Giggles Magoo

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It’s been a rough couple of months. Solly’s been doing great, but I found myself discouraged with his rate of progress. In fact, after he turned 6 months, it felt like his progress stalled even though he kept getting older. Feeding became a burden and he even stopped growing. After months and months of working hard, I became sad and extremely anxious over this lack of development.

When I get anxious, I freeze: I’m unable to keep moving forward and don’t know what to do next. And so, I stopped writing.

(Bad decision, Camie.)

In reality, we just had a couple minor blips in the feeding department. No big deal and, in fact, these were “normal” blips – normal for any baby. Luckily, we’ve had a great team of feeding specialists – an ENT doctor, a speech therapist, a GI doctor, and a developmental therapist – who’ve worked hard to get us back on track.

I’m now working on a post to update the past couple months of Sol’s life, and will try to finish it up in the next day or so. In the meantime, please enjoy this fun little video of Mr. Solly Giggles Magoo, taken just this past week while we were driving through Banff National Park in Canada:

Seventh Inning Stretch, Tuck, and Roll!

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I got the best present for my first Mother’s Day. For the first time ever, Sol rolled from his back to his tummy. Granted, the first time he rolled was also while he was in the pool on a raft, but he got it down pat on the ground the next day. He’s now rolling all over the place! Here’s proof that Solly can stretch, tuck, and roll:

Cheering on Mom!

Cheering on Mom!

Sol’s seventh month was full of just a few doctor’s appointments, lots of therapy appointments, and tons of new experiences. First, the fun stuff – new experiences! He went to his first road race to cheer me on, to his first horse show, his first soccer match to cheer on his cousin Eli, and two trips – one to Nashville by plane and the other to Hilton Head by car. As much as we get out of our almost daily therapy appointments, I believe that introducing him to different environments and people are also doing wonders for his recovery. It seems as though each time we take him somewhere, he comes home with a new trick. For example, when we were in Nashville, we noticed that he was kicking his legs much more than usual and at random intervals, and he was in Hilton Head when he rolled the first time. He’s making such great strides.

Playtime in the pool

Playtime in the pool

Now that we are rolling, in PT and OT, we are now focusing on sitting, rolling to the right (he’s moving just to the left now), and kneeling against a cushion while reaching for toys. All of these actions are to get him to the next major milestones of sitting and crawling. My absolute favorite thing about each of my therapy sessions is there is no “if”, there is only “when” – “We are doing this for when Sol will crawl.” Sol’s therapists are doing such an amazing job with him.

Sportin' my new helmet

Sportin’ my new helmet

On the medical front, we’ve had a few appointments this past month. Sol is now wearing a helmet for plagiocephaly, or flat head. Because he could only see out of the left side for so many months, he developed a flat spot on the back right side of his head. His plagiocephaly is only “moderate”, but because the flat spot could lead to other vision and feeding issues, I wanted to correct it. We also had x-rays of his hips after one of his therapists expressed concern about hip dysplasia – meaning that his hip could be prone to dislocation, a problem for when he starts to walk. Luckily, the x-rays showed no sign of hip dysplasia and everything looked great. One of Sol’s legs is turned in slightly, however his pediatrician thinks the turn-in is occurring at the knee and will resolve itself when Sol begins to walk.

Snuggly baby

Snuggly baby

All in all, a great month. We’ve got a few doctors appointments coming up in the next few weeks – hematology, neurology, and NICU follow up – but other than that, we’re just going to keep on chugging and chip away at milestones.

Pediatric Stroke Awareness Month

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IMG_2107May is officially National Pediatric Stroke Awareness Month. Seven months ago, if you told me that babies have strokes, I probably would have looked at you and said, “Ok, but it must be really rare. Only old people have strokes!” I still remember the feeling of utmost despair when we learned that Sol had a stroke around the time of birth. That feeling is still there in my soul and raises its head every once in a while when I’m having a dark day. Over the last six months, I’ve come to find out that while I had every right to feel that despair when we received his diagnosis, there should have been no doom and gloom attached to the doctor’s report. The reality is that with a intense regimen of Occupational and Physical Therapy over the next few (or more) years, Sol’s brain will likely rewire so that he can learn to do many of the same activities that typical children do.

Snoozin' in between therapy appointments

Snoozin’ in between therapy appointments

What if I would have known about pediatric stroke before Sol was born? I certainly would have been more prepared, probably would have known what questions to ask, and would have been more informed to question doctors’ decisions. If doctors would have been more aware of the prevalence of infant stroke, perhaps their initial movements and decisions would have been different, Sol wouldn’t have had to spend as much time in the NICU, and we wouldn’t have a million doctors’ appointments searching for a reason as to why this happened. Trust me, even doctors don’t know that babies have strokes. Many times when we go into our appointments, we are looked at as though Sol has three heads!

Because so little research has been done on infant stroke, there are no concrete numbers on its prevalence. I’ve read that it happens in the range of 1 in 4,000 to 1 in 1,600 births. If 1 in 1,600 is accurate, that means at least one person in my high school had a stroke when he was born. Come to think of it, I think I knew of someone who might have had cerebral palsy, possibly the result of a stroke. I don’t know for sure because his parents never spoke of it, never brought it to anyone’s attention, but I do know for sure that many of his peers questioned why he walked the way he did and likely cracked jokes about it. Imagine the difference if his parents had said something: his peers and their parents would have been informed and could have been more supportive. There would have been zero questions, just understanding. It could have even motivated one of his schoolmates to go to medical school and focus on strokes in babies.

Almond butter. It's the best.

Almond butter. It’s the best.

Keeping all of this in mind, it is my goal to raise awareness of pediatric stroke as much as I possibly can. I intend for Sol to do the same when he’s able. I’m not ashamed of what happened to Sol, in fact, I am SO proud of everything he has accomplished in his six months of life. For a baby who was told he might never eat on his own, speak, hear, see, or walk, he has already defied many of the prognoses given to him – eating quite normally from both a bottle and spoon, hearing everything that goes on around him, and, though delayed, seeing things near and far. I only hope that, in talking about Sol’s stroke, others will learn that strokes do happen to anyone. I also hope that you, my dear readers, will help me raise awareness by talking about Sol, sharing his story, and educating your peers about infant stroke and its effects. I believe this will only help babies like Sol live an amazingly fulfilling life – free from judgement and full of support and love – and maybe it will even compel some to search for reasons why stroke happens to babies and change the outcome of affected babies in the future.

6 months!

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Hey Dad, I'm 6 months old!

Hey Dad, I’m 6 months old!

I had trouble getting started with and completing this post. Today is Sol’s 6 month birthday. Part of me is so excited that he’s been with us now for half a year and continues to improve and recover really well from his stroke. The other part of me hates the monthly milestones because they force me to realize how far behind Sol is from a “typically” developing child. In reality, he’s only a month or so behind, but it’s very hard for me to be ok with the delays, particularly since we don’t know how he will end up recovering. (I’m sorry for the brutal honesty and not-as-positive tone here – it’s just part of this roller coaster ride we call recovery.)

Here’s a quick update on where we are:

Medical

Just a cool dude in a fish hat

Just a cool dude in a fish hat

As you may recall, in addition to our pediatrician, we see a hematologist, a neurologist, an ophthalmologist, and a neonatalogist as a follow up from our NICU stay. We’ve found out from our most recent visit to the hematologist that Sol is not at risk for blot clotting, so another stroke is very unlikely. Whew. Our neurologist has decided that, since Sol has not had any seizures since he was in the NICU, that he can gradually outgrow his anti-seizure medication (Keppra) dose over the next 6 months, with the ultimate goal of being removed from the drug altogether when he’s a year old. She was concerned over his slow head growth and noted that while it’s likely due to extensive brain damage as a result of the stroke, we may want to do xrays of his head just to make sure his sutures have not prematurely closed and are hindering brain growth. I plan on chatting with our pediatrician next week to make sure this is necessary before moving forward. My goal is to help Sol progress as much and as quickly as possible, but I definitely don’t want to put him through any additional testing or procedures unless it absolutely has to happen.

This month we also saw a neuro-ophthalmologist who gave us a great diagnosis on Sol’s vision. Solly keeps looking around more and more each day, and is really improving his hand-eye coordination on the left side.

Therapy 

Our therapy plan is as follows: PT twice a week, OT twice a month, and Vision Therapy twice a month. In PT and OT, we are continuing to focus on getting Sol to use and strengthen his core muscles and right arm so he can learn to sit up and get ready to crawl. He can now hold a

Rattles are delicious

Rattles are delicious

supported seated position quite well, and loves it when we prop him up on an exercise ball and bounce him. In fact, he loves moving so much that one of his therapists says his theme song is “I like to move it, move it.” Sol’s arm and leg muscles are becoming more tight as a result of the stroke, so we stretch him out every day. We are also working on encouraging Sol to keep his right hand open and use it to hold toys and grab his toes. While he isn’t grabbing his feet independently, if we stretch him so his feet dangle in front of his face, he’ll grab them and put them in his mouth. This is huge progress because it means Sol’s tight muscles are getting more limber!

Vision Therapy is slightly less intensive since it’s difficult to instruct Sol how to use his eyes and vision. Instead, our therapist observes him every two weeks and notes how much he’s improving every time, especially focusing on how attentive he is to surrounding toys and faces. We’re starting to see a remarkable improvement in his ability to keep his eyes in midline, and hope this continues to improve over the next few months.

The next major milestones we have in sight are sitting independently, pushing up from his tummy to his hands and knees, and rolling from his back to his tummy.

Spinning, Spinning, Spinning

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Sol likes to move. Whether its swinging, rolling, or just being bounced up and down, it is his favorite thing. It makes him smile big, giggle loud, and get the brightest eyes, ever. Now that he’s figured out that moving is fun, he can get a little grumpy when he isn’t moving, so we find ourselves getting quite a workout keeping him moving!

Since today is a grey and rainy Friday in DC, I figured I’d post something that really makes me smile: Sol spinning and giggling with his Dad.

Happy Friday to you, and thank you so much for following our journey!