So I feel like it's been forever since I have really written a post with any content. I've just been going like crazy since school (my job because I teach elementary art) started back. My first day was Monday and the kids first day was today. I was so rusty, horrible time management, cracking voice, rambling instructions. Oh well, I know I will get back in the groove quick enough.
I'll try to hit the highlights of the past few days. Sunday Hawk was in the church nursery by himself for the first time! He was sleeping and off food so I figured he would be ok, and of course he was. They held him the whole time and when he woke up they played patty cake and tried to get him to say "mama". Monday Hawk had PT and I think I already posted about that a little but, the PT was impressed with his standing. Hawk is really loving to stand these days and is getting much better. He still needs strong trunk support for balance and can only lift his head for a second but he is holding his full weight. The best part is that he wants to stand up and he communicates that to me by wiggling and stretching out his legs and grumbling. He is communicating in other new ways also! He's starting to smack when he's hungry, grumble when he wants to change positions or he's cold, smiling more, talking some at random times (not just during play) and his face is VERY expressive when I feed him tart foods. He much prefers bland veggies, cereal, or sweet things. I mentioned Hawk had Lekotek play therapy on Tuesday already in a post but I did not get the picture up and I'm sorry for that but I will do that tonight after this post. The picture is on my phone and I'm typing from the computer right now. The lady from Georgia Pines vision therapy came out for the second time on Wednesday. Most of her time was spent asking assessment questions but she did give us a few things to work on. She suggested playing peek-a-boo with toys and seeing if he notices that they disappear and reappear. She also printed out some bull's eye and checker board patterns for us to see if he was attracted to the high contrast. I had already read that babies like high contrast and had worked with him some using a baby stimulation app on my iPhone. And she suggested playing games where you take turns (like I clap his hands, then my hands, then wait to see if he will try to clap) which is what I was doing when she suggested playing games where you take turns. So I think we've got that one down :) So much of this stuff just seems like common sense but I maybe it's because I went to school for education. Hawk's eyes are getting better every day. He really looks at people now. Still does not do a steady track of us or objects but we he will find things if you move them. And it seems like he only "sun downs" now when he's working really hard at something or is sleepy. Today he went the chiropractor but otherwise just had a chill day at home. I fed him a about 3 tbls of cereal/pears/formula mixture by mouth when I got home. We played for about a minute and as soon as I handed him to our friend Laura Beth, he was fast asleep. So I got to cook supper while she held him. John even helped me! I love to cook so that was fun, even though I was so tired from my first full day of teaching. I made PF Chang's mongolian beef. It was my third time making it and not my best but it can't be perfect every time, right?
Today was hard for me emotionally. I can't help but look at all the children at school and wonder what Hawk will or will not be able to do. Where will he fit in? What teacher will he need? Will he ever have a girlfriend? Will he feed himself at lunch? Will people treat him right when I'm not watching? I know this is a downward spiral and I try not to go there but just being honest, it crops up in my mind as I walk the halls in those in-between moments. I figure every parent of a special needs child has these thoughts. Heck, probably every parent has similar thoughts! We all just want the very best in life for our babies. As I type these very private thoughts, some times it hits me, like just now, that many people are reading this. Believe it or not, I'm a very private person. I'm horrible at meeting new people. John is the social one! I guess I can just type all of this on facebook because it feels private while it's being typed from my couch at 11:30pm. It's really a good way to get it all out. And I'm so grateful to my two sweet friends that started this page so early on in this journey and to all of you for listening and supporting us.
Anyway, back on topic...That brings us to tomorrow. Hawk has his helmet fitting appointment at 11am and feeding/OT at 1:30pm. I'm going to be sad to have to cover up that beautiful blond hair for 23 hours a day! But it will be worth it to help his head shape. I hate to miss appointments and therapies but Gramma and Dad will be there so it's not like I worry. I just wish I was there too.
When you send up your prayers for Hawk please say one for John as well. He is still battling really bad kidney stones. He is literally passing about 5 a week, not exaggerating! He went for a CT scan today to see if his kidneys are damaged and to get a better idea of what's going on. We know they are oxalate stones and diet and medicines have not helped yet. Not sure why we've seen this huge increase lately but it just won't let up. If you have had kidney stones then you know how painful and exhausting they are to deal with.
So I'm up this morning trying to design a t-shirt for "ª#"ŽDoItForHawk"¬ and I was thinking, should I put the # in front or not? So I though, well I will google DoItForHawk and see what comes up. It brings up the FB site, the gofundme site, the fundrazr site, and twitter as the first few. I don't have a twitter account so I never really thought about anything being on there but apparently it will let you look on even if you don't have log in. There were quite a few tweets and most of them were from the first few days that Hawk was sick. It hit me like a ton of bricks. First off, how amazing the support has been for us and second, the reality that Hawk could have very easily not made it though those first few days. He was so sick and we found out much later that as the helicopter landed at Egleston, the word around the PICU is that a baby was coming that was not going to live. I remember praying to God that if He was going to take Hawk, to do it right then, begging Him not to drag it out to then just let us down. So now I cling to Phillipians 1:6 being confident of this, that he who began a good work in you will carry it on to completion until the day of Christ Jesus. As the days went on and Hawk made it though the first big procedure where they busted up the clot in his brain I remember John and I standing of his bed and laying hands on our 3 week old and proclaiming over and over again "my baby will live and he will grow and he will thrive!" John and I had a rule that every time either one of us stood up for anything we had to pray over Hawk. I had no idea then that Hawk was "not supposed to make it". I just knew that God had kept him around past the first night so there must be hope. Thoughts of these terrible days are both terrifying (that we could be back there again) and hopeful (because they give perspective on today's issues). The picture below reminds me just how far we have come. We did not post pictures early on or allow very many people to see Hawk, it was just to bad. But now we can look at these images of a reminder of the miracle we have seen.
Please continue to pray for progress for Hawk on all levels and specifically now for his feeding issues.
Oh it's good to be home! I missed my sweet boy so much but we had a great time. Supper at Two Urban Licks was really good. I would recommend it for a cool date night, we will be going back, I hope. Last night after supper, Pablo took us up to the roof of the W Downtown Atlanta. The view was breathtaking, and the fact that we were on top of a building with no fence around it (because it's the heli pad) was terrifying. I promise I woke up this morning with my knees still weak. One of the best parts of the trip was getting to sleep without thinking about if Hawk might throw up, or did he kick the cover off and is to cold, or did I remember to fill up and plug in the food back, and who is going to get up and give the first medicines, and so on... I'm sure you get the picture. Don't get me wrong, I love being a mommy but everyone needs a thoughtless night sleep every once in a while. I'm guessing every mom has their own set of things they think about as the lie down at night. AND we got to sleep late! If you know me, you know I would sleep till noon every day if someone would let me so this was a great treat.
BEST NEWS of the whole two days... Hawk did not throw up!!! Yay for prayers! I really know that you all are warriors for sweet Hawk and I will never be able to thank you enough. When we got home, Daddy took Hawk for a walk in his new hiking baby back pack. John put it on the front of himself though since he was alone, so he could see Hawk the whole time and help him keep his head up. Then John fed Hawk a whole ice cube (warmed up) of sweet potatoes. I'm getting so nervous about going back to work on Monday so I'm trying to get John to do all the stuff I usually do and I know it's driving him crazy because I want him to do it just the way I always do. Again, I'm sure this is a normal mommy kind of thing? Then we watched the Big Brother from Wednesday night but not the one from tonight yet so don't spoil it for me if you are a fan of BB :) I'm so excited to spend all day with my little man tomorrow. I hope he's having another talking day, I sure do love that little voice of his. I will have to savor every moment of the next few days because pre-planning starts Monday. Gotta get that art room ready for 650+ elementary school kiddos!
-Hawk is our only child, we went through 5 years of infertility treatments to get him. 3 rounds of IUI, miscarriage, and 2 rounds of IVF. We plan on adopting other children in the future, hopefully soon. So if you see other children with him, they are all just friends. We are blessed to also have 2 wonderful God-children.
-I had a healthy pregnancy, normal c-section delivery at 41 weeks. Hawk was healthy until 3 weeks old when he had the brain hemorrhage. We have no family history of any of the problems he has.
-He is currently 8 1/2 months old, 21lbs 7oz, 28 1/2 in long, and has gray eyes
-His official diagnosis is Intracranial hemorrhage, Deep Vein thrombosis, Epileptic (even though they do not believe he has a seizure disorder), obstructive hydrocephalus, developmental delays, feeding problem, cortical vision impairment, and possible clotting disorder(though not discovered).
-He is on Nexium for acid reflux, Neurontin for nerve pain, Phenobarbital and Keppra for seizure control, and Lovenox injections for clotting control.
-All the blood from the initial hemorrhage has resorbed.
-His shunt is controlling the drainage of his CSF, his verticals are smaller, and his brain is more relaxed, filled in and has folds. This is improvement seen from a CT scan in May and another in July.
-His blood clots in his arms are gone and the DVTs in his legs and abdomen are better. He has flow in all of them and you can see that his body is also using his surface veins to re-route some of the blood because these veins are so much darker than they should be. I will try to remember to post a picture of them.
-He has not had a seizure in months, the last one I can really remember was in February.
-He goes to physical, occupational, speech, vision, and play therapies for his developmental delays. We work with him at home every day and the pool helps too! He still does not have full head control, trunk control, cannot sit or stand unassisted, cannot crawl or scoot, only makes about 5 "word" sounds a day, is starting to smile some. His hypotonic muscle development (weak muscles) make it hard to do things. He has some tone in the mornings but it's getting better. Some clonis in his ankles and wrists. He has full range of motion and we stretch him daily to maintain this.
-He has an ng feeding tube as his primary source of nutrition. He can eat baby food but does not like to because of his strong oral aversion due to brain injury and multiple surgeries. He failed his swallow study for liquids so we are working on that. He will not suck a bottle when he is awake but will in his sleep. We hope that he will overcome his feeding issues quickly enough to not need a G tube.
-He has had 6 brain surgeries. EVD placement to drain blood, 1st shunt, 1st shunt revision, 2nd shunt revision, shunt removal and EVD placement because of infection, and final shunt placement. These are the only surgeries he has had.
-Hawk can see, we are just not sure what or how much. His optic nerve is normal. His vision problems are due to the brain damage.
-The doctors believe that Hawk's bleed came from a clot that backed up a vessel in his brain and caused it to burst. He has since clotted off a PIC line in his leg, causing the DVTs to form, a PIC line in his arm causing a small sub-clavian clot in the right arm, his blood pressure cuff that was left on in the PICU caused a small clot in his left arm. He has also clotted off IVs, ART lines, and his urinary catheter. He has been tested for every clotting disorder that has been discovered and all results come back normal. He will be tested for new things as they come out but until then, blood thinners are the treatment.
-Hawk lives with his Mommy (Katie), Daddy (John), and Gramma (Fran), 2 boxers (Rowdy and Sneaky Pie), and 2 cats (Bob and Target) in northeast Georgia.
-Hawk seems to like big stretches in the morning, his hands, the sound of his kitties, the feel of his doggies, the color blue, things that make noise when he plays with them, swimming, standing up, other children, Mommy's voice, Gramma's lap, Daddy's kisses, sweet potatoes and Krispy Kream glaze!
-We attend 12 Stone Church, Flowery Branch campus
-We believe that God has a calling for Hawk's life and we pray for His perfect will, complete healing, and blessings for you all. We praise God for Hawk and the many blessings He has already given us.
Hope this is clear and gives you specifics to pray for and let me know if you have any other questions.
Hawk says "it's hard to wake up on a Monday morning!"
Hawk has been throwing up with his bolus feedings the past week or so. We can't figure why he was toleration fine for a couple of weeks and now he can't seem to take the full amount. He still does not throw up food, just mucus, saliva, and sometimes bile. We have tried running the food over a slower rate, tried feeding him baby food before, baby food after, no baby food at all, just working his mouth with an empty soon to get saliva going, not working with him at all while he's taking the bolus, we already space out his meds (started that when we were inpatient rehab), he sits at an incline while he eats, we've just had to lower the amount we feed him. Some of my friends pointed out that if he was a "normal baby" he would eat more during a growth spurt and on days he uses more calories, and less other times. So maybe that's it, he's just needing less right now. This morning he finally tolerated the whole 90ml without gagging or throwing up. We were so excited but about 10min after he was done he threw up some clear and bile It stresses me out because I hate to see him throw up, it's so hard on him, and I know each time it happens that his oral aversion gets reinforced. Plus, he needs the full calories and hydration to grow and stay healthy and the nutrients for his brain. I know that throwing up is associated with brain injury but I felt like we had passed that point. And I know it can be an indication of nausea from his shunt not working but we've been there before and I know what that's like, when it's that reason he throws up all the time and it will be all his stomach contents. This just happens after a bolus only! Praise God I can be confident that it's not because of his shunt and head pressure!!!
Onto other news, better news A vision therapist from Georgia Pines came today and did her first evaluation on Hawk. She gave us a little homework, some things we were already doing like telling Hawk everything we are doing. For example saying "up" when I'm about to pick him up, or narrating his bath and diaper changes, basically narrating his whole life. Another thing that we have not tried was to carry him around in a dark room but shine a flash light on things and see if he looks at them. So we will try that tonight. She is going to come twice a month to work with Hawk on his vision. In feeding therapy on Friday he did really well with eating and reaching for toys that were held midline in front of him. Our feeding therapist is actually an occupational therapist so she works with him on some of that also. She suggested putting a mirror in front of him so he can see himself reaching for the toys to help develop hand eye coordination. She also gave him a new mouth toy that he really loves! It's like a short flat spoon with texture on the spoon part and a thick and textured part on the handle. He will actually hold it by himself for a little while! And he loves to chew and mouth it. Gramma worked with him for a good hour last night and he moved his mouth the whole time. That's a long work out for your mouth! My friend Katie gave us some of her homemade sweet potato baby food (Hawk's favorite) and he ate some with the spoon last night. I had him hold it while I help over his hand lightly and we would scoop in the blow and bring it to his mouth. He did really well!
Hawk stayed in the nursery at church without us for the first time yesterday. He did have a close friend, Aimee Underwood, with him. But not Mommy or Daddy! So that's a big step.
I have updated the "about" section of the Facebook page with current info and I'm going to post an overview update today and answer a few FAQs.
Please pray for Hawk to tolerate his food, to continue to grow, for his brain to heal and for him to thrive in every way possible, every day!
Hawk had a quiet day at home with Gramma. We did a little stretching on the yoga ball. We put a stool up next to the ball to sit on and then put Hawk's feet on the stool and lean his body on the ball. This is to let him feel pressure and weight through his legs and feet. We can really see him wanting to stand on his own more since we have been doing this and kind of the same thing on the steps in the pool. Tonight he stood up with me holding him under the arms 3 separate times for a good minute each time. After the first time I sat him down for a break and he wiggled his legs to where i could tell he was not done standing and wanted back up, so up he went. It's so exciting to see him wanting to stand and working so hard. It was also cool to see how tall he is when he stands up and to see his body shape. He's such a little stud. He threw up this morning with his second bolus but it was with a poop so not to worrisome, but its still hard to watch. He only throws up clear or yellow bile. We guess maybe its because the milk fills in from the bottom of his stomach and pushes the stomach juices to the top? Really not sure, but he does not throw up milk and it happens at the end of a bolus so we know there is milk in there. He is on Nexium for acid reflux, but I wish there was a baby version of Tums so we could help his mouth and throat be less acidic after he throws up. We do brush his mouth out with the little oral care sponge on a stick. He got through the 6:30pm bolus without throwing up though!
We want to give a huge thank you to two people that have helped us around the house the past couple of days. John's long time friend, Brian Allen came over and worked with John all day on the wall that flooded in the basement. We are hoping to get the siding back on soon and wrap that up. And Dee Rylee came out and replaced our water pump in the house. It was still pumping in lots of granite with the water unless we changed the filter all the time. It got to the point where i could see black sparkly in the bottom of the tub after I drained the water! I know I've said it before but I will say it again, we have such a great community!!! So many people have helped us through this season of our life and are continuing to help and its so appreciated. I know we have not thanked everyone, particularly things that were done during the darkest times because it was just not what was on our mind at the time. And I know that those people understand but, it still makes me feel ungrateful. For example, Michael and Heather Brown at the Leopard restaurant had a fundraiser, Shane Wilburn organized the Brantley Gilbert fundraiser and all the middle schoolers gave so much money, my elementary schoolers sold blow pops and and teachers gave to equal $1,000, Krissy Gives Back sold art work, a small group at our church gave a generous donation, and my best friend Katie (pregnant when this started and now with a new baby) has gone above and beyond what anyone could imagine! Even with all that said, I know I'm still forgetting people. What's great to think about is that I know I will never be "done" thanking people because I trust that God will keep sending wonderful people like all of you to help and pray for Hawk and us. And that helps me put one foot in front of the other each day.
On that good thought, I will go to bed and give my mom back her IPad that I'm using to type this
The Toads and Teacups consignment pre-sale was awesome! There was so much stuff and these folks that came out to the pre-sale were professionals. There is still alot of stuff there for those of you that want to go tomorrow through Saturday. When we first got there Hawk had to take a bolus feed and he threw up after it was over. I think his feeds are to much for him so we may back them down a bit or slow them down. I took him to the car and got him changed. After that, we found a carrier for Hawk that is great. It's a hiking pack but it's perfect for Hawk because it's an actual seat instead of fitting like a pair of underwear, which is great because it does not cut off the blood flow to his legs, which would be bad considering the blood clots in his legs. Brandon, the owner of the sale and our friend, tried it on for us and Hawk loved it instantly. They walked around for a good hour! By the time we took Hawk out he knew what Brandon's voice sounded like and looked around for him when he talked We had a great time and are so thankful to Brandon and Katy Hastings for helping our sweet boy so much.
We love our sweet nurse Amanda! Thanks to her for always taking the best care of Hawk. We are either getting teeth soon or all this food by mouth is really effecting his belly but, Hawk had like 5 poops yesterday. And he sometimes throws up when he poops because he's still does not have the inner muscle strength to coordinate it all. So this morning around 4am we heard him throw up and sure enough there was a big poop! He rarely ever poops at night so I check his temp and it was 100. As nervous as I am about him getting a stomach bug, it's so nice to not have to wonder if its his head. So we stopped his food and flushed the 8am meds with about an ounce of pedialyte. Then tried a bolus at 9:30am. He only took about 2 ounces before he spit up so we stopped at that. He had PT at 10am and did really well. Then we stopped by the pediatrician's office just to let them look at him. Took his temp again and it was fine and he was very happy so I think he's fine. He was kicking and made two sounds for the doctor! She was very impressed. He has peas for lunch and tube fed formula. Then a nap and now he's playing with his toys like crazy.
We are pretty sure he said a real word yesterday! We had just woken up and I laid him down to play while I brushed my teeth. So he was in the living room with Granma and I was in my bedroom when I heard "Mama". Quickly, without thinking I replied "huh?" I turned into the living room and looked at Mama and asked her did she call me. She said "no, he did... And you answered!" How crazy is that?!?! We could write it off as just one of his noises that happened to sound like mama but I think I take it as a word :)
The biggest news today... Hawk ate lots of food by mouth... and it's made a big difference in the diaper department! Thanks to everyone for letting me know it's normal to talk about poop...hahaha. I thought it was just a hospital thing. And we went swimming :) We finally got a break in this crazy Georgia rain. Over all a calm but good day. Normal days are fine with me!!!
About to watch Big Brother, good night all :)
Hawk woke up early this morning so I got up with him and did some therapy. He has high tone (tight muscles) and inward flexion (wanting to be in the crunch position) in the mornings so I take advantage of that work on sitting up and crawling position while I can. Most of the time he has low tone (floppy and weak like). We take him off his continuous food drip when he wakes up and he gets 12 hours off with 4 bolus during that time. So about an hour and a half after he's off food we give his first meal. This morning he ate about half a baby food container of peas. He seems to prefer the bland taste of vegetables or cereal to the tart of fruit. I then subtract however much he takes by mouth from the amount I feed him through the ng tube. So this morning he got 60ml of formula through the tube. Lets just say the food is making a difference in the diaper situation, lol, I'm sure all you parents remember when that started to change. It's so funny, I guess John and I got in to this habit from being in the hospital so long, but we still report to each other what the diaper was like (color, texture, constancy). Gross, I know! Now he's taking a nap. I love it when he gets to nap and he's not taking food because he gets to lay flat and he loves that. All through the night he has to sleep on an incline because he's being tube fed.
I can't wait to take him to the nursery again today! We go to church at the 1:00 service so I'm about to start getting ready I guess. Thank you for all your support!!!!
On December 4, 2012, when Hawk was only 3 weeks old, he sustained a massive spontaneous brain hemorrhage. Hawk is our only child, a product of many prayers and the miracle of In Vitro Fertilisation (IVF). Since that horrible day when he was life flighted to Egleston Children's hospital he has had six brain surgeries, 4 shunt revisions, infection in his Cerebral Spinal Fluid (CSF), multiple blood clots, and has spent over 100 days in the hospital. Praise the Lord Hawk is now home and getting better every day. This life altering tragedy has left us with many expenses we never imagined and the uncertainty of not knowing when these elevated expenses will end. We are raising money for Hawk to attain the many things needed to give him the best chance to meet his full potential. A ramp to enter the house on wheels, helmet to aid in the correct formation of his head, an addition to our home for Hawk to have a bedroom directly adjacent to ours, a handicap accessible bathroom, a therapy room and equipment, a garage for protection from the elements when we take him places, private duty nursing when I have to go back to work, medical bills, and the out of pocket expenses related to Hawk's needs are just a few of the reasons for this fundraiser. I am sure unforeseen reasons will be added to this list as we continue down this road. We are not sure what his needs will be as he grows but we know there will be special things that will make his quality of life better and that the medical bills will continue coming. This goal is our short term goal for the things he needs right now. However, we can't even begin to estimate a long term goal given he is so young and we don't know the extent of his limitations. Your prayers are greatly appreciated and if you feel led, please donate to Hawk. You can read his full story, current updates and see many handsome photos on his Facebook page, DoItForHawk.
Thank you so very much, The Harrison's
Thank you so much for your support and above all, please "donate" prayers for our sweet baby boy! God bless.