When I started running cross country in middle school, I remember learning to race uphill. My sister told me to envision a train going up each hill, and your arms were powering the engine with each swing – chugga, chugga, chugga, chugga.
This past month has felt very much like those hills, and every time I start to get tired, I think of that train and visualize pumping my arms to get up the hill.
I always like to end on a positive note, so I’ll start with the not-as-positives – those stinkin’ hills. With Sol’s 5 month birthday this week, we are starting to see some developmental delays. Nothing too surprising here – we knew the delays were just around the bend. Most of the delays are the result of his vision impairment: he still isn’t tracking consistently, doesn’t show a lot of visual engagement, is not reaching out for toys consistently, and the like. We are working with a vision therapist who is of the “wait and see” mindset, that Sol is still very young and his vision is still being wired. You may recall that we had a vision specialist come and determine that Sol likely has CVI. Our therapist isn’t convinced this is the case and thinks it could be related to motor control issues, which makes sense since his right side is the weaker side and he has trouble seeing out of the right side. I’ve also read about delayed visual maturation, which supposedly presents itself like CVI, but clears up by the end of the first year. While it’s not at the pace we’d like, Sol’s vision is slowly and continuously improving, so any of the diagnoses may apply. To help further diagnose his vision impairment, I am scheduling an appointment with a neuro-ophthamologist – for another opinion and hopefully some answers.
Sol’s growth has also slowed down. His head circumference is growing at a snail’s pace and he has not gained any weight in the last month. With the head growth, this isn’t much of a surprise considering the damage the stroke did to his brain, but we will continue to monitor the growth over the coming months. The latter may be due to a cold (his first cold!) that he picked up while traveling this month. As a result, he hasn’t been as interested in eating. We are heading to the pediatrician tomorrow to talk about colds, weight gain, and head sizes.
Ok, now the positive stuff. Sol is getting so strong! In the last week or so, he’s started controlling his head so well that we don’t need to support it as much when holding him. He now has enough strength in his trunk to stand a supported seated position for short periods of time. In tummy time, he’s pushing up on both arms (the left more so than the right) and is starting to relax and open his right hand more regularly. He continues to have good movement in all four limbs.
On the medical front, we had a follow up with hematology where he had his blood drawn, and they found his protein C and S levels to be stable. This means that we don’t need to worry about a blood clotting disorder. We will head back there in May for another round of testing to make sure that hasn’t changed. We also had a Neurology follow up, and because Sol has not had any seizures since last October, we can start letting him outgrow his seizure medication and completely wean him off of it by the time he’s one.
Most importantly, Sol is a very a smiley baby who loves to coo, laugh, and jibber jabber. We love watching him grow and make all sorts of new connections every day. Hopefully, these connections will continue and our journey will have a few less hills in it!