On Vision and HBOT

For those of you who have been following our blog since the beginning, you might remember my constant worry over Solly’s vision. Sol was born with his eyes somewhat stuck looking towards the left. A part of the initial prognosis given was that he could be blind. (Note to Mom’s new to a pediatric stroke diagnosis: take the first prognosis, however grim it may be, and consider it only a possible outcome. Your child CAN and most likely WILL do much more than doctors believe he or she will after a stroke.) Even after rigorous vision therapy, we still got diagnoses – from several different doctors, many giving conflicting thoughts – of delayed visual maturation, CVI (cortical vision impairment), strabismus, nystagmus, possible visual field cut, possible double vision, and so on. With all these possible diagnoses swirling around us, even though it seemed that Solly was compensating well for whatever vision issues he had, we couldn’t be sure how well he was seeing. It was always a point of major frustration.

With hyperbaric oxygen therapy (HBOT), we had read of many children having improved vision after a full course of treatment. In our own experience, we saw many instances where Solly was interacting with his surrounding environment in ways we’ve never seen before, thinking that maybe it helped his vision and helped his brain make new connections as a result. But whenever we think Solly is interacting in new ways, we question IF he is and WHAT, if anything, helped his brain make those connections. We try so many things that we can’t always be sure what move was the right one.

However, after an appointment with Sol’s developmental optometrist earlier this week, we are no longer questioning these new connections: HBOT did, in fact, help Solly’s vision.

Amusing ourselves at an early morning optometry appointment

This past October, at our last appointment with our optometrist, he ran a test on Sol where he set up sensors on his head and had Solly watch a series of images flash on a screen. The sensors provided data into what Solly was seeing and how well his brain was processing the images. We were delighted when the results came back as “within normal limits.”

This week, we saw the same doctor for the first time since October and he ran the same test. After he examined Solly’s eyes, he told me that his vision had improved even more in the past 8 months. He asked if we’d been working hard on our home vision therapy exercises. I said, no, we simply just try to expose Solly to as many new environments as we can, but that we’d also done a full treatment of HBOT and thought that had a great impact on his vision. His optometrist not only agreed that HBOT had helped but he also encouraged us to do another round of treatment as our schedules allowed. We will continue to be followed by Solly’s optometrist every 6 months, but right now, no need to worry about glasses, patching, or surgery at this point. 

We’ll count this news as one big win for HBOT!

Seeing Red

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:


Cortical Vision Impairment

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!

Cheer Up, Buttercup

Worrying does not take away tomorrow’s troubles,

it takes away today’s peace.

Over the past two weeks, I have become my own worst enemy. When we first received Sol’s diagnosis in the Fall, I envisioned him overcoming his injuries and defying all odds. Lately, I’ve been drowning in “what if’s” and seeing only the worse case scenario. That girl who proudly declared there is no normal is gone. My positive attitude has waivered, and instead of focusing on Sol’s many milestones, I’ve focused only on the unknown. The unknown is a pit of despair.

Here’s what’s running through my head lately:

  • The pediatric ophthamologist referred us to a specialist because Sol’s left gaze could be caused by CVI. In my mind, that meant he definitely had CVI and would never be able to see normally. (We see the specialist today next Friday and a diagnosis of CVI doesn’t necessary mean that he’ll never be able to see.)
  • The neonatalogist measured his head circumference and found that his head size is just in the 1 percentile for his age. To my neurotic self, that means he must have microcephaly and his head will never grow. (His neonatalogist is not concerned with his head size. His head is, in fact, growing. Plus, his weight is only in the 10th percentile, so he’s pretty proportionate.)
  • His foot twitched once while napping on my lap. Clearly, it was a breakthrough seizure.

The scary thing is that we don’t know what’s going to happen, and to make matters worse, there’s this thing called the Internet that allows you to search diagnoses and outcomes to no end. Those Facebook support groups that are helpful when you have a question end up being just as bad as Google because you see one good outcome or one awful outcome, and you assume the same thing will happen to your child. We don’t know if Sol will be able to sit up on his own, walk, see, talk, or go to school. We don’t know if he’ll receive a diagnosis of cerebral palsy, epilepsy, ADHD, or any of the other issues that commonly arise after a stroke. The uncertainty really sucks.

Sometimes it’s hard to keep faith and trust that everything will be ok. The thing that keeps me going in dark times like these is how far Sol has already come in just 3 months, considering his outcome really didn’t look good in the first few days of his life. He also has shown us that he inherited a bit of his parents’ stubbornness, like when he started chugging down bottles after the speech therapist strongly hinted that he would need a feeding tube. My hope is that his strong-willed nature continues to shine, and that when ever a doctor says he can’t do something, he turns around and says to them, “Oh yeah? Well, watch this!”