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:
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.
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
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.