroom. Sleeping in the recliner has really done a number on me, because I've already had one surgery on my back, I don't want to make it two!!
I will be taking her to see her present neurologist on Thursday morning at 8am, mainly so he can see exactly what she and we have had to live with for this past month. So I figure I'll get her there at 7:30, and I'll get some work done while we wait. I've just been feeling so crappy this weekend, I haven't felt like doing anything at all! I hate this weather change!!
Hopefully Mickie will be able to go back to school after Thanksgiving, our fingers are crossed! I had to reschedule her GI appointment today because there's no way I can drive her up there, walk her around the hospital and drive her back home. So that's set for Dec 2nd.
It's going to be weird not having money to go shopping this year, but we have set our priorities and we need to stick with them. We are determined to get her that beautiful dog that will comfort her and probably save her life in many different ways. Until then, yes, we're literally living day to day, paycheck to paycheck; picking which bills we can pay 1/2 on, and which bills can be combined and put off till the next month.
I will keep you all posted on how she is doing. I hope she gets better within the next few weeks so I can have my baby girl back. She misses going to school, her friends, misses martial arts, and just misses life outside of this house. If anyone has any ideas on how we can continue raising money, please let me know, because we still have $6,000 left to raise for her!
I encourage you to please share your emails/this page with Mickie so we can work on raising money that's soon due to the dog organization!!! We still have halfway to go and hopefully her dog wil be here next summer!
However,It has been a very emotional and stressful week, as Mickie seems to have gotten worse. I won't go into details because it's not something I want to discuss and have her friends know, but she's repeating herself constantly, slurring her words, has difficulty making sentences and carrying on conversations, constantly dizzy and looking drugged out, unable to walk more than a few feet without either stumbling or falling flat on her face and it's just been heartbreaking to see her go through this. From a 12 year old ADHD black belt bouncing around to the mentality and physical capabilities of a 1 year old.......yes, I've broken down more than my fair share of times......at this point, I think I'm fully entitled to......I'm ready to have anyone take my place for awhile so I can retreat to my quiet place for just a little while..........People ask me why I still have her on this medication. It's difficult to answer. I've taken her back down to the lowest dosage because she did semi-okay on it during the first week.
She hasn't been to school since 10/15 and it's hard to describe how she's acting, so when I take her into the doctor next week at 8am (that's usually her worst time), he'll see for himself what a crappy medicine this is. I've already taken her off one seizure medication over the past three weeks, and we're still running out of options. I'm a mom that's trying to do the best for my daughter and I'm always going to be judged no matter what. At this point, I look at the fact that she still has her sense of humor, and I can still kiss her goodnight and tell her I love her. That's all that matters. I'm going to get her better.......and yes, it's times like this that OMG I really want my mom right now......
I'm becoming more discouraged as we seem to be headed on a downward spiral. Mickie is on a 24 hour "drunken" mode, and she's apparently still having seizures, especially at nighttime. This morning I woke her up before work to give her her morning meds and she stood up to go to the bathroom. We took two steps and decided to do a faceplant on the floor....except her face was blocked by the fan stand in the living room. Instant tears, but she couldn't stand up because she was too disoriented.
My heart just breaks because she's missed three weeks of school, there's no sign of going back anytime soon, and I can't fix her. I've dropped the dose on one of her medications, and stopped another medication completely. What she reads, she doesn't retain, what she writes isn't always legible, and she can't stay focused for too long without drifting off. We'll see how well our amazing homebound teacher does with her tomorrow!
Either way, it's been a difficult month, it's going to be a difficult rest of the year, because we've told Mickie that she's not going to get a lot for Christmas, primarily because our next installment of $2200 for the seizure dog is due on 1/1. Not so easy when you want to give your child a Christmas, but the dog is going to be basically her next three Christmas presents....in the end, I know it's going to be all worth it though. Dealing with work, home, and everything in between, I'm struggling not to snap....and it's becoming harder and harder every day.
I have patients ask me how I can be so cheerful when they know what I go through.....all I do is smile and tell them they don't know the half of it, but if I didn't love my job, I wouldn't come to work smiling. I know I get to come home every night. I want to make sure she gets her dog, I want to let her walk normally again, I want her to be oriented and focused and go back to school and be happy and chill with her friends! And I don't see that happening over the next few weeks. At the rate she's going, she may not be going back until after Thanksgiving, and it breaks my heart. She has been out of the house ONE time since I picked her up from school on October 15. It's sad and heartbreaking. I want my bubbly little girl back, not my drugged out space cadet.....
I wanted Mickie to go back to school today. I wanted her to walk without hugging the wall or her knees buckling. I wanted her to not sleep 12 out of 24 hours a day. I wanted her to get out of the house after 10 days of being on the couch. And I wanted her to be able to go trick-or-treating tomorrow. I didn't get any of that....and she didn't either.
She's still having side effects of her new seizure medication, which we've come down to 2mg on, but we haven't stopped it yet, because I want her to get used to this mg. It's hard to tell if she's had a seizure because how much sleeping she's done, and I can usually tell because her texts are illegible (probably a different language). She has her lovely sense of humor and smartass comments back, which I'm thrilled with (insert sarcasm here).
I'm optimistic in obtaining our second opinion from the pediatric epileptologist at Emory in Atlanta on the 18th, I'm sure they'll be interested in trying to figure out why her VNS is set so far apart when it should be going off every 3 minutes by now, instead of every 30 minutes. She's getting no benefit from it whatsover, plus we really need to find the right medication for her, especially since her body doesn't seem to be absorbing the medicines she's on to begin with! It's my money that's being wasted on medicine that isn't helping her, so we need to find something that is helping her!
We just need prayers that she can get as back to her normal self as possible so she can try to get back to school, even if she can only make it for a few hours, I'm happy she tried. We are still halfway to our goal and still looking for donors for Mickie's seizure response dog, hopefully due to us next summer. The way she's been these past few weeks, that dog would've been a perfect addition for her comfort ;-)
We are working on putting together a board breaking fundraiser with her martial arts schoool. However, it's been difficult to raise the money and get the stores to donate the wood. We are looking for someone to cut the wood in to squares/rectangles for us once we receive the wood......any volunteers?
I guess that's it for now, we're just stable, and we are hoping to keep it that way. Thank you to everyone who has texted, messaged, called, and emailed about her, we appreciate the cyber hugs, love and support, it means more to us than you will ever know!!!
Please remember to check out Mickie's new fundraiser, which supports her seizure response service dog......the link is www.mytradesofhope.com/parties/6588 and is hosted by Jessi!! It's such a great cause, both the seizure cause, and the trades of hope!
www.mytradesofhope.com/parties/6588 ------------------------- We have a new fundraiser going on for Mickie to support her seizure response dog!! Please help us out, because hopefully she will be getting her dog in about 8 more months!! (fingers crossed!) The linke is below!
This is not your average Facebook party! This is a party with a PURPOSE! This one has many purposes actually! We are raising money for Mickie to be able to get a service dog. All of my commission will go to the fund for Mickie's service dog, which is 20%.
Trades of Hope products – jewelry, scarves, bags, home decor – are made by women from around the world who have been in extreme poverty, have been victims of forced labor or sex trafficking, or have illnesses that prevent them from working in a traditional setting. Trades of Hope partners with the artisans to provide them an opportunity to sell their products and establish sustainable businesses.
You can change the world just by shopping – your purchases will help our artisans feed their families, put a roof over their heads, send their children to school, and step out of poverty.
Be sure to shop at www.mytradesofhope.com/parties/6588 so that the credit will go to Mickie's fundraiser! This party will end on November 20th. Get a head start on your Christmas shopping! And a great big thank you to Jessi for helping to make this happen!!!! There truly are some amazing people in this world!!!
It's been a disheartening few days, and I can only hope it gets better, because at this point I've gone over her neurologist's head and I will be adjusting her medicine myself because I'm tired of seeing her like this. Last week we started her on her 4th seizure medication, Fycompa....a fairly new anti-epileptic that's indicated for ages 12 and over. And we followed the directions we were given. 2mg at night for one week, then 4mg. The first week wasn't too bad, she had some dizziness, and a little bit of double vision, but a lot of fatigue. She was maybe awake 10-12 hours out of 3 days, causing her to miss school. By Saturday, she'd gotten a little used to it, but she was still tired and slept a good bit. The problem is, I never knew whether she had seizures or if they were side effects of the medications, because the spacing out and the sleeping can be either one.
So, this past Monday, it was time to increase her dose up to 4mg. You would think that such a little dose wouldn't do so much damage, but it did. She struggled to make it through school on Monday, apparently having a seizure, and falling asleep in art class (one telltale sign for us is that her text messages are extremely jumbled). Luckily her homebound teacher was tutoring her after school and kept her awake with caffeine. ;-) But then she missed school on Tuesday because she slept through her alarm. After 20 minutes of her not moving, I finally turned it off and let her sleep. She didn't wake up until almost 11am, which means, she slept for over 14 hours.
So yesterday (Wednesday), luckily my boss had to leave, which means I didn't have any patients that afternoon. Mickie's nurse called and said that Mickie had thrown up and was pretty dizzy and just wasn't feeling well. So I went to pick her up and when I got there, she was sitting in a chair, just staring ahead. When she stood up, her legs were very unsteady and she looked very unsure of herself. So I had to walk her out to the car by holding onto her sweatshirt.
By 8pm last night, she was out like a light. She slept until a little after 4pm today, only waking up to use the bathroom once (which she struggled because of the muscle pain and the dificulty walking) and I woke her up at 7am to take her morning meds). Her pupils were dilated when I got home and woke her up, she was sweating, flushed, dizzy, her knees were buckling, she wasn't able to walk without assistance, and she's seeing double. She's also having hallucinations. Yes, seeing bugs.....and a dog...... I'm a mom....yes, I'm worried....if I didn't work in neurology, I'd probably be three times as worried, but I'm handling it. I am not liking the answers I'm getting, so I'm going to adjust her medication myself because I cannot stand seeing my baby girl like this. I've also made an appointment with a pediatric epileptologist. This way someone will actually take a concern with her and not use her like an effing science experiment. She's a patient and she's my daughter, not a guinea pig. I understand she's a complicated child with a lot of medical problems, but that doesn't mean that you just "guess" what to do and "roll with it". That doesn't fly in my world. My child doesn't need to be zombified on meds to the point where she doesn't know where she's at and it makes me frustrated to the point where I actually broke down at work....twice today. I hate doing that. I'm supposed to be focusing on my patients....not worrying that my daughter is okay at home. I hate having to rush home before my husband leaves to make sure that Mickie's not alone....
So will keep you posted on how everything goes. She's been awake for about 2.5 hours right now, but she's getting drowsy again. I'm holding all of her medicine tonight, debating on whether to hold her meds tomorrow morning as well.......it's reallly a Catch 22, but I'm going to decide what's best for her. It's only a few weeks away, we'll get her well again!!
In the meantime, please share her pages, we really need to continue raising money for her seizure dog, it's been so discouraging knowing that her fundraising has halted, and we still have almost halfway to go. Even if people donate $1 and share with everyone, we can still make it!!! Thank you to everyone who is praying and supporting us!!
This past week alone has been difficult, as she's had three doctor's appointments, 2 of them were unexpected. Mickie's had poison oak for 4 weeks now and despite the three steroid creams, calamine lotion, and prednisone, nothing was helping. So today I took her to an urgent care and it had already spread to her fingers and her waist, which made her even more miserable. We decided to give her a shot of big steroids to try to knock it out, followed by 80 mg of prednisone for 5 days. Whew, she is going to be an ass with those! (sorry, being honest, but anyone who's been on that high of a dose knows what I'm talking about!). Hopefully we'll get rid of this oak. Until then, she's not allowed outside, and if she does, she needs to wear pants and long sleeves.
Now to squeeze some good news in.......Mickie was able to get up on Saturday and test at martial arts....she DID PASS and receive her Level IV, 1st degree black belt!! I am so extremely proud of her!! If she stays on track, she'll be a 2nd degree black belt in December! She's such a champion, no matter what happens or how she feels, she still tries to make it!
Now for some more bad news....Mickie has no memory of what's happened last week. Why? Because she's had at least 7 seizures this month, if not more. Does she tell anyone at school? No, of course not! I try to tell her it's okay to tell someone, but apparently today one of her friends was trying to get her attention and said she was just staring off and wasn't answering him (obvious sign). Then when I picked her up from school to take her to the doc, she was sound asleep within 5 minutes....fell asleep again in the waiting room chair, then spaced out while the doctor and I chatted (we had mutual friends lol). I feel like the VNS is giving her no benefit what-so-ever, with the exception of the fact that she's not sleeping 24 hours after every seizure, but she's still having a good amount.
So we followed up with the neurologist yesterday....he's leaving her VNS at the current settings to let her continue getting used to it. He doesn't want to decrease the time to 10 or 15 minutes because it will just irritate and hurt her even more, which I guess I understand. Now keep in mind, she's on 600mg a day of Vimpat, 600mg a day of Lamictal and 200mg a day of Zonegran. Now here comes the 4th seizure medication, called Fycompa, which she'll take at night, increasing the dose by another pill each week until we see him again. This med has the weirdest side effects to where we really need to watch her, especialy when it peaks in her system around day 3-4. Check out these side effects:
Pretty scary, huh? Yeah, that's what I thought. So, considering she's in school 7-8 hours every day, I did do the responsible mommy thing and email her teachers with these side effects and told them if she had any problems, especially with the balance, memory, etc, to please call me immediately. Something tells me it's going to be a rough road for awhile.
Now with the seizure dog.....as you can see, we have severely and completely stalled on the donations for the dog. I have tried calling Skate World, you can't reach them if their building was on fire!!! I tried to leave a message on their party line, the stupid mailbox was full! So I called Hamilton Skate, left a message for them, waiting to hear back. Left a message at Pin Strikes, never heard back. Was supposed to meet at Holiday Bowl, but I had to cancel last week because Mickie had her seizure/poison oak episode, but somemthingi s going to tell me it's gonna be a bust because ofthe expense. Even though I've lived down here for six years, I DON'T HAVE THE CONNECTIONS!!! I don't know what to do, I really want to give up, even though I know this dog will help her trememdously, even though I know she's slowly starting to get worse, and I'm afraid she's starting to get brain damage from all the seizures. She's such a beautiful girl--so intelligent, friendly, independent, reliable, and a true sweetheart. She didn't deserve any of this, so I want to make this as easy for her as possible. And if it means losing something I own and cherish to get it, then that's what I have to do.
If anyone has any ideas on what we can do to raise money, please let us know. We are halfway there, and we're already using her Christmas money to put toward the dog, so she knows she's not getting a Christmas this year. I think (at least I hope) she's accepted it.
Will keep you posted. She's been sleeping pretty much since I picked her up at 3:30, so I may just camp out with her on the couch tonight and go to work a little early tomorrow. Lord konws I have over 100 charts to file from the past two days!! ;-) Thanks for letting me vent!!Crying behind a computer screen is so much easier!
I'm going to keep this short because it's already late and I'm exhausted! We've had ups and downs, but hopefully we're getting back to "stable" again. Last Thursday, Mickie texted me from school saying that "something wasn't right" with her VNS. She was getting a lot of pain in her neck when it was going off, and the pain was going up in to her head. So her neurlogist (I'm so glad I work with him!) told me to go ahead and get her up there to take a look at her. As soon as she walked in, we knew that she'd had a seizure. She looked soooo exhausted and just had no energy. He played around with her VNS for a good 20-30 minutes, shocking her about 5-6 times to find out what was going on. Each time it went off, she grabbed her neck and started crying. To this day, we still have no idea what happened. There was no malfunction, everything appeared to be working okay, we're thinking maybe she was just sensitive. So he decreased the amp on it for a little bit to get her used to it and we'll adjust it again on the 13th when she goes back. She had another seizure sometime that evening, because she slept until 10am the next morning, which was good. She really needed it. Other than that, she's been doing okay, the VNS seems to be stabilizing with her. When it goes off, her voice still vibrates, but we're getting used to that too.
We were supposed to make our trip back to the ENT at Vanderbilt next Tuesday to schedule the septoplasty, but the mupirocin ointment seems to be working, as she's only had one nosebleed. So I emailed the ENT and told him we'd like to hold off on that surgery for now and I'll let him know if she gets worse. He's awesome like that, and all I need to do is email him and he gets her right in. Love that doc!!
Mickie's grades are....well, there. She's slipping in a few subjects, but I'm jumping on her right away to make sure that she makes up those tests and fixes everything within a few days to get them back up again! Especially since fall break is coming up, the last thing she'll be thinking about is school!
Fundraising is basically at a standstill for the dog. It is extremely depressing and discouraging right now. We are trying to use our own money, but we've even fallen behind on our major payments trying to take care of the dog issue, and now we're getting in trouble. I've tried contacting a few places to discuss fundraisers, but I'm not having much luck. People have a hard time in this economy, it's understandable. I'm trying to do what's best for her, but now I'm wondering if this is going to be possibe. We still have a long ways to go :-(
Anyways, that's it for now!! Please share her pages with your friends and family and send any ideas my way!!!
Happy Saturday! Oops, nevermind, Happy Sunday!! Starting off a fresh week, beautiful fall weather ahead down here in Georgia, and hopefully a great week for Miss Mickie Faith! Our second installment is due on Tuesday for her seizure dog and it has been sooo difficult raising this money. We've even put our bills aside to put into her seizure dog account because I know that this dog will change her life dramatically, and for the better too. So as parents, we're going to make sacrifices. It's okay. She more than deserves it and we'll do anything to make sure she gets what she deserves (occasionally it could be a smack upside the head for that pre-teen sarcasm, but that's another update!).
She's been doing fairly well. I think she's only had one seizure in a little over a week that I can tell, and that came from too much noise and flickering lights, but she recovered fairly well from that. So far, she's had five (known) seizures this month. A little better than last month, but not where I want to be just yet. When she does have them, they're getting slightly stronger in the sense that we're starting to really tell by her symptoms. Which only makes me more nervous that it's a matter of time before she starts slipping into grand-mal before the dog gets here--I'd rather that NOT happen!!
We see neuro in two weeks, so we'll probably do some more adjusting to medications again, and amp up her VNS again. When it goes off, she does a little better with the breathing, but her voice still vibrates for a good 1-2 minutes afterwards, which can be kinda cool. ;-)
Mickie had her 6 month trip to the allergist/immunologist this week, she's finished Vial C of her allergy shots, and will be starting Vial D, which is good. She's responding well, but with her nosebleeds and her EoE, we're adding a new medication to keep her from slipping up and getting sick again. What's another new drug, right? It's all good though. He didn't even charge us for today's visit, he told her to keep working towrds that dog! He's sooooo sweet! Her nosebleeds have also done well since ENT put her on the antibiotic nasal ointment, so if she continues to do well, I can convince him to hold off on the septoplasty for a while longer. We won't be able to hold off on the endoscopy up in Knoxville though, but I'm just uncomfortable with her being under general anesthesia duplicate times in 6 months, ya know? I work in neurology, I know the side effects.....she's already got enough problems....no more, thank you!
School is going well, she is getting A's and B's so far! Struggling a little bit, especially with retaining information, so we're working on some methods to help with that. She loves art and agriculture, and hopes to try out for soccer and join the karate club!
Martial arts---what can I say?? SHE'S BACK!!! After four long months, she started back a few weeks ago, and we're trying to get our classes back before her next testing date in 10 days. She'll be testing for her Level IV, 1st Degree black belt....then in December, she'll test for her 2nd Degree black belt. I'm so freaking proud of her!! She's had to remember a lot of things after being off that long, and she's struggling, but she has great friends who are patient and showing her what she needs to know, and her instructors are, of course, protective of her and eager to get her back on track!!
I think that's about it, it's been extremely stressful, we attempted to set up a fundraiser for bowling, but after an hour of waiting and no one showed up, Mickie ended up having a little seizure and we had to leave. Maybe we'll try to do it again, because she loves to bowl, and it would be fun! Right now, we're selling lollipops for her dog and those have sold extremely well, so I thank you to everyone who has been so sweet and bought from us to support her. Any suggestions on fund raising or want to help out?? Let me know!! It's has been a very long month! I still don't have my energy back from being in the hospital, and that could take another 4-5 months, and the cold months always make you feel more tired anyway......I could pray for more money, more energy, a healthier kid, and more hours in the day!!!
BE ADVISED!!! OUR NEW FACEBOOK PAGE IS www.facebook.com/groups/fighting4mickie Please click on the link and request to join and you will be accepted with 24 hours (usually less). We closed the original group due minimal pfivacy/stalking issues. This new groups is closed, and we are able to monitor who is accepted and how her pictures are distrubuted. Please join so you can follow Mickie for updates!
Next order or business.......fund raisers!! We entered Mickie into a photo contest because I happened to take a picture of her when she'd just come inside from playing football with a few neighborhood kids (yup, she's a boy, told ya!). She'd just pulled her hair out of a ponytail, and of course I grabbed my phone and snapped the shot.....it turned out beautifully! You can barely see her scar, hidden by the hair, but she's so proud of it--she doesn't want to put any Vitamin E on it, and she calls it her battle scar. So I entered her pic into this contest in the pre-teen category on 9/19. Just since then, she's gotten over 140 votes!! I urge you to click on this link, vote for her picture, then share the page with your family and friends! This can be voted on with a phone, laptop, ipad, etc--you can vote on all of your devices once a day!! Here's the link: http://www.thecutekid.com/photo-contests/20140919/cute-little-kid-1411179392
Next: we've decided to start selling lollipops for MIckie's seizure dog as well. There are 576 lollipops in there, mega-round shape, and 12 different flavors! For our friends that live out of state, for a flat rate of $5.00, I will ship them in a box so they don't break! I just ordered the lollipops today, but we've already sold 140, so get yours now! We have people using them for Halloween treats, school treats, rewards at home, etc. It's great! They are only .75 each, so feel free to mix and match, you can message me on facebook or email me with what you'd like.
Lastly, I will be meeting with the entertainment manager at Holiday Bowl in Chattanooga, TN this Thursday to discuss holding a bowling fundraiser one weekend coming up to benefit Mickie's seizure response dog. I would really love to see everyone there, including meeting our supporters online--it would be great to match faces to names!! I will keep you all posted with the details once we get it ironed out!
With all of this going on, I am completely exhausted. Don't get me wrong, I'm by no means a single mom (well, yes, during the week lol), but everyone knows (including my amazingly wonderful hubby), that I HATE asking for help. I was in the hospital a few weeks ago, I was told to get rest, and I went back to work sooner than I should have. They docs said it would take at least six months for me to feel like normal and get my energy back again, and they're right so far. By the time I get home, I just want to sleep!! But I just don't have time! I can't stand asking for help, because if I don't do it myself, I feel like it hasn't been completed and it makes me nervous to think that something's not done. Can't help it! ;-)
As with Mickie, she is my true little fighter. No nosebleeds since we went to Vanderbilt, which means the antiobiotic ointment is working so far. No seizures that I know of for a week, which is great!! Still honestly debating on calling down to Emory for a new neurologist--it's very difficult and emotionally it's hard to do because it's almost like a conflict of interest. I work there, but at the same time, I don't want my daughter treated like a guinea pig....we've got to get her seizures under control because as she gets older she's gonna start getting her cycles and that's when he's thinking the grand mal seizures are going to start.....that will NOT be good. If she can hold off on those until she gets the dog, we may okay lol.
We have an appointment with her allergist this week. we haven't seen him in six months, which is GREAT!! She still gets her allergy shots twice a week, so for once she's doing okay in that area!
She'll be seeing GI in November to set up another endoscopy to see if the Flovent coating her esophagus has been helping. I honestly think it has (prayer helps), because if it hasn't, she'll be getting her esophagus stretched every 3 months).
I think that's about it for now, she's doing well in school, she has all A's and 1 B!!! I'm super proud of my girl, andin just three weeks she'll be testing for her Level IV, First Degree Black Belt! Oh, she's costing me money! But there's nothing we won't do for our baby! If I can manage to get some rest and stay out of the hospital and work extra hard, we'll be able to raise the funds we need for Mickie's seizure response dog, which hopefully will become a member of our family next summer!! Less than a year away!! it's so exciting!!!!!!!
Happy fall to everyone, and please help out with her fundraisers if you can!! Contact me if you have any questions!!!!!
REMINDER: WE WILL BE DE-ACTIVATING MICKIE'S CURRENT FACEBOOK PAGE ON 9/20 AND WE HAVE OPENED UP A NEW PAGE!! THE NEW PAGE IS PRIVATE/CLOSED, BUT ALL YOU HAVE TO DO IS REQUEST TO JOIN AND YOU WILL BE ACCEPTED. WE ARE CONCERNED WITH HER PRIVACY AND WOULD PREFER TO KEEP SOME THINGS PRIVATE. THANK YOU FOR UNDERSTANDING!! HERE IS THE LINK!! www.facebook.com/groups/fighting4mickie and we have just posted a new update!!!!
Whew!!! One of the longest days in awhile!!!! I took Mickie to Vanderbilt today for a visit with her ENT...he's awesome, we can email back and forth without having to take trips up there and he's very understanding with her issues. Mickie's nosebleeds have unfortunately been on the rise again, averaging about 3 per week, lasting about 1/2 hour each time. For some reason, she's having seizures when she has the nosebleeds too, but none of the doctors can make a link between the two.
So, we chatted, talked about a couple of surgeries and decided that we are going to try one month of antibiotic ointment up her nose for two weeks, followed by saline spray irrigating 3-4 times a day and Amicar if needed (this is the "chemo-like" medicine where she'd have to take 84 pills in 5 days and it makes her extremely sick--don't wanna use that). We have to go back to Nashville in one month, and if she's no better or if she's worse, then we're going to go ahead and do a septoplasty. We discussed sinus surgery, but we want to give the allergy shots one more year for it to kick in before we proceed with that.
It was a long drive up and back. I've only been out of the hospital for two weeks, it's a 5 hour round trip drive, and I will be honest, I've been completely exhausted because I went back to work earlier than I should've, so on the way home, I literally ran off the road twice because I started to fall asleep. So I pulled over, took two pills that my doc gave me to help with energy, and chased it with a 20z of Coke.....Mickie and I walked around our favorite store for a bit until everything kicked in and I was good to go......all good
Unfortunately it hasn't been the best day for Mickie. I took her to work with me today so I wouldn't have to leave work, rush to her school, pick her up, then rush to Nashville (waste of gas). However, she was sitting over in the corner on the floor in front of my charts, coloring some pretty pictures, next thing you know, she was sound asleep. Luckily she didn't sleep for long, but she ended up taking four naps during the entire day, which is not like her at all. The ENT said that he knew a pediatric neurologist at Vanderbilt, so I may consider trying a new neurologist---I just want my little girl back......
So that's up to date so far. We've completely hit a brick wall on our fundraising for the dog. Yes, I'm beyond upset, but right now, I have to focus on getting myself better, otherwise I'll be no good to anyone. People keep asking if I've asked a church to donate. We've gone to three different churches over two years and I was NOT impressed. Nothing but politics and money. That's not what I want. I want emotional support, prayer, love, friendship and laughter. So if I have to pull the other $6,000 out of my butt and that means we don't get a family vacation next year or Mickie doesn't get a birthday trip, then that's what's going to happen. I've already told her that Christmas is going to be bad because a lot of that money HAS to go towards the dog and the dog is basically her present...albeit delayed, but it will be her present....and tears well up in my eyes as I type this paragraph. Sometimes I feel like I made a huge mistake by doing this, but I know this dog will help her so much in the long run.
I think that's it! She has school pictures tomorrow, then no doctors till next Thursday, so I get a little break (I think). We're both fighting off poison oak, and luckily we keep a pharmacy stocked in our house of everything we may need for whatever purpose!!!!!
Please remember, this is Mickie's new page, so please share with your family and friends, we will deactivate the other account on 9/20. This page is a private, closed group and we are more comfortable with that at this point. Thanks and have a great day!!
Starting up this special Facebook page for Mickie before we shut the other one down...I'd feel more comfortable with a closed group where not everyone can have access to her pictures (due to her past history, we had someone's rights terminated, family stalked, etc).....so if you would like to keep updated on her, please click on this link and request to join the group. I'm still new at setting up the page, so bear with me!!! https://www.facebook.com/groups/847056301995717/
We ended up making an unexpected trip to the neurologist this morning because Mickie's VNS has been acting up and causing problems......every time the VNS has been going off, her voice vibrates and she's been having trouble breathing. Plus, with four seizures in two weeks, we needed to fix it......
So.....we had her appointment this morning, and he was in the room for a good 45 minutes with us, because he actually heard her voice and saw her trying to catch her breath when the VNS went off and said, "Oh, that's not good".....well, duh!! lol Considering her settings weren't that high, we went about re-setting it and tweaking it, and it seems to do a little bit better for now. She has to go back in about 4 weeks to re-check it and try it again.
Meanwhile, she brought up an event that happened at school yesterday, apparently she has some pastel index cards that we bought her (pink, orange, green, etc)....she was in class and was trying to read off the cards and when the teacher called her to read out loud, Mickie wasn't able to read the cards....her vision wouldn't cooperate with the cards, which made her freak out a bit, causing the teacher to think she wasn't paying attention, therefore giving her a warning. The doc said she had "retinal fatigue" and is no longer allowed to use pastel index cards......so back to the boring white cards.......
By the time we finished in the room, it was too late to take her to school, so I let her stay with me at work and actually put her to work......filing, pulling 80+ charts, faxing, copying, etc. She helped everyone out today!
Meanwhile, we'll see how everything goes, her nosebleeds have picked up, can't find a correlation between those and the seizures, but we see the ENT at Vanderbilt next month .
It's been one of the worst weeks in awhile, not so much for Mickie, but for myself as well. I don't think she's had any seizures since the bad ones last Friday night, but it's been so hectic, sadly I really didn't get a chance to notice. The great thing is that when I started her back on the Zonegran, she's had no side effects like she had back in May, so we're going to keep her on it and hopefully that will help with the seizures!!
Meanwhile, Matt had taken my car up to his dad's house in Knoxville last weekend to get brakes fixed. We can't afford to have the car fixed at an actual repair shop, so Matt bought the brakes and his dad helped put them on....a real money saver there! Anyways, Mickie and I were stuck at home, because I can't drive Matt's car (stick shift), but we made the best of it. I'd been having chest pains on and off all week, along with a little trouble catching my breath. Normally I'm all over the place, bouncing around at work, taking the stairs (12 flights) in the evenings, and playing tennis with Mickie By the time Matt got home on Sunday evening, I didn't say anything to him, but I stayed in the recliner so I could sleep sitting up. Monday morning, around 2am (Labor Day), I got up to go to the bathroom and noticed that my feet were extremely swollen. I've never had that happen before, not even during pregnancy, so I figured I just needed to elevate them. No redness, no heat, just swollen, so I was pretty sure it wasn't a blood clot. Sat back down, propped feet up and tried to go back to sleep. Didn't work.
At 6am, Mickie had been awake with me for awhile and she kept watching me because I just couldn't get that breath I wanted. Finally I told her to take her morning meds and go back to sleep, I had to go to the doctor. I went in, woke Matt up and told him I needed to go to the hospital now. He knows that if I go to the hospital, something is really wrong. Sure enough, by the time I got there, my chest was killing me, I was struggling to breathe, and I was so dizzy I thought I was going to pass out. They took me back immediately, the doctor came in, drew labs, listened to my symptoms and sent me for a CAT scan of my chest. Sure enough, he comes back and said my cardiac enzymes were very high and my CT showed numerous blood clots on my lungs (pulmonary embolism). They started me on Heparin IV immediately and admitted me, and said if I'd waited much longer, I wouldn't be around (that kinda scared me). So I cried, because I would be missing work, I didn't want to be away from my family, and I hated hospitals.
Before they took me up to my room, I had to go to the bathroom. I'd been sitting in the bed at the ER for about 3 hours now, and the bathroom was right outside my room. As soon as I hit the hallway, the pain intensified considerably. I broke out in a huge sweat, the nausea came from the pain and I couldn't even stand up straight. Of course it freaked the nurse out, and she tried to get me to go back to my room, but my stubborn ass was NOT using a bedpan. I begged her to let me go to the bathroom and she gave in lol. Right after that, I ended up on morphine every 4 hours, which definitely helped with the pain.
Enters the cardiologist--once I got set up in my room, she comes in and says they're going to do an echo and an ultrasound of my legs to find out if there's any clots in my legs. She said I need to keep the oxygen on in my room and be cautious when I stood up. yeah, okay.....Matt and Mickie came back to visit me a little later on, but Mickie sounded like crap, and you could tell she didn't feel well. She was really stuffed up and congested, so I didn't make them stay long. On Tuesday, Mickie had gotten worse, but tried to make it to school....only made it about 2.5 hours, then Matt had to go pick her up. It's so hard to deal with her over the phone, but we managed, and luckily we keep antibiotics on hand for this sort of thing, so we started her on a z-pak and sent her to bed. She ended up missing Wednesday at school too, but she knew that if she was sick, she couldn't come to the hospital....she'd either get sicker, or she'd make patients sick. I know she was stressed out because I was in the hospital and she couldn't see me, which made it worse for her too. And Matt was so tired, because he had to work, doesn't get home until 2am, back up again at 7am to take her to school, pick her back up at 3:15, then back to work at 4:30, repeating the process.
I had my tests done, and the cardiologist comes in my room on Wednesday and said that she's not sure how long the clots have been there, but I let it go so long that it actually caused damage to the right side of my heart. It may take months for the damage to be repaired, but it is possible without overdoing it. I will have to be on blood thinners for the rest of my life. Had I waited much longer to come in, I wouldn't have been around. It was kind of a reality check to hear that, because I'm so used to putting myself on the back burner and getting everyone else's problems solved first. Either way, I got to go home that afternoon, but I was placed on strict bedrest for the next five days to give myself time to heal. I'm allowed to go back to work on Monday, but I'm soooo exhausted and have no energy, I know it's going to be a draining day. I still have chest pains, I still struggle to get that breath in, and it's going to take a LONG TIME to get back to normal. The clots won't go away, and it won't prevent them from coming back. I just need to work on it.
Mickie and Matt have both been my rock this week. Yes, I can't stand people who continue telling me to relax and it's my fault it got so bad because I didn't take it easy. People have not walked in my shoes.....it got so bad because no one even knew I had clots in there. I had just been to the doc a month ago with the same symptoms and when the EKG showed no blockages, we both assumed it was just stress. I will ALWAYS put my child first, and to hear people say "it won't do Mickie any good if you're not there for her". I'm trying! Unless people want to pay my co-pays for the doctors and pay my bills that I'm now behind on since I missed a whole week of work, I really don't need the criticism. I just need some support. I've already faced reality. Yes, it's basically a miracle that I made it this long with a highly dangerous clot, and I'll have damage for months until it hopefully fixes itself, but I'm one person who has a lot on her plate.
As for Mickie--she's feeling better, only has one day left on her antibiotic, but she's pretty tired in the evenings. I was supposed to take her to Vanderbilt next Thursday to the ENT to discuss nasal surgery, but there's no way I can sit in a car that long at this time, so I pushed it back till next month.
I think that's it for now, thank you to everyone who texted, called, messaged, etc to check up on me, I sincerely appreciate it!! Now I just need a fairy godmother to help me catch up on my bills before I really have a coronary!! lol Have a wonderful weekend! At least have some fun for me since I'm still stuck in bed!!! -_-
Mickie's fundraisers endtomorrow (8/31) at 11:59pm!!! Just over 24 hours left to stock up on your Scentsy products.....OMG those fragrances are to die for, but I felt such a sense of calmness while I had my candle warmer running! Her other fundraiser is her t-shirt, which she designed herself....putting so much hard work into it that she had stayed up all night and had a seizure that following afternoon.....ya gotta love her determination!!!
We had a really bad day yesterday, and we're not even sure why. She missed her first school day on Tuesday, primarily because her neuro had adjusted her VNS by increasing the amps again and having it set to go off every 30 minutes instead of every 60 minutes. However, she was back on track by Wednesday, and got caught up on her work.....realizing that it's not easy being a 7th grader!! You actually have HOMEWORK! AND QUIZZES!!!
Yesterday (Friday) was different....and I have yet to figure out why. We did martial arts on Thursday (she finally went back last week for the first time in four months), and her instructors are so protective of her, we're still learning what she can and cannot do. Anyways, we had also tried her on Zonegran again--this is the same medicine that put her in the hospital back in May when she was in Gatlinburg for her birthday. We started it the same day last time too, and it peaked in her system on Saturday afternoon, causing us to wind up in the hospital by midnight that night. However, it's Saturday evening and she's okay so far! (fingers crossed)...okay, back to Friday. She texted me right before I left for work and asked if she had to go to martial arts--I told her no and asked why, and she replied that she was having nausea and chest pains and was just tired, so I told her we could stay home, but I needed to go to Food Lion first to stock up on groceries (Matt was taking my car up to his dad's to fix my brakes and we were going to be without a car the whole weekend) and I was gonna pick her up.
So I picked her up around 5pm and we headed over to Food Lion and got what we needed. No sooner had we pulled out of the parking lot and headed home, she got very quiet....I look over and her eyelids are twitching and she's struggling to keep them open. By the time we got home (less than a 10 min ride), she was sound asleep. I got her inside, got all the groceries and got her to eat a little something. She got up, went outside to the car, came back in and did it again. I look up and she's standing at the end of the couch, mouth open, no words, no blinking, staring at the TV for a good 1-2 minutes. I didn't say anything to her (I never do), but she all of a sudden was on the couch and sound asleep. So two seizures in less than 2 hours of each other. That had me a little worried.......enough to the point where I actually stayed up until 5am today, watching on her every 20 minutes. She slept on the couch, I slept on the recliner.
Needless to say, Mickie slept 12 hours without waking up to eat or go to the bathroom. When she woke up, she was a little groggy, but as the day progressed, she became more alert, and more active. By the time I'm writing this, she's back to my old girl again......jumping on my couch, singing along to the music videos, etc. Right now, I'm optimistic about the Zonegran because she's not showing any side effects that she'd shown back in May, so I'm hopeful!
I think that's it for now, we're still working with SIT Service Dog organization towards getting Mickie's seizure dog and they're so helpful and amazing with us!! Please share Mickie's links (below) for her fundraisers because there's just over 24 hours left to buy yourself something pretty and help a beautiful little girl get the help she needs through an amazing animal!!
Mickie's been in school for 8 days now and I'm happy to say she's only had to come home early twice and has missed 0 days so far!! Yes, I'm thrilled, it's a huge accomplishment!! She did have 2 nosebleeds and 2 seizures this week, so I have threatened her that if she has another nosebleed, she's going to get the Amicar, which is the chemo-like drug that she had to take last year (it really hit her hard). Luckily we see the ENT at Vanderbilt next month, so I think we're going to proceed with the surgery to try to stop the nosebleeds.
As far as the seizures go, she's had at least four (that I can count) this month, and we see the neurologist on Monday, where I'm sure he'll once again "amp up" her VNS, and I'm very tempted to try her back on the Zonegran because I'm so tired of seeing her go through this. It's really disturbing, however, the one good side out of the VNS (the only one I've seen so far) is that it has cut down on her post-ictal time. Instead of her sleeping 24 hours after a seizure, she's only sleeping about 4-5 hours. Pretty good.
I'm thinking.........I'm thinking........nope, I think that's about it!! Here's to a full week of school with no early outs and no missed days!!!! ;-) Hope everyone has a fantastic weekend!!! Cheers!!
Less than 17 days left for BOTH of Mickie's amazing fundraisers!!!! Please PLEASE help us raise money towards her seizure dog fund!! Share these links with your family and friends, so they can get some great deals!!! https://laurelcroft.scentsy.us/?partyId=249678495 is for the Scentsy products (oh, absolutely amazing!) and make sure you click "A Seizure Dog for Mickie" when you check out so the proceeds will go towards Mickie's fund!! The second website is www.booster.com/support4mickie. All size shirts, designed by Mickie, from sizes Youth XS to Adult 4X!!! Shirts will be shipped within 2 weeks after fundraiser ends!!!!
We met with Mickie's teachers today, and while I expected to meet with the lead teacher, our lovely front desk receptionist (who we ALWAYS deal with when Mickie is sick) and the principal, I ended up meeting with six teachers, gym teacher, principal, assistant principal, 2 guidance staff, front desk, homebound, art, agriculture, and I'm sure I'm missing one or two others......and I am by no means a public speaker, so yes, I was put a little on the spot!
I am very optimistic that we will have a great year because the meeting went awesome. Everyone asked the questions that needed to be asked, I explained Mickie's background (that took enough time in itself), and we demonstrated how to use her magnet on her VNS. I stressed the importance of how she is ambitious and I stay on her to complete her work and get it done right, and yes, they were surprised that she missed so much school last year, so we're in a way preparing for another repeat of the same year. Considering she's had a great summer, I can only keep my fingers crossed that she keeps it up.
I got everyone's emails though, because they now know that I strive on communication, and since last year pretty well sucked with that, I'm hoping things will be very different this year. She's in inclusion classes, meaning there's two teachers in a couple of her classes, so I think that it will work out nicely for her.
She's still adjusting to the amping up of her VNS from Monday, since it goes off every hour, she's still coughing and clearing her throat, so I'm hoping she's not too sensitive to it. We really can't knock it back, otherwise it defeats the purpose of having it. See, it just went off again......it's kind of cool when her voice vibrates though!
We have about 3 weeks to go on both of her fundraisers, and we really need to sell these shirts to help out with her seizure fund!! Also, we have a wonderful friend doing a Scentsy fundraiser, and I've never had Scentsy before.....well, I ordered from Scentsy....hey, gotta support my daughter! (as if I haven't done enough already!).....and I got my stuff last night......O M G......it smelled WONDERFUL!!! I got these warmer melt bars and one was called "bring me back my bar" and it's like a coconut palm scent....oh, I just about died and went to Heaven!! Can't wait to warm it up at work next week!!!
Anyways, hope everyone has a great weekend, can't wait for school to start next week! We soooo have to get back into the groove of things!!
We will be extending Mickie's t-shirt sale until 8/31/14 because we would really like to hit that goal of 50! We will also be adding ladies' shirts to give you an option between that and basic unisex sizes. Please share her page so we can get these shirts sold!! www.booster.com/support4mickie
We also have her other fundraiser, Scentsy (YUMMMM), that ends on 8/31 too, so that works out great! Just make sure when you check out, that you click on "A Seizure Dog for Mickie", so the proceeds benefit Mickie. The website for that one is https://laurelcroft.scentsy.us/?partyId=249678495.
Thank you all so much for your support again! We are really working on meeting these deadlines that the next payments are due for the seizure dog, and our next one is due mid-October....... -_-
We currently have TWO fundraises going for Mickie at the present moment, and we encourage you to check out both!!! At the advice of a great friend, Mickie decided to design her own t-shirt and sell it. So she did, and I'm extremely proud of her! She stayed up late both nights and we worked almost the entire weekend to get it just the way she wanted it! It looks TERRIFIC!! We must sell 50 shirts by August 19th, or no shirts will be made, so please help us out!! If we can sell all 50, we will make over $500 towards her dog fund!! The picture of what the shirt looks like is below! Her link is www.booster.com/support4mickie and the available sizes are from Youth XS to Adult 4X.
Her second fundraiser is through another great friend, and it's an amazing Scentsy fundraiser!! So many scents and items to choose from, it's so hard to decide!!! 25% of those profits will go towards Mickie's fund as well, and this fundraiser goes through August 31. The link to this one is https://laurelcroft.scentsy.us/?partyId=249678495
If you have any questions about either one, please contact me!! I also highly encourage you to share these links so we can make sure she shares her story and we get as many proceeds as we can towards her fund! I'm happy to say that we finally mailed the contract back to the dog organization today! Counting down now! Our next payment is due in 3 months! YIKES!!!!
I am wondering......if Mickie were to design her own t-shirt (with my help) and sell them to raise funds for her seizure dog, how many of you would step up and support her?? We've been working on this fundraising for about 4-5 months now (for the dog anyway, before that we had been raising money to tackle the medical bills--yeah, those went on the back burner), and I have been seeing people commenting and sharing her page that I never would have expected to, and the people that I really wanted to count on, close friends, family ------nothing......it reallly tugs at your heart, it's like saying, "she's just not good enough for it.
Yes, I will be blunt. I've busted my ass to get these funds raised for my daughter. This is probably one of the most important things in her life. Next to her VNS, this seizure dog will be what she needs to live her life normally. She won't be afraid of being alone when she has a seizure. She won't be embarrassed when she has a seizure because someone will always be at her side....whether it be Mommy, Daddy, a 2-legged best friend, or a 4-legged best friend. And these friends require a lot of the training that's costing this kind of money.
The one thing I haven't expected is people I haven't ever met before approaching me and offering to do online fundraisers and contributing part of the proceeds to Mickie's fund!! I mean, just knowing that there are people like that still out there, not even in the same state, never met you, would go to all that trouble so your daughter can have the one thing she needs that we can't pay for. It's truly heartwarming.
Speaking of, the online fundraiser is https://laurelcroft.scentsy.us/?partyId=249678495 and it's a Scentsy fundraiser. Make sure you go to the top center of the screen and click on Mickie's fundraiser so the sales benefit her!! The fundraiser will continue through 8/31 and we are so excited!!
Once again, for everyone that has been sharing her page, THANK YOU!! We are halfway to our goal and the little bit of interest is being thrown in her savings account...3 cents here, 4 cents there lol. We still have her PO Box in case people would like to mail donations, but getting her story out there is just as important......we know there are children out there that have Myoclonic Epilepsy (or epilepsy in general); someone out there has Eosinophilic Esophagitis; someone out there has HHT and nosebleeds like crazy; and someone likes to break bones every six months! We have continued to make many friends from all over the world, and we'd like for YOU to help us continue to make those friends!
We managed to get out on one of our few rare times as a family, and we went to the Knoxville Zoo today! Mickie is still adjusting to having her VNS turned on, she knows when it sends the charge up to her brain because it bypasses around her throat, causing her to become hoarse and have to cough and clear her throat. But about 5 minutes later, she's back to her old self!!
Thought I would share some great pictures from today! I'm so proud of my baby girl!! And one of her BFF's, Sydney, is really like my 2nd daughter. These girls have known each other for probably almost four years now, and it's great to see them together!!!
Since it's been a week since I last updated you all on lil Miss Mickie, I figured I'd let you all know how she was doing. She ended up having to go back to the surgeon's office last Thursday because the incision under her arm was burning something fierce. When he checked it out, he said that the nerves had been cut during the procedure and they needed time to heal back. So she's just going to have to suck it up!!
Today we had an appointment with the neurologist. He turned on her VNS today and put it on the lowest settings, which are .25 and it's set to go off every 90 minutes, lasting for 30 seconds each time. He showed us how to swipe her, and there's no maximum number of swipes she can do. It's not too difficult, just not something a parent wants to see a child go through. But when he turned it on, you could tell immediately, because her voice became hoarse, she got a "tickle" in her throat and she was coughing. That went away eventually. ;-)
She hung out with me after work for while after her appointment and did a great job with filing, faxing and copying. May as well train 'em young!
We still need to get everything sorted out on the seizure dog. I'm telling ya, it's a process!!! The neurologist filled out a prescription for her to have the dog, so we just need to get our part of the contract notarized, and send it off with a video of Mickie having a blast with her life!
I think that's about it for now! Her next appointment will be next Thursday, about 2 hours away up in Knoxville. Her GI doctor relocated, but he is so good that we will follow him almost anywhere!! We'll have to get her endoscopy scheduled to see if her meds are working and healing up her esophagus....oh, I hope so!! Until then, we think Mickie has fully earned a trip to the zoo on Wednesday now that I have a little time off work this week!! Stress has completely overtaken my life and I could use a little relaxing! I'm never going to be able to completely turn my brain off, but it's worth a shot to try!!
Please continue to share Mickie's facebook page and funding page with family and friends!! We are 48% to our goal, which is absolutely amazing!!!! And yes, finally, tonight, we have finished our thank-you cards and packaged our beautiful sun catchers to mail out first thing Monday morning!! I think our donors will be very pleased at Mickie's amazing work!!
I'm sure you've heard the expression "I wouldn't wish this on my worst enemy".....well, that's exactly how I feel about what Mickie's gone through. The surgery was probably her biggest one yet.....her incisions are definitely going to leave scars because she can't take it easy as she's told, she plays too hard, then she hurts afterwards and wonders why.....well, duh!!!!
Surprisingly the steri-strips on her neck are still in place, so I can't see the incision just yet. The stitches are still under her arm and have not fully dissolved, which is good, because it can still continue to heal. You can feel the battery directly under her skin in her chest, which is kind of neat, but if she gets hit or anything, there could potentially be problems.....always thinking ahead, I guess! ;-)
The new problem that we're having is that she's being brought to tears by severe drawing/cramping/pain in her feet and calves. I felt so bad for her today because she continuously kept kicking her feet, trying to get them to stop hurting.....she would get up and walk around, stomp her feet on the ground, even put her feet in the tub for awhile. Eventually, I couldn't bear to see her in that much pain and ended up giving her one of her leftover pain pills from her surgery. Finally, she cried herself to sleep, but she was still moving/kicking her feet......poor thing.....I'm assuming it's her new seizure medication, so I've tweaked it and actually pulled her off of it for now...primarily because we've had nothing but problems with this new med. I increased her other two medications for a bit, but if her feet stop hurting over the next few days, I'll know it was the new med.
Mickie will get her VNS turned on around the 14th. Her neurologist has been out of town this whole time, and she'll be the first patient when he gets back in town.....It's going to be a little scary knowing that she's getting shocked every couple of minutes. I can only hope that it works, but it can actually take up to a year to achieve the desired full effect. I can only hope that eventually we can take her off of some of these medications, because my wallet is hurting!!! ;-)
Our next "adventure" will be doing another endoscopy around the end of August. It's been about 3 months since she's been on her Flovent for her EoE, and she's only vomited, maybe three times in the past six weeks, which is absolutely amazing for her! Normally she gets sick at least 5 times a week, so hopefully the Flovent is working! I'm debating on having her see a pediatric cardiologist to evaluate the hole in her heart to make sure that she doesn't need to do anything further.
One of these days, we're going to make the trip up to Gatlinburg to give her the birthday trip that she didn't get to finish the first time......Second birthday trip in a row that has been completely ruined........I think she just needs to stop having birthdays!!!
We hope everyone had a safe and happy 4th of July! Mickie is not able to see the huge fireworks up close, so luckily we were able to see them from our house....we also let her get some small fireworks and she did great....because she had to wear her seizure protection (aka sunglasses!)......it works!!!!
We are almost halfway to our goal, we can't stop now!! Please share the page with your family and friends!!! Mickie's now a week post-op and she's slowly making progress. I took her out for about an hour yesterday, and that's all she could handle. She's still having problems with feeling like she's going to pass out if she's up too long, and the incision under her arm has been burning/throbbing, plus her neck is stiff because she's afraid to move it and rip the stitches out. Not gonna happen, but it's her fear. Other than that, the incisions are doing okay so far. You can actually feel the battery directly underneath her skin in her chest, which is pretty cool ;-).
I'm going to try to take her to work with me tomorrow since hopefully I'll only be working about 6-7 hours, and one of my co-workers is bringing her granddaughter, whom Mickie hasn't seen forever, so hopefully they'll have fun and she won't get so tired!
Mickie is slowly getting back to working on her suncatchers, so please bear with us!! It's hard for her to sit at the table for more than 10 minutes without feeling light-headed, but we should have them ready to ship out by Saturday!!
And we've got our new collection jar ready to go for Miss Tammy!! She has been such a wonderful friend and has kept a special jar for Mickie at her store in Rossville, Charlie's Jewelry. We cannot thank her enough for her help and support and if any other businesses are interested in keeping a jar for Mickie, please contact us and we can make arrangements!!
I think that's about it!! I hope everyone has a safe and amazing 4th of July!! We're hesitant to let Mickie around the fireworks, because last year she ended up having a seizure, so we may have to don our gorgeous sunglasses!!! ;-)
Nothing cheers Mickie up more than getting get well cards from our family and friends!!! I'm not sure how it happened, but we miraculously jumped from 320 likes this week to 477 likes!!! Thank you all so much for sharing Mickie's pages and keeping updated with her story.....which honestly I hope someday gets boring, but not anytime soon! She loved getting the cards in the mail and seeing the beautiful notes written by people on the inside, it seriously melts your heart!!
We got our magnets from Cyberonics the other day, so we'll be setting up a meeting at her school at the end of July to get people trained on them, as I'm sure Mickie is the only one in the school with a VNS, so it will be new to everyone!!
She's still chilling out on the couch after her surgery, it's only been three days, but the incision under her arm is EXTREMELY swollen around the area, so I'm going to have to watch that over the next few days and put a few ice packs on there. I'm not sure which one she complains more about, her neck or under her arm, but there's no real sign of infection, so I guess that's a good thing. You can actually feel her VNS under her skin on her chest, which is a little sore for her, but when they mean they put it under the skin, they weren't lying!!
Once again, thank you all so much for sending get-well cards to Mickie, it really cheers her up to know that so many people care about her!!! We have just about finished the contract with the seizure dog organization, so we just need to get it notarized and get the letter from the doctor and we'll be sending it off with our first payment, thanks to our amazing donations!!
As you can see, we have amazingly hit over $5,000 in just a short amount of time, and we cannot thank you all enough!! We have just over $6,000 left to raise in the next 12 months or so, and I'm confident we can do it!! Please continue to share/like Mickie's pages to follow her story! www.facebook.com/mickie1inamillion.
Last night, we had some great friends stop by and give Mickie a "prayer cloth". We have been trying to make it to their church FOREVER, but Mickie just decides to have a seizure and can't ever seem to wake up! So the church decided to pray over this special cloth like they were praying over Mickie! They brought the cloth to us last night, and Mickie and I decided to perform surgery on Mr. Quackers, to put the cloth inside him, close to his heart. And that's the one Mickie took to surgery and kept close to her heart today!!
We had a very eventful day today, Mickie had her VNS implanted and I have my moments where I question if I made the right decision or not. It's just the whole "putting my daughter through this whole ordeal and getting cut on" process, but then you have to wonder, "okay, this will work, I just need to have faith and give it time and patience". So the surgeon took her back and made two incisions. The good part is that because she does the martial arts and she was nervous about people seeing her swipe her VNS in public (i.e., school), he decided to implant the battery pretty much under her arm instead of in her chest, which works out better for her, because she can pretend like she's crossing her arms when she needs to swipe herself. He then made an incision in her neck and ran the lead/wire up into her neck and coiled it around her vagus nerve. He turned it on to make sure it worked, then turned it back off again.
Mickie had a little trouble coming out of anesthesia, she got a little panicky, but they brought me back and we got her calmed down after they gave her an extra dose of pain meds. I felt so bad for her, and I tried so hard to hide the tears while she was awake. We finally got to head home around 6pm, and it was a rough ride home. She's not used to having incisions, so when she tried to raise her arm to put on her shirt, she remembered they were there.....and the tears were flowing.... :-(
So basically she's on bedrest till at least Friday or Saturday, she can have a shower on Friday, and the stitches will dissolve on their own. We'll go to her neurologist on 7/10 to have the VNS turned on and the first settings will be adjusted at the lowest to begin with. We'll learn how to use the magnets, and of course Mickie will have to wear one at all times, and almost everyone that she comes in contact with on a regular basis should have one nearby just in case. I do hope this works on her, but it could take up to a year to get the full effect and results, and it could help lessen the amount of time that she sleeps after a seizure.
I think that's about it! Sure, it's a little long, but hey, it's been a long, emotional day for everyone!! I have such a great support system, and I cannot thank our friends and family enough for being there for us, both in person and in thought!! We will keep you all posted! xoxo
For the third weekend in a row, we have dealt with wasting the entire weekend on nothing but sleep. Mickie decided she wanted to have a seizure on Saturday afternoon and ended up sleeping from about 5:30pm until 9:30am this morning. I even tried waking her up around 11:30 last night to see if she wanted to eat something or go to the bathroom. She just said no and went right back to sleep. I stayed up until about 5am, just watching her twitch and jerk in her sleep, until finally I couldn't stay awake.
Once Mickie woke up around 9:30 and decided she was going to try to sit at the kitchen table and paint a sun catcher. About 20 minutes into it, she wound up running to the bathroom to get sick......something she hasn't done since school let out a month ago. So, I gave her a phenergan and she was just too tired to sit back at the table......and back to sleep she went for about 2-3 more hours.
Her surgery is about 36 hours away. While I'm nervous, of course, because this is a procedure that's going to be with her for the rest of her life, I think that this is going to be very beneficial for her in the long run. I just want her to have her life back. She deserves to be playing outside on the weekends, not crashing on the couch with no energy and fading memories........
I would like to address something and I can only hope that this person reads it, because I want him to know how much he is disliked right now. When I got home from work on Friday, someone had donated $99.00 to Mickie's fund. So I logged in, and sent him a thank you note, telling him how much we appreciated his donation. Within 30 minutes, I get a message back that went something like this......"Your daughter may not need the dog because if she lost some weight she may not be having the seizures." This "man" (and I use that term LOOSELY), named Ned, royally pissed me off with that remark. If he has a thing against fluffy people, that's fine, and that's his problem. However, he does not have a MD stamp on his rear end, and his email sounded like nothing more than a pathetic advertisement. What's worse, he even sent it to the reporter who wrote Mickie's story! I was embarrassed, livid, betrayed, all at the same time!! Why donate money, then turn around and tell me that my daughter is having seizures because she's overweight? First of all, you opinionated bigot, my daughter is proportioned just fine and enjoying her pre-teen growth spurt. If anything, her weight gain comes from 60mg of steroids at least 4-5 times a year, which comes with the sad cost of side effects. Secondly, we don't own a game system in the house and she does not sit on her butt and do nothing unless she's had a seizure. We play tennis, walk through the battlefield, she rides her bike, plays outside constantly and does her martial arts. My daughter's issues are NOT related to her weight, by any means! YOU HAVE NO RIGHT TO JUDGE US!! And if you are so inclined, you may feel free to stop payment on your "tainted" donation, because I think you are nothing but a hypocrite. I'm sorry if you have a "THING" against FLUFFY people, but you don't know us, you don't judge us, and unless you have a doctorate and intend on treating my child for free, don't comment anymore! My child will get her dog, one way or another! I will not let losers bring us down!
Okay, got that off my chest!!! Mickie is all caught up on her sun catchers and we will mail out a few more tomorrow to our special donors!! She will be "out of commission" for the rest of the week because of her surgery, but I will gladly keep everyone posted, both on here and on her facebook page!! Thank you all once again for your sharing, your caring, your love and support, your prayers and happy thoughts! It truly does mean the world to us!!
I cannot begin to tell you how touched we are at the outpouring of support for Mickie that we have received this week since Mr. Cook's article appeared in the newspaper! We have made some new friends, received many prayers and happy thoughts and have raised enough money for the down payment for our seizure response dog! And touched?.....Well, that's an understatement! Emotional, amazed, grateful, etc.
We attempted to go to the bank to open a benefit account, but after being turned down by three different banks, saying "we don't do that here" and another bank saying I needed to apply for a Tax ID from the IRS, we've put that on hold for right now and just opened up a PO Box. We just have too much going on with her surgery and everything! But our new mailing address is PO Box 2121, Fort Oglethorpe, Georgia, 30742. If anyone has any suggestions in the meantime to help us out, PLEASE let us know!! I felt like I was getting the runaround!!
I'm getting more nervous as Tuesday approaches.....did we make the right decision? Will we regret it later on? It's a lifelong device that's going to be inside her chest and going to be shocking her every 3-5 minutes. It's so difficult to think about, and I'll probably always second guess myself.....until I see it working. When I see my baby girl waking up refreshed each morning and not exhausted from seizing during the night, or sleeping 20 hours each weekend just from 1 or 2 seizures completely wearing her out, I will know I made the right choice.
She didn't ask to get sick. She didn't ask to suddenly develop seizures with no warning and no cause for them. And she didn't ask to lose friends who she thought would always be there for her. But she is trying to get through it. She is realizing who her real friends are and those friends see her for the REAL MICKIE. One whose smile lights up a room, eyes twinkle like the stars above, laughter is contagious, and the mischievous look on her face makes you question what she's up to.
So, in conclusion, I can only say a heartfelt thank you to the generous donors who are now our friends. For you to give to someone you've never met, you are helping us reach an extremely important goal of our seizure response dog......a dog that can change her life and have a huge impact on her like you wouldn't believe. A dog that she needs to be her four-legged best friend. When she has a seizure, she won't be alone.
If you have any questions about Mickie or about our "quest", please feel free to ask! Also, please feel free to follow her pages, as we do post constant updates!
Wouldn't it be nice to have a great status that makes you just grin from ear to ear??? Yeah, that's not going to happen today! But just a thought!!
First, I'd like to thank everyone for making their generous donations to Mickie's seizure dog fund. We've collected over $1,000 over the past 36 hours and we have enough for our down payment. It is still a very long road and we have about $7,000 more to raise, but I cannot tell you how heartwarming it is to see all these comments of prayer and good thoughts!! It is so amazingly sweet!
Secondly, we had our consultation with the surgeon today, and Mickie has been scheduled for surgery. We hit a snag and my claws did have to come out, because I was told that her surgery would be completed before 6/30 due to the fact that our management company at work is trying to drop my insurance (and me), so I'm in limbo right now. So when I spoke with Cyberonics, the VNS group, they assured me that it wouldn't be a problem, they spoke with the surgeon's office and it's all taken care of. However, after we met with the surgeon (great doc, really like him), we sat down with the scheduler. She got an attitude and wanted to know "where I'd heard that from" because that just can't happen. I basically burned holes through her eyes because i was so livid! When I got back upstairs to work, I texted our rep and she said she was going to take care of it. It was taken care of at 5:00pm when I was walking out the door. They were all ready to get Mickie set up with a neurosurgeon down in Atlanta, but miraculously the surgeon's office here had an opening next Tuesday.....imagine that!! So Mickie will have her VNS implanted on 6/24 and she'll be out of commission for about 4-5 days. Yes, she will have scars, hopefully minimal, and the neurologist will turn the VNS on about 2-3 weeks after that, with the settings getting adjusted every 2 weeks until we hit the optimal setting. Hopefully this will help with her seizures because this is a lifetime commitment, but they can't make any guarantees, and that's understandable.
So right now, we're a wait and see. I just don't want anymore weekends like we had the past two weekends......we are probably going to take it easy this weekend, just to avoid her having any more seizures. She was pretty tired today at work, but she kept her head up and "did her job"!! ;-)
Will keep you all posted, of course!!! Have a wonderful week....sheesh, it's gonna be hot down here!
Now that it's summertime, we're trying to get out and do a bit more because it's just so beautiful to waste it inside!! However, these past two weekends, Mickie would end up having a seizure by Saturday night, and spend the majority of the day sleeping. Such as today. I took Mickie and Lona (one of Mickie's BFF's) to Chester Frost park yesterday morning to catch some rays and let them swim in the lake. They had so much fun! Came home, chilled for a few hours, then took them to the Peavine Rodeo in Ringgold.....hey, these are free and free works for us!! ;-) Anyways, we were there for about three hours, the sun went down, the fluorescent stadium lights came on, and she started getting a tad off balance. By 10:45pm, I suggested we go ahead and head on home. Within 10 minutes of getting in the car, Mickie was passed out cold.
Here it is, 3pm on Sunday and she's asleep again. I think she's been awake for a total of 2.5 hours since 11pm last night. The sad thing? We're getting used to it....she is also progressing in her seizures to the point where you can actually see her twitching. She is also starting to have the incontinence with the nighttime seizures. She's wet the bed once so far and it's hard to make her realize that as bad as it sounds, it is a normal reaction as her seizures progress.
We have our appointment with the surgeon tomorrow morning at 11am, so I'm taking her to work with me. I'm a little nervous, so I've made a list of questions to ask. Mickie's most worried about how her scars will look and if she can still go swimming lol. I'm more worried about the REAL things!! But she will be having the VNS implanted within the next two weeks. I'm sure it will have a positive impact eventually, it just takes time to get the settings adjusted. Patience is virtue!
Once again, thank you all so much for your generous contributions and sharing Mickie's story! And a special thanks to Mr. Cook for doing a story on her and helping us get the word out!
Mickie's article will be in this Sunday's edition of the Chattanooga Times Free Press. We had the pleasure of meeting with the journalist, Mr. Cook yesterday when he dropped by our house to meet Mickie. I'm sure we threw him for a loop with her past two years of "fun", but as with most people, you can just sit there and look at Mickie, and on a good day, she is full of energy, running around without a care in the world. It would make you wonder, "how is this kid sick? What could possibly be wrong with her?" Hopefully this article will get people to realize that you don't have to look sick to be sick. It's not been easy to raise money for her seizure response dog. We're preparing to sign the contract, and we'll find a way to save the money, somehow, because this dog will benefit Mickie in so many ways.
We will post a link to the story and if you all could share the link, that would be wonderful! Will keep you posted on how the surgeon's appointment goes on Monday!! Hopefully she'll have a good weekend and I can take her to the rodeo tomorrow night and back up to the "beach" on Saturday.
Thank you all so much for everything you've done, even if it's just praying, sending happy thoughts, donations, or sharing her pages. It means the world to us, you have no idea!! xoxoxo
It's not easy having to be a parent and make a decision that can impact your child's life forever. That's exactly what we had to do today, after much thought, research, consideration, conversations with Mickie and with the doctors and Cyberonics company. Mickie is just not responding to her seizure medications, and after the seizures she had this weekend that put her out for almost 24 hours, it's time to take the next step.
The VNS is a Vagus Nerve Stimulator. It is basically a pacemaker for her brain. The battery part will be implanted in her chest and the wire will run from the battery up into her neck and be coiled around her vagus nerve. It will be turned on and the settings will be adjusted by her neurologist, starting on the lowest settings and gradually building up to the working settings. The VNS will send "shock signals" every 3-5 minutes that last for about 30 seconds and when Mickie feels the need, she can swipe her magnet across her chest to hopefully "calm the seizure down". She will learn to wear the magnet along with her medical ID bracelet, and we will carry magnets as well. The Cyberonics company will come to her school and train her teachers and the nurse because at this point we're not sure if there are any other kids in the school that have a VNS.
This was not an easy decision to make. However, if this doesn't work, our next decision will be having to go to Vanderbilt to have "mapping" done of her brain and possible resection of the part where she's having the seizures. We've also discussed doing a PET scan to determine if there's anything that we're missing, such as an AVM that's causing these seizures. I would give anything in the world to take it away, but if we can get this VNS to get her to live her life again, I'll be thrilled!
She was very worried about school and friends. Of course, she's at that age in middle school, and she hasn't been treated fairly by the people she thought were her friends. So she's determined to make sure people know that she's different and that different is okay. She's nervous that people will see her scars on her neck and chest or they will see her swipe her chest and ask questions. I would hope that they would step up and accept her for who she is, because there's not going to be another Mickie in the world. She is without a doubt, one of a kind!
So we will keep you all posted, we are expected to have this surgery within the next three weeks, and hopefully it is a same-day procedure, which will put her out of commission for a week or so until the stitches heal up.
I appreciate all of your help and support during this time. It has not been easy by any means, so I thank you all for liking and sharing her pages to get her story out there! The VNS does not stop us from getting the seizure response dog, our timeline still puts us around December 2015. It's so hard raising the funds and I'm in the middle of dealing with BB&T to set up an actual fundraising account to use for the seizure dog funds. We are still trying to raise the down payment of $2,000 and we still have $1200 to go. I guess as they say, good things come to those who wait........
I absolutely love my daughter "to the moon and back" as the saying goes. No matter what galaxy, what planet, any moon.....she's at that age where she's voicing her opinion and we do our best to respect her wishes and let her be heard. Because let's be honest. She's had to do a lot of growing up over the past two years, against her will mostly, but she's handled it so maturely and I couldn't be more proud of her. She's lost a few friends along the way, people we thought would be there for her, who promised to be there, but just couldn't handle her being "different".
I'm crying as I write this, which will make the third time today. Yup, I cried while I was at work, because we had a representative from Cyberonics visit the office. It's come down to the fact that Mickie is metabolizing her medications too quickly and it's not giving her enough protection from her seizures, and her two newest ones have caused severe reactions that have caused quite a scare. She's had 11 known seizures in the month of May and already at least 2 this month that we know of. We're running out of options, so when the rep came today, her neurologist actually stopped what he was doing and talked with us in the hall. I think he knows that I'm really upset about the whole thing and very torn.
The time is approaching that we need to consider implanting a VNS in Mickie, known as a Vagus Nerve Stimulator. I've shown her the videos, she's watched a surgery of the implantation, but she's voiced that she doesn't want one. I'm thinking it's a social thing, she's afraid if people knew she had one, they would think she was "weird". Who wants to be around a kid who's swiping a magnet on her chest all the time? I'm trying to hard to respect Mickie's wishes, but I have to make her understand that this VNS implant will help her seizures and cut down on her post-ictal periods afterwards.
From a professional standpoint, I have a number of patients with a VNS, and I have some that have it working for them, and some that it hasn't changed at all. There are people that have been able to decrease their seizure medication and haven't had a seizure in a long time, and others still have to take the same amount of medication as before the implant. They are constantly getting their settings adjusted when the come for an office visit, have to carry a magnet at all times, etc.
From a parent standpoint, I'm so nervous. It's another surgery, and even though she's been through so many, she doesn't do well coming out of anesthesia, it's literally a pacemaker for her brain being inserted near her chest and having a wire being wrapped around a nerve in her neck. It's having to teach people how to use the magnet and trusting them to use it if they have to when we're not around. It's having comfort in trusting that Mickie will know what to do if she has a problem and needs to turn it off. It's the whole Mom nervous thing.
I honestly don't know what to do. So here's what we're going to do. Cyberonics will be bringing a doc with them to Mickie's appointment with them on Tuesday so we can have a "2nd opinion" and get as many questions answered as we want. Part of me wants to wait another six months, but I'm scared that her seizures will continue and cause irreparable damage. So it's going to take a lot of thinking.....She is already going to have another surgery in August, and it's so hard to decide what part of her body takes priority.
So that's it. Other than that, she's had a decent week. She did have a seizure during the night yesterday, causing her to fall out of bed (stubborn thing thinks she's too good for a bed rail now) and sleep until after 10am. I'm hoping to take her up to the lake this weekend and catch a little sun, so we'll see how it goes!
We'll keep you posted on her neuro appointment next week. This is going to be a very big appointment, because it's going to come with a very big decision. We also have our interview with the newspaper, which had to be rescheduled from yesterday, so we haven't forgotten about that!!
Thanks to you all for continuing to share Mickie's pages, I'm still trying to think of ways (and time) to set up fundraisers for Mickie to continue raising funds for the seizure dog. This dog is sure to change her life for the better and it's going to be an absolutely Godsend!
It really isn't easy trying to raise money for ANYTHING, let alone a seizure dog for Mickie's benefit. Yes, we've stalled with raising money--of course! The economy is awful, and there are people out there just like us; trying to pay bills and keep food on the table for their own families. We're not an organization--we are a family o three, struggling to make ends meet, and it's by no means easy. I don't see my husband during the week because of our work schedules, so we only see each other on the weekends (probably safer that way lol). Our time doesn't allow us to do a lot to raise money, especially at the drop of a hat. It's hard to focus on one thing while doing ten others. It's not easy for us to approach businesses to ask for donations for this seizure dog, because we've attempted that a few times, and each time was a rejection--why, you ask? Because businesses are NOT ALLOWED to donate to individuals, especially monetary donations. We are not a 501(c)(3) organization, nor to I have the time to apply to become one. So once again, I feel like we're stuck between a rock and a hard place.
The company that we're preparing to sign a contract with is called Sit Service Dogs out of Ava, Illinois. http://www.sitservicedogs.com/ They are very reputable, have been on the news, have answered all of my questions, and will be training a dog specifically to meet Mickie's needs. These dogs don't come cheap.....they never do, they never will and they shouldn't, because of the amount of training. Hopefully we will not have to go up there at all, since Mickie is a child, the dog and the trainer will be coming down to our "territory" to finish the training with them together, so I think it will work out nicely. Their waiting period is about 18-20 months. Raising the money is going to be the huge part of it though. If we get a tax return next year, Mickie knows it is all going to the dog, not to a birthday trip, or anything like that. Christmas will be slim this year because we've decided to put money towards the dog. So we have to sacrifice as much as possible.
Moving along, Mickie did have a great week. As far as we knew, she hadn't had a seizure since the 20th. However, on 5/30, it was time to increase her med to the next dosage, which was to be 3 pills 3 times a day. By the time I got home, she was tired, had been sleeping throughout the afternoon, which is usually a sign of side effects or she'd had a seizure. But today she slept until almost 1:00 in the afternoon! When she finally woke up, she was having double vision and was back to "hugging the walls" when she walked, which was a repeat of what happened a few weeks ago. She'd already taken her morning meds, so we're holding her two other doses until tomorrow to get it out of her system a little bit. As of tonight, she fell asleep around 10pm, spent the whole day on the couch, and was still having trouble walking. Given the fact that we took her to the ER the first time this happened a few weeks ago, no sense in going again just to have them tell us to stop the meds and wait. I can do that without paying the bill!!
Right now, we're back to the waiting game. She's such a true little fighter though, and I'm so proud of her for sticking it out! I'm temped to let her go back to martial arts in July, I know she misses it and there's no sense in keeping her out when it didn't help her seizures anyway. We have gone ahead and signed up to begin receiving paperwork for her VNS. I'm still not sold on the whole idea of it, but since medications don't seem to be doing the trick, we may not have another option.
We do have the Chattanooga Times Free Press interview this Wednesday evening. I had sent them a letter as I had with numerous other businesses. We are really hoping that once we can get her story shared with a big newspaper such as this one, people will realize that "hey, they're real people! They're not looking for money to spend, it's really going towards a seizure dog!" That's exactly how I think people feel right now, hence the hesitancy to donate. So cleaning the house this weekend is on the agenda!!
I think that's it for now, it's nice and quiet.....Mickie's on the couch sleeping (upside down of course); I'm chilling in the recliner trying to figure out what to do without going totally insane with this whole raising money thing!! I will never stop thanking you all for continuing to share her pages and her story! We finally hit over 300 likes on her Facebook page, which is big for us, so let's keep it up!! We also have an Instagram account, the ID is support4mickie. Thanks and have a terrific weekend!
First of all, I want to continue to thank you all for sharing Mickie's story on Facebook, email, Twitter, Pinterest, etc. We now have over 300 likes on Facebook and I hope we can continue to grow and make new friends!!
Wow, Mickie has surprisingly had a terrific week!! Absolutely no vomiting and no daytime seizures!! I'm so happy!! She bumps up to the next dosage of her med tomorrow, which is 3 pills three times a day, then next week she'll go to 4 pills three times a day. She'll follow up with neuro on the 10th to do a recheck and make sure she's doing okay.....
Her GI doctor is leaving at the end of the month, which is awful, because he is one of our absolute favorite doctors!! However, he's only moving about 2 hours away, and he's worth the drive! But, he'll be coming back to Chattanooga and keeping his privileges at the Children's Hospital, so he'll be doing Mickie's surgery in August. I can't imagine another ornery person doing my ornery child's surgery!! Hopefully the Flovent is doing the job in healing her esophagus so we can avoid having to stretch it every three months!!
She's been having fun, playing outside till almost 9pm at night, getting a good night's sleep, then waking up and starting all over again the next day! She's becoming very responsible with taking her meds three times a day, and I'm so very proud of her!!
Hopefully we can keep up this good streak! She returns to school at the beginning of August, so only two months of summer, then back to school as a 7th grader!! We will keep you posted from the newspaper interview and let you know when the article will be out! We are saving all of her newspaper articles so she can look back one day and realize what an amazing little girl she truly is!
Thank you all so much again, and if you know anyone in our area who is willing to set something out to collect donations or is willing to do a fundraiser, we have about 18 months to come up with $9,000 before she gets her seizure response dog, so hopefully we can do it!!!
New week, new update! First, we're lucky in meeting new people across the country (and yes, even the world, as we have friends "down under") and sharing Mickie's story, getting to know other kids with some of her illnesses. We're trying to contact businesses locally to arrange a fundraiser for Mickie's seizure dog....not much luck though.....not giving up yet!!
We have been contacted by the Chattanooga Times Free Press about doing an article on Mickie's story and our venture for a seizure response dog.....hopefully their pages are big enough! ha! But I hope with this exposure, it will be a slightly bigger breakthrough to more contacts that we can reach out to for fundraising! Sharing stories, making friends....yup, it's all good!
We also had a rep from Cyberonics visit our office this week (yes, I work in neurology, it's perfect for Mickie's seizures lol). Her neurologist and I had briefly discussed inserting a VNS implant if this seizure medicine doesn't work. A VNS is like a pacemaker for the brain. A battery would be inserted into her chest with a wire running up into the vagus nerve in her neck near the base of her brain. It's designed to prevent and hopefully stop the seizures by sending little signals up there, while we would also have magnets used to swipe over her battery in the event of a seizure. Given the fact that Mickie has already gone through four seizure medications in less than a year, currently on three medications, and still had 10+ seizures this month, we need to really hope that these meds work, because I'm very hesitant on doing this. I have a few patients with a VNS, and some it has made a huge difference, some it hasn't......it's a big decision, so I have a lot of research to do, and a lot of reading to do. If anything, it will be done at Emory in Atlanta by a neurosurgeon and a vascular surgeon, "tag-teaming" her during the surgery. Kind of cool.....nah......
Anyways, Mickie's last day of school was today! Missing 30 days, having to leave early 67 days, and she still managed to maintain honor roll in all of her classes!!! So proud of her!! I know it's been such a rough year for her, but her accomplishments and goals are always within reach! She's already talking about getting a job.....oh, wishful thinking!! lol
I think that's about it for now, we increase her dosage on her new seizure medicine today, side effects are minimal so far, but she's pushing through it as always!
Thank you all for sharing her story, I think we've picked our seizure dog organization and hope to sign the contract within the next few weeks!! Then it's just raising the money until the doggy is ready to come meet us!! ;-)
It's been a pretty rough week for Mickie so far. We were supposed to be sending her back to school on Thursday (today), however, she STILL is having a major problem with walking. She's fallen twice this week, hitting her head once on the kitchen cabinet, and struggles just to get from a sitting to a standing position. She is very unsure of herself and unsteady on her feet and still "traces" the wall when she walks. She also has a hard time "feeling" her legs from the knees down, which we really can't explain. She should have the Zonegran out of her system by now, so she needs just a little longer to recover hopefully.
She's supposed to start her new seizure medicine this weekend, Potiga, but I worry about the side effects. I always tell my patients not to Google, and not to read too much into the side effects.....and what do I do?? I read too much into the side effects!!! Considering the fact that Mickie had this much trouble on a simple medicine such as Zonegran, I can only pray that she doesn't have half as much trouble on this medicine.
Hopefully she'll make it for the last week of school next week! And to think, she's supposed to have volleyball tryouts at school next week. Yes, I am still considering letting her tryout, because #1, I think she'll be mostly better by then, #2, actual volleyball practice does NOT start until the fall. I made a choice as a parent. I will not let her stay down, she's always going to fight and continue to do so. It was either volleyball or softball and I'm more comfortable with a volleyball hitting her at 5mph than a softball hitting her at 50mph....get the picture? ;-)
Oh, we did hear from the manager of the hotel, they were notified of Mickie's "episode" while we were there and they have offered to let her have her 2nd night on them....they are also letting us have the same bunk bed suite that we had, which is wonderful! We are so grateful, because we want Mickie to have a memorable birthday trip for once!!!
That's about it for now, will keep you posted on how she's doing!!! Please continue to share her page and her story! She just loves being different!
Well, we took Mickie to Gatlinburg to the Wilderness WaterPark hotel for her birthday. When we arrived and went to pay our balance, they informed us that it had already been taken care of!! Considering the fact that not many people knew where we were taking her, we were so shocked at the amazingly wonderful gesture! It takes us a lot to save what money we can for her birthday money! So whoever you are, thank you!! So we got there on Friday early afternoon and had a GREAT day there! It's an amazing hotel and we had a blast, crashing by 10:30 that night! The next morning, Mickie woke up a little disoriented, so we knew then that she'd probably had a seizure the night before. We let her work it out, and we went to the arcade and gift shops and let her feel a little better. However by 1:30, we noticed that she was staggering when she walked and was "holding" the wall when she walked. Her words were a little slurred as well, so we didn't want her going into the pool anymore. She ended up sleeping at 3pm and did not wake up until 10:30 that night. As soon as she woke up, she began vomiting. She couldn't stand without help, she had to crawl instead of walk, and she was having double vision. At that point, there was no way we could stay there any longer. We didn't know about the hospitals in Knoxville, so we packed our stuff quickly, checked out, and sped home to Chattanooga, making it home by 2am. When we arrived at home, Mickie said she'd rather take a Meclizine than go to the ER, so we tried that option first. The side effects were "normal" for the new medicine she was on, but not to this extent. She slept longer again, and woke up around 10:45, no better. Off to the ER we went....and we got the same doc that treated her for the croup last month! He even remembered her! lol. Sure enough, she was very ataxic and couldn't even stand up to let them take her blood pressure. She was barely able to touch her finger to her nose or follow his finger with her eyes. You would seriously think she was on drugs, and I'm sure it scared her, because it scared the crap out of me! So he called her neurologist, and Mickie always stumps everyone, but he told her to stop the drugs, So we're off the new drug (Zonegran) and slowly working on the side effects getting out of her body. Sent her home to sleep again.
While I had a few minutes, I attempted to call the hotel to see if they could be compassionate enough to understand the situation that this was her birthday trip. You would think that a hotel with a major reputation would have sympathy for a child on her birthday trip that had to cut it short because she had to have seizures and go to the hospital....you know, give us the night that we missed out on, let her have her arcade card that we put money on just hours before......but they refuse to address our question, won't acknowledge us at all......so that's okay, I'll remember that. My kid's birthday trip got ruined because of something that she couldn't prevent. Okay, vented on that part......
So......from 2am yesterday when we got back home until 2pm today, she'd only been awake for maybe 6 hours during that entire time. I really got into it with my management company today (they handle hiring/firing, payroll, billing, etc). I got to work and told them that I needed to get an MA to come in and cover for me because of my kid and I had to go back home. Keep in mind, I've been with my doc for almost six years, and I RARELY ever call out. I mean, RARELY. But today, with the way she was acting for the past 2 days, I was putting my kid above my job. Well, wouldn't you know it, the guy at the company and I got into it because he "didn't care" what I wanted, they didn't have anyone they could send over because three people had already called out today. Well, the frustration took over and I politely told him that I was going to hang up on him before I said something rude. And I hung up on him. Vented again.
Mickie ended having to stay with me at work for a majority of the day. See, I have my loves...my family and my job. And my co-worker and I are like best friends, so if I take off, I feel extremely guilty because I feel like it puts more work on her. At the same time, I hate having Mickie here at work with me when she's sick, because she deserves to be in her own bed. While we had her at work, her neurologist (other boss) saw her and we decided to stop the Zonegran to get her side effects to stop. Hopefully once she's had the med out of her system for 3-4 days, the balance will get better, the vision problems will get better and the seizures.....well, they'll get worse again lol. But we will start a new med on Friday, called Potiga, very new off the FDA shelf, that she'll start out with 50mg three times a day, and work her way up to 200mg three times a day. This is the fourth seizure medication she's been on since she was diagnosed 11 months ago, so we're running out of medications specifically aimed at her kind of epilepsy.
Needless to say, the doc is frustrated, because she's a "problem patient". The downside is if that this new medication does not work, we will have to discuss a VNS, which is called a Vagus Nerve Stimulator, implanted into her chest, and the wire will run up her neck and into her brain sending pulses to help control the seizures. This is not something I want to do, because even though I have patients with a VNS, it can be frustrating watching them go through it, getting the settings right, swiping the magnet when she has a seizure, etc. It's a lot of take in.
So that's our life so far. We've raised almost $800 towards her seizure dog, and it's becoming important more now than ever for her to have this dog and we really need the funds to help get this dog! Please help us out by sharing her pages, you can even print a page with the information that allows the person to scan the code and access it with their phone!! If you have any questions, please let us know!! Thanks for keeping up with our "soap opera lives" and we'll keep you updated as to how Mickie is doing!
It gets very exhausting trying to find people to sponsor/donate to Mickie's seizure dog fund.....I typed up another two-page letter today and sent them out to another 30 businesses in the area....which makes 60 this week. It's a lot of paper, ink, stamps, envelopes, but a lot of hope at the same time.....all we can do is have hope!
Mickie has had a rough two days. She's had at least two seizures in the last two days, both of them at school. Today's was accompanied by a very heavy nosebleed that lasted almost 1/2 hour, and it's her first nosebleed in awhile. It left her very dizzy and spaced out, so we brought her home to rest. Meanwhile, she started her third seizure medication tonight....more money to spend! This medication has a few more side effects than I'd like, but we'll have to be a little more observant of her and hope that she adjusts well!
I debating on cancelling her birthday trip because so many things have happened this week, but unfortunately they were going to keep our deposit if we did, so I guess we'll be taking her to Gatlinburg this weekend. I don't want her to miss out though, because she really deserves a break after all she's been through.
I have decided to let her try out for the school volleyball team. It was either that or softball, and I'm not comfortable with a 60mph ball flying at her head, so we'll go with volleyball! She has her physical in the morning, hopefully she'll pass and be able to try out! Fingers crossed!! I'm not going to let her sit back and feel sorry for herself and let others feel sorry for her! She's going to get up and be strong every day!!
Hope everyone has a fantastic week, and fingers crossed she does a great job!!! Love my baby girl!
It is EXTREMELY difficult to raise money for a seizure dog on your own.....when you approach businesses, corporations, etc, the response you will get is "we do not donate to individuals, but good luck to you". It gets extremely discouraging! However, tonight when I got home from work, I found a little motivation, and sat down, typing up a beautiful letter, printing out 25 copies, along with 25 copies of this page's flyer. I picked 25 businesses in our area and mailed them off....praying and crossing my fingers, because the longer it takes to raise money, the longer it takes her to get a dog!
We've decided to use Mickie's savings account to put the fund money into, because #1, it only had .51 in it and we can build interest when we add more money to it (duh) and #2, this stupid page won't let me keep the money, it automatically transfers into the bank every two weeks, which I really don't like. But we're rolling with it and we'll see what happens!
Mickie has had a rough week, even with her birthday. She's missed 2 1/2 days of school this week, because of vomiting and doctor appointments, but hopefully she's starting to feel better now. We had a major setback yesterday when she went to the orthopedic to get her cast off her arm....yeah!!! NOOO!!! Apparently her fracture looks worse now when when it did before they put the cast on! I couldn't believe it!! So, he wants to recast it again, but Matt told him that she's going on a field trip at school on Monday that involves playing in water and we're taking her and her BFF to Gatlinburg next weekend and there's a pool at the hotel and it would just ruin everything.....so he was okay with us splinting her hand 24/7 with buddy taping it....but we need to get right back to him afterwards so he can recast it. Hopefully there won't have to be a surgery if we can't get it healed, because this is the same hand, same knuckle that she broke back in October as well.
So wish us luck, all of those letters are going to the businesses tomorrow, all we can do it pray for good results for a future seizure dog for a very deserving little girl!!
Please remember to continue sharing her story and her pages, and thank you to all of you that continue to do so, I cannot begin to tell you how much it touches my heart every time I see a share.....I cannot express my thanks enough to you!! xoxo
Made it home from Nashville.....I'd like to say we were able to stay and play, but today was just pure hectic!! I'd emailed the ENT yesterday to tell him that she's not getting much better and he emailed back telling me to bring her in this afternoon. And I forgot that the time we were leaving was the time that she was supposed to be getting her cast off!!! So she's going to be spending her birthday in her cast.....I feel bad, but hopefully we'll get it off within the next week. We've avoided surgery for now, he did put the camera up her nose and down her throat, which revealed a lot of mucus and irritation, so we're upping the steroids to 30mg a day (here comes the attitude) and upping the antibiotics for another three weeks. I think she's only been OFF the antibiotics for a week out of these last two montsh...It just hasn't been a good year for her!! But she still has the spur which he really wants to get removed, but we're trying to hold off until the summer time, if we can make it that long. Meanwhile, we're purely exhausted.
I've been talking to local organizations and restaurants about donating to Mickie's seizure dog fund, but I keep hearing the same story. Since we haven't chosen an organization yet and we are not a 501c organization, they cannot make monetary donations.....so we keep running into brick walls. And honestly, if it comes down to it, we'll cut back on a bill or two each month to put towards her dog, because we researched this for almost five months, sat in on webinars, attended meetings, and this is a great opportunity for her. I'm not going to give up on this. If I have to put us in debt again, I will make it happen for her, one way or the other.
I can't believe she's going to be 12 years old tomorrow!!!! Oh wow, exactly 24 hours from now, right to the minute, as I'm typing this!! We're not doing anything special tomorrow, but we did get her a Batman cake (at her request).....we are taking her and one of her BFF's up to Gatlinburg next weekend for hopefully a relaxing (cast-free) weekend. We try to save just enough money to do this for her birthday to make it special. Then we are broke till Christmas lol. But it's worth it to see the smile on her face!!!
Hopefully she'll get to feeling better soon, cause I know her throat hurts from all the drainage and coughing, we may have to put her back on the Singulair for awhile to see if that will help too. Meanwhile, I've got a full day of patients tomorrow, so I'm off to bed!! Night everyone, and thank you for continuing to share her pages, you all have been extremely helpful with getting her story out there!!!
I want to say thank you to everyone who generously donated to Mickie's seizure dog fund this week.....we have $500 donated towards her dog, and while we have a long way to go still, I am so grateful at the generosity and the sharing of her pages! I have a phone interview with two more dog organizations on Monday and I've sent out two more applications this weekend. We don't want to pick just one organization, so we're trying to go with the organization with a decent wait period, a reasonable cost, and a terrific reputation. Finding all three is not easy!
We've had a lazy weekend, both Mickie and I have been sick with sinus issues. She's gone through an entire box of tissues and is camping out on the couch with me, while I'm abusing the NyQuil (lol) and trying to steal a tissue from her every now and then!
I can't believe Mickie is going to be 12 in just three short days! Luckily she's getting her cast off on Tuesday afternoon, so she'll get to celebrate her birthday cast-free!!!
I hope everyone has a wonderful week and please continue to share Mickie's pages.
For those of you who have made $100 donations this week, Mickie will be sending your special thank-you gifts later this week. She can't paint with her cast on, so we'll have to wait until it comes off, but I promise they're coming!!! ;-)
Great news!!! I have received phone calls from two organizations today......Mickie's applications have been accepted for the seizure dog!!! Unfortunately I couldn't take the phone calls because I was seeing patients all day, but I will definitely call them tomorrow to set up the next phase of the process!! This is super-exciting!!!
I also had a heartfelt moment today....I have this patient who comes in every now and then, and he and his amazing wife bring donuts and spoil us each time they come in!!! Well, today, they were nice enough to ask how Mickie was doing, and I told them how she's had a rough couple of weeks, and told them about the seizure dog, etc. They said they would pray for her at her church, which I loved, and I went about to work......when these two went to leave, they handed me a check for $200 to put towards Mickie's seizure dog fund....I cannot begin to tell you how touched I was!!! It took a lot for me not to cry, but I gave them both a HUGE hug and told them how much that would help!!! I have some absolutely wonderful patients!!!
Mickie's doing okay, she went back to school today, but vomited four times, so Daddy picked her up and brought her to my work. She saw the neuro while she was there and we tweaked her medicine, since she's had at least 7 seizures over the past 30 days. She's still barking, but that's to be expected.......have a wonderful week!!!
Ended up spending a long time in the ER last night and new prescriptions that set me back over $100!!! I think Mickie freaked out the docs in the beginning, which happens often enough. By the time I got her to the ER, she could barely catch her breath and when she wasn't trying to breathe normally, she was barking like crazy. They wasted no time getting us back to a room and the nurses and docs were in there trying to get her breathing normally. Her oxygen was dropping and they were hearing stridor in her breathing, so they immediately started an IV and gave her 10mg of steroids through the IV while respiratory therapy came in and gave her an epinephrine treatment through a nebulizer. Her chest pains were pretty bad from the coughing, but calming her down was key at that point.
After her treatment they took her down to get x-rays of her neck and chest, to rule out any abscesses or unusual findings. However, when she stood up to get her x-rays, she became extremely pale and dizzy and almost passed out on them. So of course, then they start talking about admitting her........I am not too keen on that, so I start telling her to hurry up and breathe normally lol. She stayed pale during the entire stay and every time she would get up, the dizziness would return. But finally after almost five hours, they gave her a "parting gift" of IV steroids again and told her to get some rest over the next couple of days. After talking to her pediatrician and her GI, we've made the assumption that the vomiting of blood is not from her stomach, it's from her esophagus where it's so scarred and she's been coughing so much. I'm okay with that!! So here's her diagnoses:
We are now finally home, she is resting up on NyQuil, Meclizine, Flovent, and Albuterol Nebulizer solution every four hours for at least the next two days. Hopefully the croup will clear up because she has state testing at school next week!!!
And wouldn't you know, we had a repeat ER session today....We are once again home from the ER, keeping our fingers crossed that we can get through this!! She had repeat treatments again, same as in the ER last night, then she zonked out for a bit! They got her oxygen level up to 96%, not totally up to par, but a vast improvement. Now that we're back home, she's back to coughing, but we're trying to control it with some drugs.......I can only hope she's over this within the next couple of days, I know she's miserable, and her chest is hurting from coughing so much, but she's still a fighter!!!
I'm sincerely hoping she nips this croup in the bud, because it's been going on for a week now, and she has state testing at school next week!! She's still so pale and weak, and it's just absolutely miserable and heartbreaking to see her like this!!
Thank you all for the status shares for the prayers, the messages and the well-wishes. We cannot thank you all enough!!
Please remember to share this page as well as her other page, www.facebook.com/mickie1inamillion. We are really trying to raise money for her seizure response dog, and if anyone has any ideas on how to raise money for her, please let me know! I have mailed out three applications in the past five days, and hope to hear something soon!!
I can't believe my baby girl is going to be 12 years old in just three short weeks!! She has been through so much in her short life, but I cannot wait to see what her future holds! She has so many goals and dreams and I will make sure she gets every chance to achieve those!!!
Please remember to share Mickie's pages!! www.facebook.com/mickie1inamillion It has been rough week so far, Mickie has had three seizures in the last 24 hours and she's just exhausted. I picked her up from school today since I was between patients and apparently she'd fallen asleep a few times today. So I took her back to work with me and she fell asleep in the recliner for the next four hours. I talked to her neurologist and asked him to see her before he left for the day, and he went over to figure out what was going on. We just can't figure out why she's not keeping the medicine in her system, but we're wondering if the vomiting is coinciding with her seizures (she threw up four times today).
So he sent us straight downstairs to have her levels checked and will see her back on the 21st. Meanwhile, we're playing with her meds again, and he may have to put her on the liquid form to make sure it stays in her system. Her post ictal states are still lasting a while, so I've decided to keep her out of school tomorrow so she can get some extra rest. She's supposed to do her final test tomorrow night in martial arts, and I hope she'll do okay!
We've got an appointment on Friday morning with her dentist, because apparently she has a third set of teeth in her mouth (yup, she just has to be weird) and one of them is impacted, so we may need another surgery for that too.......not the best year so far! I thought it was supposed to get better!!!!!
Well, it's been an eventful day! We started at 4:30am this morning when Mickie decided to have a seizure, apparently causing her to trip over her pajama pants and fall, hitting her head on the side of the bed. Luckily I'm not sleeping so hard anymore since she's been having seizures during the night, so as soon as I heard the thud, I was there....yup, she cried.....kind of a cute, disoriented cry......didn't know what happened, but we did our usual. Tucked her back in bed, kissed her boo-boo and made sure she fell back asleep. She did....so much so that she slept through her alarm at 6:15. So I kept her home from school and she didn't wake up from that seizure until almost 11am. Matt brought her up to me at 1:30 and her cheeks were still rosy and she looked tired, but we had to go see the Infectious Disease doctor.........WHICH TURNED OUT TO BE A FREAKING WASTE OF TIME!!!! After 2 1/2 hours, I finally told her, "Look, it's obvious I'm wasting you time, she doesn't have anything that you can treat, so we may as well just part ways here". And we did.
The problem however is that her seizures are now slowing down. So now that her neurologist is back in town, I kind of bombarded him today when he came in. He didn't realize that her seizure drug levels are almost non-detectable, which means that she's not absorbing ANY of the seizure medications long enough to protect her from the seizures. And yes, she's really stumped him now. She's really good with taking her meds, bitches about the taste of it, but she takes them. So we've doubled her Lamictal and she's now taking 400mg twice a day, and her Vimpat was maxed out, because the highest dosage you can take is 200mg twice a day. However, he's increasing her up to 200mg three times a day, which is unheard of. We have to do something though because she has to start responding. Her state testing at school is coming up and this could prove to be fatal to her test scores if she's still seizing.
We're questioning now whether the vomiting is being caused by her seizures. She may become nauseous after a seizure and throw up, because it just hits at random times and her seizures look like staring spells, so not many people can tell when she's having one. Next step is to go back to the GI and find our next options.
It's been extremely stressful because we had made plans to take our tax return and pay off all of her medical bills from 2013. And we did that!!! Sure enough, as soon as we had our balance down to maybe $400, within the past four weeks $5,700 in her medical bills came pouring into our house....and tears were pouring from my eyes!!! We will never get caught up with anything and it's beyond frustrating!!!! I hate feeling so helpless!! :(
So that's our Tuesday!!! Fun, huh???? Mind you, we're still going strong! My baby has a long line of fighters and she's not going to let ANYTHING knock her down!!!! Hope everyone is having a great week!!!
Please remember to share her page and bring awareness to family and friends!! We could be helping other children with problems like Mickie and they can get help sooner rather than later!!!! We have raised over $1,000 in support so far in just over four months and I cannot even begin to tell you how much that has helped. Even what people call "little things" like Wal-Mart gift cards, have gone a long way for things like groceries and gas for trips to Vanderbilt and it means ever-so much to us!! We took our entire tax return check and paid off almost all of Mickie's medical bills. We thought we had done an amazing job and we were quite proud of ourselves....until we started getting the bills from her surgery in January...then we got a bill from one of her genetics tests that insurance didn't cover......and wow.....not good. So needless to day, I feel like each time I think we're getting back on track, those tracks get ripped out from under us.....
Anyways, moving along, I'm posting the update of today's doctor visit (this was the neurologist). Was not good news....lately, when is it good anymore..... :-(
Well......didn't get the news I expected to hear today, but I got some more answers, which is leading us back to yet another doctor that I didn't think we'd have to see again. We met with Mickie's neurologist today and he reviewed her EEG from 2 weeks ago. She is still "mis-firing" and having seizures and still putting her at a Grade III, which is pretty severe. However, he said hers are weird because her seizures start out small in the frontal lobe (forehead) and then BAM! they spread to her whole head. Her post-ictal states are lasting longer, hence the long sleeping times she had after the EEG for over three days. Her headaches are getting more frequent and more severe, and apparently those could be from the seizures. So we are increasing her Lamictal to 200mg in the morning and 400mg at night. She's already maxed out on Vimpat and we are really trying to avoid another medication.
Next topic.......her blood.......apparently we've been keeping an eye on her platelets and they have been rising, now a little too much. So now she has what's called thrombocytosis. So he wants her to be seen by the hematologist to see if she needs to go on an anti-platelet medication and make sure there's not a more serious cause for the steady rise in her platelets.
Last topic.....yeah, we killed time there........over the next week or so, she's going to be evaluated for something called Mitochondrial Disease. This will involve muscle biopsies from her thigh and heart tests. I'd like to avoid this, so before I agree to this, I will be having a very long discussion with the geneticist. Sure, I'd love to know why she suddenly started having seizures, but if I can't find that out, then we'll focus on controlling them.
So it was a productive visit. It's been a year since she started having the seizures and he can't give a time frame on when they will go into grand mal seizures. We are hoping to keep them off for as long as they can, but he doesn't have high hopes if the meds she's on doesn't even control the focal seizures. If worse comes to worse, she will end up needing a VNS implanted into her chest/neck.
It has really been a rough couple of days. Because of the snow (the really unusual snow here in the south), we had to reschedule Mickie's EEG to yesterday morning....which means Mick could have NO MORE than 4-5 hours of sleep the night before the test. So we had to plan accordingly and get creative. It was only 24 degrees outside, so we bundled up with 2 pairs of pants, 2 shirts, our coats and gloves. At 11:00pm, we decided to go to the park to keep ourselves awake. I never knew how quiet and FUN it could be on a school night! Mickie and I had fun racing down the slide and seeing how high we could go on the swings! Then we played tennis for awhile until we couldn't feel our fingers!!
We then hit Wal-Mart for over an hour to shop and socialize. It really is better to shop at midnight! ;-) We finally made it home around 1:15am and Mickie was allowed to drift off to sleep at 2:30am. I ended up only getting about 90 minutes of sleep, but I function better on less sleep than more. We were up again and out the door by 7:30. By 8:15, Mickie was on the table getting electrodes placed on her head.
The test took over two hours and she had at least two seizures during the test, and left extremely exhausted. I had to run to work to get some phone calls returned to patients and some charts filed, so my co-workers at the infusion center let her chill in one of the recliners....she was out like a light in less than 10 minutes. She slept until 1:00 and we were supposed to go to the orthodontist, but when we talked to them, we weren't really comfortable with her going there in her state, so we rescheduled.
Headed over to get her new social security card with her new name, and sure enough she fell asleep on my shoulder. Then she fell asleep on the way home.....and when we got home......We're pretty sure she ended up having another seizure last night, but she woke up this morning and got ready for school....however, she just didn't act like herself, but against my better judgment, I sent her on her way. So, with three seizures in less than 24 hours, I knew something was going to happen and I emailed her social studies teacher and advised her that if she takes her make up test, she may not have good results......sure enough, SHE FAILED THE TEST!! She blanked out on every single thing we studied for on Tuesday, and didn't remember anything, and tried so hard. Luckily they are going to let her make it up next week. So I sent Daddy to pick her up from school at noon and she came back home and slept......I'd say in the past 36 hours, she's had about 26 hours of sleep....poor thing.....
We will hopefully have the EEG read next week to see if there's anything else we can do. I'm hoping her seizures are not as severe as they were last year though!
Her progress report was great! All A's and only one B, so I'm super uber proud of her! She's really stepped up and worked very hard to keep her grades up! She's also working towards her martial arts tournament on 3/8 here in Chattanooga, and she hasn't done one in a year now. Depending on how she's feeling, we'll determine if it's okay to spar (in tournaments, you get strikes if you hit your opponent in the head). We are trying to show her that she can't let anything keep her down, no matter what. She really is my little true inspiration and even though I'm only 3 inches taller than her, I'm looking up to her every single day!!!
We have good news and not-so-good news. We've been gone since 8:30am and we just got back home after a long day of driving to Vanderbilt in Nashville for doctor visits and driving home. Our first visit was with the ENT and he was impressed with how well her nosebleeds have improved since starting the Timolol nose spray. He'd never heard of that being used as a nose spray since it's primarily used as eye drops/ointment. So he intends on using it for his other patients, which is great! However, he is realistic, as are we, and he did say that she will need another surgery in the next 6-12 months. She does have 2 spurs in her nose that will cause problems so he'd rather get rid of those and do a septoplasty at the same time. So we will go back in August (earlier if needed) and plan the surgery in the fall. It's just too hectic right now.
We had about 2 hours to kill until our next appointment, so we headed over to the Opry Mills Mall to our tradition of lunch at the Rainforest Cafe. We had a great time and finished our collection of plates for all of the characters!! Mickie tried to talk me into a Build-a-Bear, but finances just didn't allow that today!
Our next appointment was a genetics. We did learn that she did test negative for HHT, however he said that all of the genes have not been "accounted for" and she may very well fall in that percentile, so he still doesn't rule HHT out, especially with all of her symptoms matching up with the disease. Kind of a toss up, didn't really get a full answer, but I'll settle for it. In the meantime, he's going to rack his brain and have a meeting with the genetics counselor because we'd like to find out what brought on her seizures so quickly. As far as we know, she's only been having them for just under a year. She's only had 4-5 concussions, the last one being almost 5 years ago. There's no reason for her to have seizures, so he said there is a genetic epilepsy panel to help them better understand what's going on. He and I will resume our conversation via email in a few weeks and take it from there.
In the meantime, she's been off many of her medications for almost a month now and she's really doing amazing. She's only vomited once, which is a huge change compared to 4-5 times per week. She's only on her allergy med, her 2 seizure meds and her nose spray. Our next step is allergy skin testing on Thursday, which I hope comes up negative. Never know!
That's it, we're home and we're exhausted!! Back to work for me and back to school for her tomorrow. Her follow up EEG is scheduled for next month and hopefully it will show if the medications are working or not. Thank you all for continuing your words of support and encouragement. The messages, calls, texts, cards, etc mean so much...
A special thank you to our SCES family. You will never know how grateful we are and how much this means to us (or how much you made me cry last night while I was driving home!). Thank you all and you will always be a part of our family!!!
It's been a busy month, and it's going to be a busy couple of weeks, especially with this lovely weather we've been having!!! Can't say it's not an exciting year already!!!
It's been two weeks since I stopped most of Mickie's medications. Yes, I did this without consulting a doctor, because as her mother and being in the medical field for a better part of 20 years, I know which medicines can be stopped and which ones are crucial to her. She has remained on her two seizure medications, and she hasn't had a seizure (that we know of) in about a week, which is good. She has only thrown up one time, which is MUCH better than 4-5 times + per week. She really is doing well for the most part! Nosebleeds are becoming few and far between now, which is great too, so the Timolol is definitely doing a great job!
We paid a visit to the GI today (one of Mickie's favorite doctors). We're stuck between a rock and a hard place because he's hesitant to add an inhaler to her daily regimen, because we would have to do it for two years. The inhaler would not be for her lungs, she would literally need to breathe it in and swallow the medicine so it coats her esophagus. Right now we're going to wait until she has her allergy skin testing next week and go from there. However, he would like to put her back on her Prevacid to help with protecting the esophagus from her reflux, which I'm okay with adding it back. The unfortunate thing is that he didn't realize that when she'd had an endoscopy at Vanderbilt last year, her esophagus looked NOTHING like it does now, so he's really bumfuzzled why it could change so quickly and what's happened to make it change. So we're at the wait and see. But he is going to scope her again in about 4 months after we make some changes to see if it has improved or worsened.
Then we went to 9 different stores and FINALLY FOUND A SLED!!! LOL, had to throw that in there!
Thursday is her repeat EEG. Depending on the weather, we may have to postpone it until next week, but right now, she and I get to stay up ALL NIGHT tomorrow night because she can only have 4-5 hours of sleep, so we're both going to be exhausted. Then she has her first appointment with the orthodontist on Thurs morning at 9:30, then her EEG at noon, and hopefully she can go home and go to bed after that!!
Next week is busy as well. We have her two doctor's appointments at Vanderbilt, one with ENT and one with Genetics. The good thing is that she'll get to go to Rainforest Cafe for lunch, which she loves!! I don't anticipate much happening there, since she hasn't been doing too bad.
I guess that's it!! Bittersweet. We filed our tax return and used ALL of the return to pay off her medical bills. I wish we hadn't because I kind of wanted some to play with and use for her birthday, but we have to put priorities in place. However, I did learn something.....when you let your bills roll over into collections, which pretty much ALL of hers had, they will actually settle with you!!! For example, she had a $1,440 bill from Vanderbilt from her surgery last February. Yeah, I know, we just don't have that kind of money. Anyways, I called them up and told them if they could lower it, I would pay it over the phone. And sure enough, they took almost $500 off the bill!! I did that with two other bills and got them knocked down from $300 to $160! No, going to collections is not my cup of tea, but we don't have a choice. It works. So now we're starting over because her bills are rolling in from her endoscopy she had last month. I guess we'll figure it out as we go, or use our tax returns next year!!! The worst part is that our student loans are going to have to be repaid starting in April and that is really going to hurt us BIG TIME. We'll figure something out!!
Mickie also has her awards ceremony for martial arts on Thursday night (weather permitting). If she passes, she'll officially be a 2nd degree, Level 1 Black Belt. I'm so very proud of her!! She wanted to do volleyball next fall at her school, but unfortunately she missed the tryouts. I feel bad for her because that could've been a good sport for her....oh well, I guess we'll try again next year .
That's my rant and rave!! Everyone who's dealing with this winter weather, PLEASE be careful out there over the next few days!!! Thanks for continuing to share her story and like us!! It's never boring around here!!!!
Mickie has been off almost all of her meds for about a week now and she's had a cold since Tuesday. No fever, which is good, but she just feels "blah". That lovely stuffed up nose, you try to blow it, but nothing comes out...that kinda stuff......I don't think it has to do with taking her off meds, I think it's just this weather!!
Yes, I did make an executive decision to remove the medicine from Mickie's regimen. No, I didn't consult her doctors before doing this, because 1) she has 10 doctors...I'm not calling each one to get permission 2) I have enough medical experience to know which ones are safe to "mess with" and which ones aren't. For example, I don't mess with her seizure medicine, except to take a pill away for a day or two if she's too tired.
I am also the kind of parent that will sit there and watch my child for 24 hours to make sure there are no side effects from adding a medicine or taking a medicine away. I see everything, I know everything. If I didn't, she wouldn't have 10 doctors working with us to find out what's going on and working to fix her to make her perfect again. I'm lucky to work with her neurologist, who asks about her on a weekly basis and makes suggestions as to what we can do to prevent more seizures or to prevent her from falling asleep in class, etc.
Do I recommend this to other parents? Not in the least! But this is something I feel is an option for us as we are seeing six doctors in February and we will be able to offer each of them feedback from this "medicine freeze" and we'll be able to determine the next step. Do I like her walking around with a stuffy nose and rosy cheeks? No, but a boatload of kids are in the winter! But she hasn't thrown up in almost a week! I have to look at the positive point of view. I don't care about the money part. It's not about saving money on prescriptions. It's about the fact that if all of her food testing came back negative, then something chemical has destroyed her esophagus, so the next thought would be medicine.
So yes, this is my experiment. The most important medicines are still on board and that's my biggest concern. We'll draw her labs in about two weeks to make sure she's not deficient in any of her vitamins and her drug levels are in range. If not, we adjust accordingly and add what we need to. She also has her EEG this month and trip back to Vanderbilt to visit with ENT and Genetics. We also have skin testing for the food allergies since the blood testing really isn't conclusive half the time (I guess that was a waste of money), and another trip to GI.
I guess that's it. She's going to test for her Level 2, First Degree Black belt on February 7th, so wish us luck that she stays healthy for that!! Her instructors are great and let her test early because she's able to test at our local facility with people she knows where they are aware not to kick her above the neck, so we're happy with that. Will keep you all posted on how she's doing! Hopefully by Monday when she goes to school, the cold bug will have flown away!!
It's hard to keep looking up when you constantly get knocked on your butt......as is what happened today.....I took Mickie to work with me because she had her allergist at 10am....however, my boss's partner (her neurologist) decided to see her today as well since she was having problems with waking up at night and falling asleep in class, plus her seizures have increased. We're thinking she could be having seizures at night, which is causing her to wake up, meaning she's not getting enough sleep....hence being so tired during the day. So once again we're tweaking her meds, and she's maxed out on the 2nd medication. He's also going to repeat her EEG to see if her seizures have calmed down since last year.
Next we headed to the allergist at the request of her GI doc. Her regular allergist was on vacation, so we had to settle for the PA. I wasn't too happy because it's no easy explaining her medical history to someone new. Her RAST allergy test for foods have come back negative (that was done by blood), so we're setting her up for skin testing in a couple of weeks. Meanwhile, they gave her a nebulizer treatment there and realized that her breathing is doing quite well despite the esophagitis, so we're going to monitor her. I honestly felt like we got no answers at the allergist at all.
I'm almost at a loss. This has been going on for 11 months now, just about the time that she started all of these medications.....so I've decided to put her medications on hold with the exception of one allergy medicine, her two seizure medicines, and her Timolol to prevent her nosebleeds. If she does better after a month with no meds, then we know there was a problem and we slowly start adding them back one at a time to determine which medicine caused the problem. She also has a problem with her platelets bouncing around as well, so we have to monitor those.
It's just a never-ending struggle. On top of that, I head to the pharmacy with her prescription after work, along with one of those beautiful co-pay cards from the drug manufacturer. It turns out that they wouldn't honor it because this medication is not intended for someone her age. Well, I can't afford the $75 co-pay right now, so I had to leave the store without her med. Not a good thing.....I'll figure something out eventually, but it gets extremely discouraging........
And go figure, ALL OF THIS HAPPENED JUST TODAY!!!!!!
It's been a long and trying day....we've found answers, however we are still bouncing from doctor to doctor. Mickie had her surgery this morning, and we were at the hospital at 7:30am. They ran behind and didn't get to take her back until 11am, but she occupied her time playing with my webcam on the laptop and became very "lovingly medicated".
The procedure was supposed to take an hour, however, it did not go as expected. He was unable to do the colonoscopy because he encountered some problems and said it was too risky to continue because she would have bled out if anything was "nicked". So he just the the endoscopy part and found a big part of the problem, primarily in her esophagus. A normal esophagus is nice and smooth, but hers was very inflamed with many ridges. He's given her the diagnosis of eosinophilic esophagitis and believes it may be coming from a food allergy, so he wants her to see her allergist right away to get tested. He's already started RAST testing on her and he took eight biopsies to some "trouble areas". She tolerated the procedure fairly well, but had to be given some zofran afterwards for the nausea.
So six hours later we are at home, she's still under a little bit of anesthesia and we love her little phrases that just randomly come out!! For example, she shouts out "No Nuts, No Glory!"......gotta love her! And yes, I'm a bad mommy, I take video of her when she's medicated because she does the craziest things!!!
Will keep you posted, maybe it is something as simple as a food allergy....but he still needs to do the colonoscopy, so that will be rescheduled....I'm sure she's, um, thrilled.
www.facebook.com/mickie1inamillion We are approaching "Surgery Day" on Friday, and we're getting a little nervous....yup, WE. It's been a rough couple of weeks, because Mickie had two nosebleeds/seizures last week, so I had a chat with her neurologist yesterday, and because she's been so tired and falling asleep in class, he wants her evaluated for narcolepsy. The less sleep she has, the more seizures she's prone to have, so that doesn't help. Plus, she's also been vomiting more. We've been through at least 4 different meds for reflux and they're not helping. She ended up coming home today for vomiting, and ended up sleeping for seven hours.
So starting tomorrow, she starts her clear liquid diet and her "clean out". It's going to be tough, because I have to monitor her from work, so I have to trust that she's not going to eat solid food, which I think she'll do okay since she doesn't feel well anyway. Then midnight she's NPO until after the surgery. They're doing an EGD (esophageogastroduodenoscopy) and a colonoscopy. Not the funnest things in the world, but we do need to find out what's going on.
I will keep everyone posted on how it goes, she has a difficult time coming out of anesthesia and this is the first surgery since her diagnosis, so it will come down to strapping her down so she doesn't seize on the table and using a special filter in her IV to prevent bubbles going into her body, etc. Fingers crossed, happy thoughts, good prayers!!!
We look forward to your continued support, both financial and emotional....you all have no idea how much this has helped us over the past few months! It has been a severe struggle with her being on 19 medicines a day and at least 4 of the co-pays are $75 a month. It becomes frustrating because we can't stop these medicines without severe repercussions. So thank you all for everything!!!
Make sure you like and share Mickie's page, www.facebook.com/mickie1inamillion !!! We've had a rocky start to the new year already, ranging from losing heat in the house during the coldest time in 20 years, to Mickie having a nosebleed/seizure on her first day back to school from winter break. She did great though, she always bounces back and I'm so proud of her! Her HIDA scan did come back negative, meaning that her gallbladder is functioning just fine (good news); but that means we still don't know why she's choosing to spontaneously vomit (bad news). So her GI has decided to do surgery on her next Friday to scope her and see what he can find inside. We really need the prayers and happy thoughts!!
As bad as this is, we haven't started Mickie's new medicine for her nosebleeds yet because we just can't get the money for it. Unfortunately because it's a compounded medication, and not some simple pill, it does not get submitted to insurance, so we have to pay out of pocket each month. It's a major struggle for us to pay for this, especially when there's no guarantee it will work. But we are hoping to get it together to pay in the next two weeks for it.
I guess that's about it! She is trying to go to martial arts often, as she's supposed to be testing in one month for her Level 2, First Degree black belt, so hopefully she won't have to skip testing for a second time in a row!! Please make sure you like and share her story/pages with family and friends! We have enjoyed making new friends through this experience!!
www.facebook.com/mickie1inamillion Don't forget to like and share!! It's been a busy week since Christmas, so we figured we'd give one big update. Mickie didn't get really sick for the first time during the holiday in quite awhile! Very proud! (yes, it's a big accomplishment) We had a trip to ortho to check on her hand the day after Christmas, and while it's been slow to heal, she's doing well, so he's given her special equipment and exercises to work on at home for awhile.
Next came our BIG trip to Augusta, Georgia. There are only 15 HHT clinics in the United States, and luckily one was only about 5 hours away from us. So we were able to get in within about 2 weeks, and we left on the 29th. Mickie's testing began at 9am on the 30th and ended around 1pm. She had an echocardiogram, a chest x-ray, a chest ct scan and pulmonary function tests. Needless to say, we were all exhausted! We met with the good doctor at 2pm and we went over all of the results. While the genetics testing has not come in yet, he cannot rule out the fact that she has HHT. She is still too young to definitively diagnose, but during the echocardiogram, we did find out that she had a hole in her heart that was supposed to close up at birth, but it had not. She does have some microscopic AVMs on her lungs, but since they're so small, we don't need to worry about them at this time.
We've decided to hold off on the actual chemo at this time and try a special compounded medication called Timolol. Some people may have heard of it, it's an eye ointment, but it is now being used as a nasal spray in HHT patients to control the nosebleeds. In addition, she will also use the Amicar (that's the chemo-like drug) as needed if her nosebleeds are really bad. We discussed laser cautery to be done in Augusta, but I'd like to hold off on more invasive procedures.
So, we headed back home and the very next morning, Mickie spent over two hours in the imaging center getting a HIDA scan because she's been having nausea and vomiting for a few months and we still don't know why. If that is negative, then her GI will most likely be doing a scope to do some further investigating to find out what's going on.
I think that's it for now! She's had two weeks off of school to rest, she's come to work with Mommy and helped out a lot, and I think she's had enough of a break (and Mommy and Daddy need a break)!! Please remember to like her facebook page, www.facebook.com/mickie1inamillion and share with your family and friends. Thank you so much for allowing us to share her story with you!!! Many blessings to you all!!
We had a wonderful Christmas, as this was the first time in over five years that NO ONE was sick through the holiday!! I could not thank enough people for sending Christmas cards and little gift cards for Mickie! We even had a couple "Secret Santas" who dropped off presents for Mickie! Her eyes lit up, my eyes teared up! We are ever so grateful with the support that we've received over the past few months.
It doesn't take long to pour over the bills during the holidays and wonder where the money is going to come from. Yes, we still have a long ways to go. Yes, we go for the generic instead of the brand. Yes, I'll buy her second-hand clothes off ebay instead of new clothes. But her medicines are so expensive. Hotels are expensive when we're travelling, as is the gas for the cars! We try to cut down wherever we can...sometimes it works, some times it doesn't.
Our next step is heading down to Augusta, Georgia for her next appointment with the HHT treatment center. There are only 15 centers in the United States, and luckily we're about 5 hours away from one. Starting at 8am Monday morning, she'll go through Pulmonary Function Tests, Echocardiograms with bubble studies, CT's of her chest and abdomen, and then meet with the doctor after everything's over. WHEW! I'm worn out just preparing for it!! Once we get home, she has a HIDA scan at 8am on Tuesday morning. If that's negative, our next step is doing an endoscopy to find the source of the vomiting.
It's been a rough week for Mickie so far. She started her Aminocaproic acid on Saturday, but wound up staying at home from school on Monday because of the side effects. She also ended up coming home at noon because she couldn't "keep her lunch down". It's been a week and we are STILL WAITING for confirmation of her MRI results. I don't want to rush it because part of me really doesn't want to know. We took her to the GI on Tuesday to find out why she's still having nausea and vomiting, so we decided to switch up her reflux meds and he's ordered a HIDA scan on her. If that comes back negative, he's going to scope her to hopefully see if there's anything in there that could be the culprit. Meanwhile, I have the lovely task of filling out her paperwork for the new doctor (our 10th doctor, adding to the growing list) on the 30th. She has a full day of testing down in Augusta, GA before she sees the doctor the same day. This doc is supposedly very well known, so to get in this quick is wonderful!
I think that's it, I can only hope and pray that she makes it through the holidays without being sick! Luckily our new bedrail (that was lovingly donated, thank you Shannon and Shea) has kept her from falling out of the bed during her nighttime seizures.
Okay, sooooo......we don't have it confirmed yet, but luckily I have connections and I let my boss look at the images of her MRI on the computer today. He used to be an ENT before he became a neurologist, so I have full faith and trust in him. If he saw pediatrics, he'd be Mickie's doctor in a heart beat. Anyways, he peeked at the MRI and the first thing he said was that she has more blood vessels than normal in a certain spot in her brain. When he was looking further, there was a spot in the middle of her brain where a blood vessel was, and he said it could potentially be an AVM.....something that is not supposed to be there, but it would be with her HHT diagnosis, as that is one of the symptoms. So now I have the disc to carry around in my purse and we're waiting for her neurologist (my boss's partner) to look at it. We will also take it to the HHT center in Augusta, Georgia to let the doctor there look at it. Only thing I can hope for is lots of prayers and lots of crossed fingers and happy thoughts! Meanwhile, we're going to take it with a grain of salt and keep going, because that's what we've taught her and we're going to practice what we preach! All I can ask is that you continue to share Mickie's page often so other people can be aware of her story and potentially catch this rare disorder in a family member/friend. www.facebook.com/mickie1inamillion
I cannot thank you enough for everyone liking and sharing our page(s) often! We encourage everyone to continue to share her page and offer support! We love it! Mickie is hanging in there, we're having a few more good days than bad, and no day time seizures (we're pretty sure she's having seizures while she's sleeping though, working on that). We got her Christmas pictures done and she's working on her list for Santa!
Greetings everyone! I'm sure everyone is preparing for the next big holiday, Christmas!!! Our tree is up, ornaments are hanging, candy canes have been put up (then taken down and eaten lol) and we're hoping to have a great day! Mickie usually gets sick over the holidays, so we're hoping this will be a good year!
She ended up staying home from school this Tuesday because she woke up in the middle of the night screaming from ear pain. Turns out she had an external ear infection and a little bit of sinusitis. So we're on antibiotics and numbing ear drops. She's dealing with headaches now too (hopefully sinus). The good news is no daytime seizures in almost a month!! We're so happy, and the nosebleeds have definitely slowed down too! We're still working with her hematologist/oncologist to determine if we're going to proceed with the Avastin chemo or we're going to try an alternate route. Decisions, decisions.
Mickie's doing well otherwise, she has her days where she just doesn't feel well and we'll head to bed early, but yesterday she managed to go to martial arts for the first time in over a month, so we were happy. Unfortunately, she won't be able to test for her next level of belt, so we'll have to wait until February.
We are loving it here in our new smaller house! I think it's so much easier here and the whole family is happy, including the animals!
Next step is Mickie's MRI/MRA of her brain on 12/12, where they will be looking for AVMs (arterio-venous malformations) and aneurysms in her brain. Hopefully everything comes back clear and we can breathe a sigh of relief! Then we have the GI doctor on 12/17, where he'll probably set her up for a scope of her stomach so we can look for causes of her nausea/vomiting and check for AVMs in her stomach as well. Fingers crossed, lots of prayers!
I think that's it! We'll post more once we get the results of her tests, but I encourage everyone to please continue to share Mickie's story, as her confidence level has come so far since we first began this page. She's now okay with talking about it, because we realize there are kids like her, and maybe she can help others. ;-) Have a wonderful week, and lots of love to our supporters!!
I hope everyone had a wonderful Thanksgiving with family and friends!! We had a great day here! Mickie has been doing fairly well, no nosebleeds, no seizures (that we know of) and just some nausea. It seems that when she's calmer she does much better, so I'm sure that will change when we go back to school next week.
We wanted to get some shopping done, but due to our obvious financial situation, this was the first year we weren't able to go out AT ALL.....Normally each year, we'll go to K-Mart and Big Lots while the turkey is cooking and buy a few things....not this time! My car has been "on the fritz" for about a week now, and it totally sucks having to rely on my co-worker/friend to take me to/from work. Not cool. Hopefully we'll get it fixed this weekend, but right now, chances are slim! I'm determined to try to take whatever money we have left over at the end of the month (yeah, wishful thinking lol) and put it into savings.....I really wanted Mickie to have a good Christmas, but she knows that it's been a rough year and we're trying hard....her health comes before toys though, and she understands that. So, instead of shopping today, like a lot of people are, Mickie and I spent the morning making three kinds of cookies! We had a great time, and over 100 cookies to show for it!! I love these moments!
One of the main reasons I wanted to write the update is that I have an app on my phone that I've been using for about four months now and I absolutely love it! It's great for parents/friends of people with seizures/epilepsy. It has a special diary for you to keep track of the episodes, including symptoms, triggers, times, and any action taken. The app is called "Young Epilepsy" and I highly recommend it!
Our next venture is to Portrait Innovations this weekend....love their packages, as we can get 50+ pictures for only $14.99, no extra fees!! So, since times are tight, I bought Mickie's sweater on ebay for only $1.29, and a simple pair of white jeans and white shoes....then I decorated them myself....she's going to look even more beautiful!!
I wish everyone a happy holiday and hope that you take this moment to cherish everything you have! Mickie is our most cherished possession and we'll do whatever it takes to keep her happy and healthy!!
Not much to report, Mickie made it two full days at school last week, and left early three days. Can't say she didn't try! She's been getting sick a little more often recently, but since she's been on break she's been doing okay. Not sure if she had an episode this morning or not, but all of a sudden she just fell asleep with her head on the table for almost an hour! I guess we'll just chalk it up to sleepy-headedness. Want to wish everyone a very Happy Thanksgiving and be safe!!
Mickie made it a whole day at school today! First time in awhile!!! She got sick this morning, but I was such a bad mommy, I made her go anyway!!! She's pretty much caught up on all of her make up work, and I met with her teachers this afternoon to discuss her 504 amendments. We've decided to remove her temporarily from the gifted classes so she has "less homework" and pressure put on her. Given the fact that she's going to miss time from her angiogram (if I let her have it done, still debating the risks), and her abdominal surgery next month, I want her to have as little pressure as possible. So we'll see!
We have finally gotten moved into our new little house and I really do love it! It's literally half the size of our other house, but it has an extra bedroom, so we decided to let Mickie use it as an "art room". She's already begun covering her wall with her beautiful colorings/paintings!
We have no "planned" appointments until 12/3, but we have four doctors during the first two weeks of December. It's going to be pretty busy! We're getting our Christmas cards ready and getting Mickie ready for her Christmas pictures!! Since money is tight, I actually got her Christmas sweater on ebay for $1.29 (yup, that's NOT a typo!) and I bought her a $6 pair of shoes and painted them myself. What can I say, it's a crafty thing!!
Have a wonderful week and please don't forget to share the page as well as her facebook page with everyone so we can continue to get her story out there!! I'm still debating whether to take her to an actual HHT treatment center (the nearest one is 5 hours away) or let the docs at Vanderbilt treat her. She has such great doctors for just about every part of her body, and everything is so expensive, but sometimes you forgo your cable bill every now and then to make sure you keep you kid healthy, ya know??
P.S--Thank you for the song Jess, that describes us perfectly!
I wanted to give everyone an update on today's visit to Vanderbilt. We spent over 14 hours driving and visiting doctors, so it was a LONG day!!! Our first visit was with the geneticist and genetics counselor, and that lasted about two hours. They were really amazing, did a full body examination and took a very thorough history. Once he started noticing things on Mickie, he started examining me.....and behold, both she and I do apparently have HHT (she has it way more severe than I do though). He also determined that we both have a connective tissue disorder called HyperMobility Syndrome, which leaves us with very flexible joints, but can cause cardiac problems and bone problems. The HHT is what we're worried about now. We've decided to hold off on the septo-dermoplasty and go with the "more conservative" approach, because in full agreement with the geneticist, "She's been through so many surgeries this year, we can't put her through anymore. One more surgery may be the end of it". Not what I wanted to hear, but a total reality check. So he is about 90% sure that she does have HHT, and we did the genetic test as a formality. We are due back to him in about two months. He is also wanting the neurologist to do an MRA on her to rule out any AVM's in her brain. Apparently with HHT, AVMs form in the lungs and brain primarily, then in the stomach and liver secondary.
Next step was the ENT. He numbed up her nose and ran the camera down into the back of her throat.....again......not her most favorite thing anymore. Luckily there is no bacterial infection that he could see, but she does have a viral infection, so because she's about finished with her azithromycin that was given to her for GI issues, we are giving her a round of steroids to take for a week (high dose) to kick the infection out. That should work....hopefully. We'll see him back on the same day as the geneticist.
So next step is the GI to schedule a scope to make sure that she's having no internal bleeding. We've been advised to ask him to look for any potential AVMs while he's in there, and of course there will be a risk of bleeding, but we need to find out what's going on in her stomach. We will also see the neurologist next month and do some tweaking of her meds and hopefully get an MRI/MRA and possibly another EEG.
So that's our Vanderbilt update!! I know it's long, but you should try actually doing it!!! It's not fun!!! We're hanging in there though!!!
After we finished our five hours of Vanderbilt, we headed over to the Opry Mills mall for a much deserved lunch at the Rainforest Cafe. We finished and headed over to Build-a-Bear, where Mickie proceeded to build a "chemo bunny" to take with her during chemotherapy. And behold, she has named him, fittingly, "Chemo". I love her!!!
Thank you all so much for sharing Mickie's story. We've had over 130 shares since we started on Thursday night. We've raised $150 so far and our appreciation is more than you will ever know! Mickie's facebook page has 98 likes as of this update, and all we can ask is that you continue to share Mickie's story, and keep posted here for updates! We will be headed to Vanderbilt on Thursday for confirmation of her diagnosis before we start the chemo. We also had our interview today with Miss Megan, who is a news reporter from WRCB in Chattanooga, so we will hopefully get more supporters as her show airs!
Mickie made it through an entire day of school on Thursday and Friday last week, making that 3 full days since 10/23! We are so proud of her for charging ahead! She'll crash when she gets home, but she's earned that special nap!
We are spending this week moving into our new (smaller) house, with our big moving day being on Saturday! Our awesome landlord found us a smaller house and he is keeping our rent the same because he knows about our problems and knows that we just can't afford to go any higher. We can't ask for a greater landlord!!
I hear people tell me all the time, "But she doesn't look sick!" Of course not! And I don't want her to look sick! Mickie was born healthy......beautiful and healthy!! So it came as quite a shock that she's been diagnosed with mulitple diseases/illnesses mostly in the past 2 years. She was diagnosed with Juvenile Myoclonic Epilepsy with JANZ syndrome in June 2013. She started having these episodes on top of her usual nosebleeds, and she would have severe headaches afterwards. Her post-ictal state would last anywhere from 6 to 14 hours. Normally she would just sleep, but if you woke her up, she would stare straight ahead, and take forever to answer questions....usually only one word answers. Because of her seizures, she suffers from memory loss. She will forget up to 2 days prior to the seizure and there's no getting anything back. Imagine studying for a test for 2-3 days and then having a seizure....we literally have to re-teach her everything that we studied! Another example is when we saved our money and used our tax return to take Mickie and her friend on a trip for her birthday to Disney World.....Mickie has no recollection of that trip at all (yup, wasted trip ,wasted money, and only pictures to show how much fun she had). I honestly cried (and still do) at the thought of my daughter constantly dropping things, struggling to remember things that she's known for a long time. I have been working as an assistant to a neurologist in Chattanooga, TN since we moved here from Virginia in 2008. His partner sees pediatric patients and immediately scheduled Mickie for an EEG when he happened to hear me talking about her symptoms to a co-worker. Sure enough, he pulled me in his office and explained that Mickie was having seizures "all over the place" so she instantly became his patient. She's been on seven seizure medications since then, and two of those she was severely unable to tolerate. The seizures are still not controlled and she will still sleep forever when she has one. Right now the they are focal/petit-mal (absence) seizures, meaning you really can't tell she's having a seizure until you're looking closely at her. She basically looks like she's staring off into space. Mickie recently had a Vagus Nerve Stimulator (VNS) implanted into her chest with a wire running up into her neck and wrapping around her vagus nerve. It's basically like a pacemaker for her brain. Every 3 minutes it sends shocks that last approximately 30 seconds, leaving her voice to vibrate for a short time. If she has a seizure or feels "funny", there's a special magnet that she wears that can be swiped across her chest where the battery is to send an extra "charge" to her brain to help try to stop the seizure, or at least make it less severe. Mommy and Daddy are trained on the magnet and have to carry one, and her teachers are also trained on it as well! She's seen the neurologist three times since her implant and we've had to amp up her VNS each time and bring down the time intervals. The only improvement we've seen with the VNS is that she doesn't sleep as long after a seizure. So, instead of sleeping 20 hours, she'll sleep maybe 4-5 hours. I'm not seeing much improvement in the way of reducing the number of seizures that she has. She seems to be having more nocturnal seizures lately, which involves wetting the bed and either biting her tongue or biting the inside of her cheek. We've learned that if she sleeps through her alarm for more than 20 minutes, she's probably had a seizure, so I'll sneak in, turn it off and let her sleep. There's no use in even trying to wake her up.One of Mickie's medications, Fycompa, was started in early October. She started going down hill and on October 15, her school called and said I needed to come get her, something wasn't right. Sure enough, she barely recognized me when I got there and when she stood up, she couldn't even walk, so I had to hold her by the back of her sweatshirt. It all kept going worse from there. She began sleeping 20 hours a day, becoming incontinent, unable to write, walk, or carry on a conversation for more than a minute before she forgets what she's talking about. After two weeks, we had to put her in diapers because she literally had no control over herself......we think she also had seizures by this time as well, which wasn't a good combination. Needless to say, her medication was finally stopped, but for some reason, the side effects didn't stop. She still has a lot of balance issues and memory issues. I just want my baby girl to be back to normal. She is luckily keeping up with her schoolwork. Epilepsy is only the beginning for Mickie: In the past 5-6 years, she has been diagnosed with: 1) Juvenile Myoclonic Epilepsy with JANZ syndrome 2) Severe Eosinophilic Esophagitis 3) ADHD 4) PFO (hole in her heart) 5) Chronic Sinusitis 6) Chronic headaches 7)Hereditary Hemorrhagic Telangiectasia (HHT, a rare bleeding disorder) 8) Over 20+ environmental allergies 9) Reactive Airway Disease 10) Chronic Nosebleeds 11) Vitamin D deficiency 12) Ehlers-Danlos Syndrome, Type III 13)Croup x 2, 2012, 2014 (normally kids don't get it after the age of 10--she's just different lol) We are a simple family of three. Matt and I married in March 2011, and Matt officially adopted Mickie in August 2013 after we terminated her biological father's parental rights. We also have a small dog, Bristol, and our hairless cat, Moonshine. We have it worked out pretty well where I work days and Matt works evenings/nights so that someone is always home with Mickie. When she has her seizures, she can be very disoriented, so it's good to have someone around! When she's having a good day, we love to go play tennis, walk through the battlefield, feed the ducks at the pond, head up to the lake for a day of swimming and tanning, and occasionlly go bike riding! If we have the money, we'll take an occasional trip to the zoo to get away from it all!
Through all of this, Mickie still won't let anything get her down. She's in intermittent homebound from school and has a 504 in school to help her with testing and classwork (which means she goes to school when she's well and when she's not well, she stays home and her amazingly wonderful homebound teacher comes to tutor her). She's been to school maybe 10 days since October because of all of her medical issues. She is also a Level III, First Degree black belt in Martial Arts (TaeKwonDo). She's been doing martial arts since 2011, and her instructors had been extremely protective of her, continuously reminding the students not to touch Mickie in the neck or head. If they hadn't done this, we probably would've had to quit. However, she has not been able to do it since October, and her heart is still very much a part of it. She's determined to get back in there and fight, and I'm not going to stop her! Even when she's had a seizure during the night, she will wake up completely exhausted, but still get dressed to go to school. Usually we end up picking her up a few hours later because she can't stay awake!
We have decided after much reading and research that a seizure response dog will be extremely beneficial for her. The neurologist believes that her seizures will become Grand Mal within the next 1 year (once she gets hormonal and her "cycle"). These seizure response dogs are able to provide comfort for her by laying either on or next to her after she has an episode, may alert people that she's had a seizure, retrieve a phone or her medications, etc. I believe that the dog will help with her confidence and self esteem issues as well. Imagine being in school and having a seizure and urinating on yourself because it's beyond your control. I would hate that for her, but I think that she will do a litle better with a furry friend by her side. It's amazing what these creatures can do, and the bonds that are formed for life! It took us about 4-5 months to do the research, find the right companies to apply to, discuss it with the right people, just to make sure that this was the best thing for Mickie. The application process alone is grueling and sometimes the applications alone can be up to 14 pages! We've entered into a contract with a wonderful company in Illinois called Sit Service Dogs. Mickie's dog will be trained specifically for her needs. If she leaves her phone in a different room, the dog will retrieve it. If she has a seizure in the shower, the dog turns the shower off so she doesn't drown. The dog will turn her over so she doesn't choke, and will lick her face until she comes out of her state. The dog will also be trained to swipe Mickie's VNS with a magnet!! However, these dogs are extremely expensive and we, as the clients, are responsible for coming up with approximately $10,000-12,000 for these amazing animals, which includes the training, lodging, travel, etc. We also will have regular grooming and vet visits as well. We must take two weeks out of our jobs/school/etc to train every day for the new dog before it's ready to come home to our family. It is extremely difficult for us considering Matt and I both work full-time jobs, we have no money left over each month after paying bills and getting Mickie's meds because her meds cost almost as much as our house payment each month! We started this page in November 2013 and originally had been using the donations towards her medical bills. However, when we decided to partner up with SIT to get Mickie a service dog, we'd already raised $1500 and paid a lot of her medical bills. So it's like we were starting fresh from $0.
This is where your help comes in! We would appreciate it if you would share this page with your Facebook/Twitter/Pinterest, etc friends and family to get the word out there and help us get a seizure dog for Mickie!! She deserves it because she is completely one in a million. I would never trade her for anything in the world! She has proven to be a huge inspiration to everyone that meets her!
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