Hello everyone! Sorry for not posting much sooner, but these boys keep me BUSY!
There’s so much great news to share, I don’t even know where to start!
We saw neurology in December, who told us that his EEG (and the suspected seizure episodes) were all normal and that there was in fact NO seizure activity!! She said there was tons of normal brain activity, and gave us a weaning protocol for his meds. So far he seems to be doing OK with it, aside from a few night terrors which can be common. We should be completely off medication by his birthday. What a gift! We follow-up again in April.
We also saw the developmental follow-up clinic in December, and Charlie is perfectly average height and weight, hovering around the 50% for both. His head size is on track there also. They were sufficiently impressed with his crawling, sitting, eating, and social abilities. I’m still waiting on their official report from this visit, but I’m sure it will be great news. We see them again in May for his 1-year follow-up and will be redoing his hearing test then also.
Charlie is quite a chatterbox, and loves to say “ma-ma” as he follows me around the house. He’s also taken to saying “pa, pa” as he claps his hands for patty-cake. He might not have a lot of words (and something tells me he might not, ever) but he has no problems understanding what you tell him!
He’s also become quite the little walking man with his lion walker gift from grandpa for Christmas, and is even doing the “side shuffle” with no support! Not to mention a few forward shuffle steps unassisted — I’m sure he’ll be completely walking (and running) in no time at all.
We’re struggling lately with getting Charlie to swallow foods and liquids, and as such he deals with constipation a fair bit, which is not uncommon in kids with HIE. It can be stressful at times, especially since he was such a great eater before. I’m planning to follow up with his pediatrician when we see her next week, since he wasn’t doing this when we saw the development clinic in December. He still nurses like crazy though, which is good.
Charlie is really becoming quite the little man the last couple of months — with the most inquisitive mind and infectious laugh. He loves exploring the world around him and interacting with anyone within reach.
Hope everyone is well. Much love and continued thanks for all your support and well-wishes! ❤