Tag: Infant Stroke

Happiness Is … A Happy Baby!

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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

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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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Giggles Abound!

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Two nights ago, Mike and I were undressing Sol for his bath, and we heard it. Sol’s first giggle. He loves getting naked and always gives us a monster grin when we undress him, but the extra giggle, it just made our day. We’ve had a few more since then, usually while undressing or tickling him, and let me tell you – it is the most awesome sound ever!

Over the past two weeks, we’ve had a packed schedule. Five therapy sessions and three doctor’s appointments (one for me) made for a very tired Sol and Mama. In addition to his appointment with the vision specialist, Sol had a follow up with hematology. They had to draw blood to check his protein c and s levels to make sure that his stroke wasn’t caused by a clotting disorder. We should hear the results within the next couple of weeks, but I’m hopeful that we can cross hematology off our list of follow ups within the next few months.

We’ve got quite a few appointments next week – Physical Therapy – twice!, Occupational Therapy, a planning meeting for Vision Therapy, and his four-month check up at his pediatrician (including shots, ouch!). For now, we’re going to enjoy a weekend where the quiet is interrupted only by smiles and giggles.

Working that tummy time:
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Boy & dog:
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Sleepy time:
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Seeing Red

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Despite what the title might suggest, this post isn’t about anger. It’s about seeing. Actual vision. Seeing red things.

Today, Dr. Newcomb with the University of Maryland’s Connections Beyond Sight and Sound came to our house to evaluate Sol’s functional vision. To be honest, I’ve been so nervous about this appointment and had a hard time sleeping last night. I think after going through an experience in the NICU like we did, I will always worry when new things could possibly pop up with Sol. While I’ve been anticipating and coming to terms with his possible vision impairment, I still felt very uneasy as this appointment approached.

The good news: Solly can see. And he’s eager to see. “Visually curious” is how Dr. Newcomb put it. Sol was napping when Dr. Newcomb arrived, so we sat down and I filled her in on Sol’s background. I let her know that while his eyes have always preferred the left side, more and more we’re seeing them dart around in all directions. He doesn’t focus on anything for very long and he rarely tracks, but sometimes we think he looks at his toys or the dogs, and he is definitely reaching for toys. She said that based on his background (the stroke) and some of his tendencies (not focusing, left-sided gaze), he is a likely candidate for CVI. At this point, since he’s only 3 months old, it’s too early to tell the degree of the CVI. We’ll have a formal evaluation when he’s 6 months old to understand its severity. However, there are some things we can do now to help his seemingly improving vision.

Once Sol woke up from his nap, we took him downstairs where there is less natural light and showed him the toys he typically plays with. Dr. Newcomb simply observed while he reached for his rattles and looked around the room. She then pulled out some “toys” from her bag – items that kiddos with CVI tend to respond to: red tube lighting, pom poms in red and yellow, and mylar paper in, you guessed it, red and yellow. (I mentioned in my last post that CVI kids can see reds and yellows best.) And, boy, did he respond. He gazed at each item and cooed, especially at the lights. She presented the items to his left side, which is where we saw the most engagement. She then presented them to his right side and he tried so hard to move his head and look at them. When I adjusted his head to look to the right, he had a much easier time shifting his eyes to the right to look at each object. It was so encouraging hearing Dr. Newcomb confirm that he was, in fact, able to see and look at each item. Not only that, but there is an actionable plan to help our “visually curious” baby improve his vision over time.

Our homework: We are to incorporate objects that Sol looks at into our daily routines so he has practice seeing throughout the day. Using his vision takes a lot out of him so, unlike physical and occupational therapy, we’ll help improve his vision more if we don’t set aside dedicated time to practice it. We also need to present these objects against a simple background. For kids with CVI, looking at objects against a patterned background makes it look like a “Where’s Waldo” illustration: it’s hard for them to focus on one object at a time. As his vision improves, we’ll be able to incorporate more objects and more patterns.

Next steps: Dr. Newcomb is going to prepare a report of Sol’s evaluation for us to share with our team of therapists so they can incorporate visual techniques into sessions where vision is super important, like tummy time and practicing reaching with his right hand. Then, when he turns 6 months old, we’ll meet with Dr. Newcomb again for a formal CVI evaluation against set criteria, where each criteria is on a scale from 0 (not able to see) to 10 (normal vision). We’ll then work to get each criteria to 10.

I am relieved this appointment went so well. Dr. Newcomb mentioned that early intervention with vision is important and usually has great results, particularly for kids that are eager to learn to use their eyesight (like Sol!). She’s worked with many children who are now in mainstream school and can see and read just like their peers. Based on Sol’s improvements with his vision already, we can only hope and strive for him to have great results.

(If you’re interested in learning more about CVI, I’ve listed some articles and websites on the Resources page and will continue to add to it as we continue our journey.)

This seeing thing is tiring stuff:

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Cortical Vision Impairment

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After having a rough couple of weeks, over the weekend, I hunkered down and read a book on Cortical Vision Impairment (CVI), which is something that could be affecting Sol’s vision. The book is called Little Bear Sees, and is written by the parents and grandparent of a little boy who is learning to live with CVI.

As opposed to many of the articles that I’d read online, this account of CVI was mostly positive, filling me with hope and ideas for a plan of action (a little b-school nerdiness) should Sol be diagnosed with CVI.

Here are a few points that stood out to me:

  • CVI has absolutely nothing to do with the eyes, so glasses nor surgery will not help it.
  • Because CVI refers to how the brain processes images taken by the eyes, the brain can be rewired or trained to better understand those images. (heck, yeah, neuroplasticity!)
  • Kiddos with CVI tend to see specific, highly saturated colors best (reds and yellows are common), can see familiar items better, and see in a simple environment best.
  • Rather than designating specific blocks of time for vision therapy, it is best to incorporate ways for babies to see throughout a daily routine so they can have lots of practice.
  • CVI can be corrected to “near normal” vision, and typically is done so within 2 1/2 years. It is much quicker for infants’ brains to be rewired rather than older kids and adults because of – you guessed it! – neuroplasticity.

All in, a super helpful read in preparing myself for what may be just around the bend. For anyone dealing with CVI, I recommend checking it out along with the Little Bear Sees website. For my family members or friends who may want to read it to better understand our approach with Sol should he receive the diagnosis, shoot me an email and I can loan it to you!