Pediatric Stroke Awareness Month

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.

Spinning, Spinning, Spinning

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!

Happiness Is … A Happy Baby!

Spoiler alert: this post is about pure happiness. It’s a bit of a bragging post, really.

The thing is, I have the happiest baby I have ever met.

I’m not sure what I did to deserve this. Over the past week, I have seen more smiles and heard more giggles out of my kid than I would have ever dreamed we’d get. As soon as he wakes up in the morning, we go to his crib and say, “Good morning, Solly. Did you sleep well?” Big smiles. A kiss on the cheek? Big smile. A taste of the toes? Big smile. Sometimes all it takes to get a grin is getting in his line of sight.

And then there are the giggles. Oh the giggles. They are addictive. All it takes is some tickles on the tummy or multiple smooches on the cheeks, and Solly explodes into laughter. The best way to get a giggle? Naked time. Boy, does Solly like to strip down to a diaper. It is the best. thing. ever.

Miss Laura pointed out his high level of happiness to me in our PT session today. She said, “See? Any time you start to feel down about anything, just look at how happy he is.” And you know what? She was right. I had the best day today just reveling in Solly’s happiness. (It didn’t hurt that he made some big strides in therapy, too. More on that in another post!)

 

The Solly smile

Sitting in the high chair

The turtle. I eat it!

All grins

 

The Way, Way Back

I had another rough day on Thursday. After our OT suggested we start doing play dates with other babies, I started worrying about seeing “typically” developing babies and then comparing Sol to them. I know, I should never compare my baby to another, but it is so hard not to. Especially when we know that he’s going to be delayed in some areas.

After I spent a few minutes tearing up and feeling rather down, Mike sat down next to me and pulled up videos of Sol from his first month home from the NICU. He was so teeny then! In the videos, he was barely able to hold his head up in tummy time and was certainly nowhere near being able to move it in a controlled way. He couldn’t put any weight in his arms, and his eyes didn’t budge from the left side. Now, just a few months later, he’s put on a number of pounds (we’re up to 14 pounds now!), can hang out in tummy time all day long, and is starting to push up in his arms (including a little on his right, weaker arm). He’s even sitting up in a supported position and he is trying his darnedest to look all over the place. That smart hubby of mine was simply showing me that no matter what any other baby Solly’s age can do, Sol has made huge strides in his recovery and will continue to do so on his own schedule.

To celebrate how far we’ve come, I thought I’d share a few of my favorite photos of Sol’s “newborn” photo session, which were taken about a month after Sol came home. (All photos were taken by Red Turtle Photography, a fabulous family photographer located here in DC.) I’ll provide a more in depth update this week when Sol turns 5 months old!

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One, Two, Three, Four

This post is slightly overdue, but I’ve spent so much time just enjoying Sol that I haven’t had as much time to sit and write. I can’t believe our little muffin turned four months old this past week! He spent it in the best way – being loved on by his grandparents, Bebe and Gramps, and his Auntie Jenn.

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Sol loves his Bebe!

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Snoozin’ with Gramps

Unfortunately, turning 4 months old means vaccinations, so Sol had to go to visit the pediatrician. The good news is that he is continuing to gain weight and grow, even jumping percentiles in height. Mike was out of town for work, so I dragged Sol’s Bebe along with me for moral support while Sol got his shots. I didn’t need it – Sol barely let out a cry when he got two shots in his legs and he was a happy camper most of the day.

Over in therapyland, we still have many of the same goals, but we are making great progress and are adding to them. In PT, we are working on strengthening Sol’s core muscles to help with his low tone and also balance out his very strong back muscles. We’ve been doing lots of tummy time, rolling, and exercises on a medicine ball for his core muscles. He’s doing a great job of engaging his core, particularly since he’s now always bringing his hands – and toys – to his mouth. These muscles will also help him gain even more control over his head, which he is starting to hold up on his own for short periods of time. We’ve just begun working on a supported seated position, which will continue to improve as Sol gets stronger.

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Bella gives lots of tummy time encouragement

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Lights!

In OT, we’re very focused on Sol’s right hand since it is his weaker side and he naturally holds it in a fist more often than his right. To help relax his hand, we’ve started using a Mckie Splint, which encourages him to hold out his thumb, relaxing the entire hand. Once his hand is open, we encourage him to use it to hold toys, reach, grab, and stretch.

Next week, we’ll be adding Vision Therapy to the mix, twice a month. I’m happy to report that Sol’s eyes are consistently moving to midline and to the right, and he’s starting to watch faces, toys, and other movement – a really positive step!

While I’m so excited by Sol’s progress in PT and OT and with his vision over the past month, I’m feeling even more accomplished because I have learned how to sit back and enjoy my baby. Previously, I was amped up by all the therapy we need to do and focused on milestones and where Sol was – and wasn’t – that I realized I was forgetting to enjoy my time with him. This is so unfortunate because he is one stinkin’ cute baby. Now, I am taking more time just to sit and chat (ok, more like “coo”) with him, which helps me realize what an amazing and handsome little guy he is. Life is good.