For all of you who have come to love Melissa and our family, we are excited for you to see her most recent improvements. Watch her go! These two clips (3:41) are from a longer video Brian and I made yesterday while we were doing PT with her. It’s amazing. She is so awesome!
She has been working quietly and so hard for so long, and so have we and her caregivers, all the way back to the moments after which she had her seizure, 19 months ago. For every person who has ever helped with (with) her – thank you, so much. It’s been incredible and exhausting and sometimes exhilarating, but always worth every ounce of effort. We are so lucky.
Of course, we can’t predict the future. Interpreting appropriately what all this means is not easy. We do our best to live in each moment, and make each moment count. Each moment she is with us is such a blessing. As dreary as this can be, as tiring, as loving, as sorrowful, as joyful, it’s all SO WORTH IT when we see her do things like this.
Let’s all celebrate Melissa’s heart, the heart of a lioness, a mommy lioness.
Melissa has been holding steady, perhaps even improving. One step forward, one back two forward, one back....
Fall has set in, of course, so the days are cooler. Today was a beautiful day to go for a little walk, as the pictures attest. Melissa was very awake today, for whatever the reason. I got her up, took her and West for a little walk, and seemed to really enjoy their time together. Melissa woke up with a smile this morning, but that settled in to the look you'll see in the pictures -- kind of just, interested, aware, looking around. Today, in particular, she was turning her head back and forth, looking around inquisitively, moving both of her hands a lot, and her right much more than she has been. That's good because she has been suffering on her right side from some "tone" for the past couple weeks. Just as important, she was using her right hand and fingers to grab at things, and to reach for things, and for people, as you see her here doing with West. At one point toward the end of the walk I asked her to grab West and make sure he did not get down and, as you can see, she did just that. Brian has talked about how we try to let her mother just as much as she can, and my guess is that this felt nice for her, to provide a little protection for her little guy.
West, of course, is waiting on no one. He has grown three inches since he learned to stand. But he does wait on his momma. As you can see, he is quite content to sit on her lap while we stroll in the chair. And that really is not like him. More and more, recently, he is taking to kissing his momma, and less and less is he pulling her hair. :) One of the things he does with women generally is to hold their hair. Any woman who holds him, he just puts his fingers in their hair at the nap of their neck, and keeps his hand their. Typical male, maybe -- loves to run his finger through a woman's hair. :) Anyway, I could not a picture today, but at one point he did have his right hand up behind her head, with his hands in her hair.
Just wanted to put up a few pics and let everyone know that we continue to appreciate all the love and support. Be well. Happy Halloween.
As you know, I (Papochka) am back to work at Fresno State, and it’s been crazy. I’m doing lots of new stuff in several courses, including teaching my first on-line courses – I’ll never do it again, but that’s another story. In short, I’ve been so busy that I haven’t had the energy to write, nor have I been around Melissa much at all. It’s strange, going from being totally involved to not being very involved. But we have awesome caregivers, and that’s why we trained them so well – so all of us could get back to our “normal” lives.
But things have been happening. Melissa’s routine is pretty active. She gets up in her chair and/or on the mat several times a day. She has appointments at speech therapy. She has physical therapy once or twice a day with our caregivers and volunteers. She has two massages per week. She goes on walks. We take her on excursions. Brian has taken her shopping to J Crew for some clothes even, and to Pieology. We keep her busy.
And we’ve been playing around with her meds, cutting her back on some that produced sleepiness, and she has been much more awake and aware recently. Which brings me to last night.
When Amanda was getting ready to move her for PT last night, she heard her mom talking in the kitchen and turned her head that direction, motioned with her right arm, and seemed to want Lawanna. So, Amanda called her in and Melissa looked intently at her mom and seemed to want to say something. So we capped her trach – so she could run air past her vocal chords – and she tried to say something. In the end, she apparently was trying to say she wanted to use the toilet. So we moved her onto the bedside commode and there she and her mom sat for a while. Brian and Amanda were in there too. She had a smile on her face.
Though I did not witness any of this because I had taken West up to bed, at various points through the next hour or two, Melissa was able to say, “Mom,” “Lawanna,” “I went for a walk,” “I want to sit,” and, “I’m on my back.”
This really is exciting for all of us. We continue to have no idea how far she might “come back,” or how long it might take – it’s been 18 months since the seizure – but we are SO PLEASED.
Just this morning, while Brian and the baby were sleeping, after Lawanna went off to work, and in between caregivers, in the hour I usually watch her, she was wide awake. Though she tried to say some things to me, I could not understand it. But her eyes were focused on me, and she was really working to get enough breath to go over her vocal chords – it’s a chore for her – to say something. Because I’ve been working so much, I shared with her how hard it is to be away and no longer be a primary caregiver. It was a nice moment or two, a quiet few minutes before a busy day ensued. Then the baby cried, so I went up and took him so Brian could get some more sleep. Normal for us.
So, there you have it. A brief update with good news.
We continue to be humbled by whatever support each of you contribute.
We’re sorry for those of you who follow Melissa’s story here, but not on Facebook. We have not posted to Gofundme for a while. Simply, life has kind of overtaken us, though not because of emergency or trauma. Instead, life is unfolding in both a busy but steadily “new normal” way.
Foremost, Melissa is doing well. She still cannot talk or communicate much. And she still can’t meaningfully use any of her limbs or extremities to help herself. But she is doing fine, improving, if little by little. She is generally more healthy, on fewer medications, and looking better and better. She is also more aware, able to pay attention better and follow what’s going on around her. We have also been able to move her into outpatient therapy, both because she is progressing and because we were able to finally secure a mobility van for her. Now we can take her places, including the doctor. Just yesterday, for instance, we were able to go to her therapy in the morning, then go out to Gigi’s to pick up West, who had spent the night (at his great grandmothers’ – Gigi), then go to the pharmacy to pick up meds. Melissa got a 45 minute car ride, and when I asked her if she was enjoying looking around at the passing city, she gently closed her eyes and then opened them, our signal for yes.
West is growing like a weed. He has 7 teeth through now. He could walk if he wanted, but he still crawls on his hands and feet (not his knees). He’s our little Mogli (from The Jungle Book). He is loving, and active, and screeching. He is just a real joy. Even being away from him to work for a few hours leaves a hole.
The family and caregivers are always busy. Melissa requires 24-hour care and supervision. Thankfully, we have a fully developed team of caregivers, having at least one such caregiver in our home 23 hours a day. The one hour we don’t is from 7am-8am. Our caregivers are just great. We have at least 8 who are from outside our family, but they are also “family,” or are becoming such quickly. We would not be able to do this without them. Thankfully the County of Fresno and the State of California and our insurance company is quite generous. Your contributions are being put away against a time in the future when they will be needed. One just never knows. Thank you for all your continued support and interest.
We were awakened this am early by our night nurse informing us that Melissa's heart rate had not gone down, as we had hoped it would. Instead, it was up. She was tachycardic again. So, back to the hospital. We don't suspect it's anything major, or that she will be there any longer than to get some fluids via iv. But it gives me the chance to put together an update -- since I'm up and I might as well stay up. Actually, I just went into work early.
Melissa has has a tough couple weeks, actually. She had a stomach virus that produced some vomiting, but that more importantly has kept her from being very responsive. She has gotten over that, but bouncing back has been slow, and she is only now getting back to being more responsive. Unfortunately, however, she has also been having entire body length spasms, mostly on her left side, for about a week now. This has meant that we have been treating her with a pain killer that knocks her out. We just found out that the reason for this was that her sodium level was low -- we all cramp when our sodium level gets low -- so we adjusted her medication that helps her regulate her urine output. The problem? It causes her to void so much that her liquids get low, and she gets tachycardic. This all pints to the difficulty of managing her complicated medical situation. Two steps forward, one step back....
We also visited the radiation oncologist -- something like the 8th or 9th of Melissa's doctors. What we found out was sobering. Though there is no evidence of the benign tumor's resurgence, there is about an 80% chance that it will. There is also a 20% chance that it won't. Percentages. That's the world we live in. All in all, the news was about the best we could have gotten, especially given that a year on, the latest MRI shows no return. That's good.
Yesterday was a big day for Melissa. Her mother is relentless. First, she loaded her in Gigi's van -- not a wheelchair van -- and took her to her eye doctor so her new glasses could be fitted for her. Interestingly, and inexplicably, her vision improved as a result of all this, going from about 20/400 to 20/250 in each eye. Her difficulty is seeing things close. Anyway, Lawanna got her there, got the glasses fitted, and then took her for a hair cut, to Supercuts. Her new "do" looks so cute. Very short, very easy to deal with. It brings out her face. But doing all that -- two things -- is so taxing. It took about 5 hours, two in-and-outs from the van, and Spenser and Jaimie, one of our care-givers, helping out, all while Spenser followed the van with the wheelchair. I say all of that just so those of you who don't have experience with this kind of thing can get an idea for the logistics of this kind of thing. So, after a day like that, when we were awakened this am early, Lawanna was very, very tired.
West has also been sick this week with some kind of intestinal bug. Poor kid. He has not vomited, but the other end has been very active, and his poor bum is so sore. We have had to hold him a lot, which is, of course, a two-edged sword. We love that he is so affectionate, but it's hard to get anything done too. But he's at Gigi's, so he is very happy, being spoiled by great grandma.
A friend brought him a wagon. It's really cool, not like the Red Flyers we all grew up with. It's plastic, with two seats, and even a door. I took him for a spin the other day and he loved it, sitting upright, able to look all around. He's changing so fast. He has started screeching, actually. It drives me crazy. He sounds like a raptor or something. And it's so penetrating. It's almost worse than his crying. And he now points at stuff that he wants, and then screeches. But he's also starting to say "ma" for more. He says it, then he points, then, if you're not fast enough, he screeches. It's both hilarious and way too much. And he's given up on crawling on his knees. Now he just scurries on his hands and feet. I'm now calling him Mogli. He's so fast. And because our first floor is all tile, you can hear, slap, slap, slap, slap, as he races from one spot to another. Then he stops, sits, looks back, smiles, and then heads off. And when he is upstairs, and you are downstairs, he sounds like a herd of large animals. Hilarious, and so cute. (Grand)parenting -- priceless.
So, we continue to be blessed with the two joys of our lives -- Melissa and West, both the absolute joy of our lives. Melissa is so beautiful, and caring for her daily has brought out such a bond of affection. If love is doing for others -- and it most certainly is --
we get to love her so much. Mostly passive, she has to receive it, and we are so thankful that she knows us, and that it is us caring for her. This morning just before she headed off to the hospital, I was able to explain to her what was happening, and with that new haircut, and those penetrating hazel eyes looking intently back at me as I spoke with her, I was struck by how beautiful she is and how much I love her. And yet, it is so sad.... And West is just the opposite: so active, so engaging, and yet just as beautiful. And yet it is so sad: Brian works away five days a week, so he misses his wife and son; Melissa can't really participate in every and each milestone West meets; and West has neither his daddy or his mommy the way he would otherwise. It's just all so sad -- and beautiful.
Team Melissa Update
All the one-year anniversaries of the trauma are past.... All the talk I have engaged in since last March about "the long haul" of this kind of thing seem defined by a haul much less long than the one we're in. Behind it all was a faint hope that really months, not years, would bring more discernible improvement than we have been able to enjoy. The haul seems like it will be longer than I thought in those early months. But everyday things happen, important things. But just as we all have had the experience of taking fewer pictures of our children as they get older, so it feels to me like I have less and less to say, or less and less motivation to keep talking about what seems to be a rather perverse kind of "Groundhog Day." I think that's how it's supposed to be, or, that's how it works, but I've never been through this. Each new day is really a new day, filled with experiences we have not yet had, if that makes sense.
Several people have sent us meals via takethemameal (see the "about" section here on FB if you are interested). It's been really nice. Thank you to all. Today, I talked to one woman who turns out to be the therapist who "took" most of Melissa's clients/patients when she became ill. It was very moving to speak with her, for the first time, after a whole year. Melissa recently indicated to us that she wanted her phone, apparently so she could check on her clients, so she had been thinking about others in all this, and then I get a call (and a meal) from the person who helped so many of them. We don't often think about those people, but they were traumatized too. Only those people -- like me -- who have depended on a therapist can fully know the fear of "losing" a therapist, but they were victims too. I'm just glad that Melissa's friends and colleagues so effectively took care of them. Obviously, Melissa wanted that.
Well, things are good.... We had a bit of a scare on Tuesday evening, as Melissa's heart rate worked its way into the 130s. She took an ambulance ride to the hospital, and after 6 hours, and by 3am, they determined that the chest clod that's been going around (our house too) probably had gotten her. An antibiotic treatment and some tests were administered, and we had her back in her own bed, at home.
As has been clear on SMC on FB, she is progressing, even if there are a few steps back once in a while. We are still figuring a lot of things out, really. There is just so much to stay on top of. West adds to the "adventure" of all of it, as he is now crawling very fast and, therefore, making his presence known even more than we are used to. The "speed" of things is seeming to increase, even if our routine is now better known. He too has the chest cold. And his first to upper front teeth are finally through. Every day it's something new with him.
Meilssa is "working" a lot. Everyday she is out of bed two or three times, and now for several hours. She is being stretched and made to move "on the mat," rediscovering very basic but important things about movement. We are careful, however, to also have her rest enough so that when she does work, it's enough to challenge her, but not so much as to "knock her out." In the last week, I may have noticed her being awake less, so we want to make sure that is not because we are pushing her too hard.
Even with all the help we have accrued, we are still always exhausted around here. It would be one thing to have just Melissa. That would be exhausting. But to have West also adds to the challenge. The physical part of it is plenty, but the need to stay vigilant presses in a different way. We "go" literally from the moment we awake until the moment we go to bed. It sometimes feels like too much -- though it's not. But it sure is tough. Even today, as Brian got a three-day weekend and therefore has been able to spell me, I'll be "away" for several hours but am tired even as I sit in my office trying to catch up on things I have not been able to get to. I'm sure it will feel at the end of the day that I have just caught up. Thankfully, I have been able to get back into the practice of playing tennis two or three times a week, and to be around my great friends who also play. But there is no getting ahead -- she is always there, needing a vigilant and caring eye.
So, that's how things are, in a brief nutshell. Nothing much new.
Grace, Peace, and Love
Papochka (Melissa's dad)
A note on the pic: Mel and her super-dear friend Abby, in better times. That energy and beauty and life are just parts of what we so miss and the reason why we keep pushing her and ourselves -- to get it back.
Yesterday (Friday Feb 13th) started at 5 am when the ambulance company showed up to take Melissa to SF to see her neurosurgeon, Dr. Theo(dosopoulos). Arrived and were in the office by 10, out by 12, and back in bed by 430. She travels well.
Seriously, in layman's terms, Dr. Theo was exceedingly impressed with Melissa's progress. We showed him a video of her talking back in December, and told him of her recent improvements. Basically, he said she could continue to improve, or stop at any time. But he also made it clear that what she is doing is clearly cognitive in nature, and it's her brain that's healing, and it's her neuropathways that are firing -- not the drugs she is on. They provide other benefits, but none of them enhance or decrease her cognitive abilities. Even if they sedate her, that's different. The upshot is that we have been right about her -- she has not only been "in there," but she is presently "in there." He also said that there is no data on which to base any prognosis, as we have known.
I'm not quite sure how to say just how much we love Dr. Theo. We cry every time we see him -- and he does too. It's the Greek in him. And my goodness, he is so smart. More importantly, he loves Melissa, even though he has only ever had one conversation with her. And his PA too, Tracy, is just the bomb. I did not anticipate how emotional the trip would be. It seemed like something to endure (and the nine hours in the car was, indeed). But when I walked in the office, it hit me -- these are the people who saved Melissa's life, and who have been with us every step of the way.
As always, there are just no guarantees. But he made it clear that the brain "shuts down" to save itself -- hence, a coma. And in the same way, it "shuts down" everyday, sometimes several times a day, when it can't do anymore. It's like studying "too much" -- the brain says "enough." Well, that's what hers did 11 months ago, to save itself, to preserve its life, as it were. And he also said it will take likely years for it to heal however completely it will heal. It all was both hopeful and sobering at the same time.
Here is a recent post from our Support Melissa Carleton Facebook Page, but without all the pictures. She's doing really well. :)
What did Melissa do today???
PT from 9-10: she contracted her right inner thigh muscle when asked to pull her knee inward; she kicked her right foot in sitting position; she held her trunk more stably; she was sitting up (assisted) for 30 minutes.
From PT into her wheelchair for another walk, this time around two blocks and across the big street (Palm Ave). Today was a beautiful winter day in Fresno -- 73 degrees. This morning was absolutely gorgeous. Sun shining, little warm breeze. West and Norma went with us. All total, she was in her chair on that stretch for 1.5 hours.
We returned her to her bed and laid her on her right side, as you see in the picture. We're rolling her on her side not only because for so long she could not be on her side like that because of the hydrocephalus and her lack of a bone flap, but also because her lungs need it. More and more, her lungs are regaining strength and capacity. Note she is also capped while resting -- the trach is capped and she is breathing just through her nose and mouth. Note her oxygen saturation level is 97% and her heart rate 82. For her that is some of the most relaxed resting she has done in a very long time. And she looks so beautiful, having earned her nice little afternoon nap.
She had a nice bath this evening, including a scalp massaging, head scratching shampoo -- ahhhhhh. Then it was time for more work. After range of motion with her legs, feet, hips, midsection, arms, chest, and neck, she was back on the bedside. And this is where we got the best gift of the day.
First, after getting her to relax her right hand enough to take the hair brush in her hand, I asked her repeatedly to raise the brush to brush her hair. We waited, then repeated, several times. Then, slowly, she raised the brush up to where you see it and held it there. Her right shoulder was very tight -- we could not get it loosened up well -- so that is as high as she could get it. But she followed the command, and she tried to use the brush! Then, after we composed ourselves, I asked her -- again, several times -- to give me the brush and, as you see, she did! BIG. Little, but BIG.
Then we put her in her wheelchair again and she and Amanda, a Fresno State nursing student who is doing a great job with her in the evenings (so we can get to bed at a decent hour), watched some TV together. Then, back in bed after another hour and 15 minutes in the chair.
All totaled: Up at the bedside for PT for an hour and 45 minutes, almost 3 hours in the chair, and a walk to boot. Oh, and she "brushed" her hair and gave me the brush when she was done. (And, yes, I cried -- and so did Amanda).
Things are going well these days -- except that Brian has had to go back to work. Work is not a bad thing, of course, but Brian has been fortunate, as has Melissa and West, that he has not had to work at his job since the trauma. He is finally healed form his injury sustained in the course of his duties as a sheriff's deputy, and he will be working int he courts in Santa Cruz County for the next 8 months. He will be home on the weekends, and we will all miss him. Just as importantly, he will miss us.
Two of the things we've been excited about Melissa's move home is the time she can have with West and the family, and us being able to take her on walks around the neighborhood. Today, as you can see, we combined both -- West and Melissa on a walk together. Melissa's sister, Sarah, is out from Missouri for five days. We have enjoyed her so much. And sometimes West gets to happily hang out on momma, and with Gramma, as you can see in the picture.
The other thing we are excited about is being able to nurse her to as much wholeness as we can, and as she can accomplish. The third picture is of Melissa clasping her own hands. It might not seem like much, but it's the first time she's done this in months. It's therapeutic terms, she is kind of helping herself here. We had to arrange this for her, as her fingers on her right hand are still toned. Another good thing that's happened is that the size of her trach has been reduced from an "8" to a "6." This week we might change that out to a "4," all part of the process of weaning her.
So, a lot of good has been happening since she returned home last Friday. Note that we are not able to post as much as we have in the past, basically because we are providing so much of her care, and West's too. It's really exhausting, even with the nursing help, and all the meals our friends have provided.
Brian and Melissa are a match made in heaven. Brian is policeman and Melissa is a Licensed Clinical Social Worker who until her acquired brain injury in March 2014 did family, couples and children's therapy. Not long after their fairy tale wedding in July 2013 these two had great news. They were expecting a baby boy in June 2014. Melissa's pregnancy started well enough, but eventually became problematic, and after a few months of headaches their world came crumbling down when she was diagnosed with a brain tumor. Before the tumor could be removed, on March 11, 2014, she had what would turn out to be a debilitating seizure. She was rushed in for emergency surgery, but she slipped into a coma, in which she remains. For 10 weeks Melissa, in a coma, struggled to keep herself and her unborn child alive. On May 22nd, 2014, against all odds, Melissa, still in a coma, gave birth to a healthy 37 week old and 5lb 9oz boy, West Nathaniel Lande. Melissa has fortunately been able to move home to Fresno, California, to live with her parents, John and lawanna Farrell, where she is steadily waking up. Brian and Melissa's family remains daily devoted to Melissa and West.
Your entire donation will go to the family and will be spent on Melissa's care, present and future. With your help we can keep Team Melissa going strong. Along with you, we say, Go Melissa!!
Melissa! I miss you. My daughter bent one of the earrings you gave me and even though I can't wear them now, I look at them every day and think of you, wishing you well. You amaze me! Keep up the good, hard work - I can't wait to see you, whenever that will be.