Nolan continues to do well. We always hear “he looks great” when we visit one of his many doctors. His growth is catching up but still not what his endocrinologist is wanting so we may be looking at growth hormone therapy in the future. The doc also mentioned the probability of an MRI to look at his pituitary (before he turns three), he said it was his hunch he would need one but then said “I could be wrong”, so once again it is up to Nolan. We are also looking at a surgery in March to fix his hypospadia. He has the most severe form of it which sometimes takes multiple surgeries though no one has said this to us (I read it on the internet). So, in the spring we may be sending out a “good vibes” call once again.
Nolan has begun eating some solid foods. He chowed down on some baked chicken I was kind enough to share with him and he seems to really like cheddar cheese. Sometimes he will pick things up himself, more often he wants me to put it in his mouth. So I get torn between him getting the calories (gaining weight and being able to get off the G-tube) and knowing he needs to learn to finger feed; So far I have mostly given in to feeding him.
He is learning to pull up and to stand while holding onto something. He is very good at the standing part and does well with holding on. We are trying to teach him what happens when you let go without him cracking his head open… Randa, his physical therapist is working with him on the transition between sitting and standing which he seems to be picking up but still needs a lot of support.
In general he is a real firecracker and can hardly sit still now. I think all his energy will help him be motivated to figure out how to get from place to place and to build up the strength to do so on his own. He is generally good natured, always ready to laugh or at least smile. He takes a few minutes to warm up to visitors but once he feels comfortable he will put on a show!
Speaking of which for those of you who haven’t found out, if you go to his photos (the most recent ones, I forget the title of them) and click on the one where the photographer was shooting down on him and he is looking up, sitting in a chair, a video will play. Maria put together the video from various times she was over, it is not too long and has some great moments. I like watching it and I get to see him every day!
Ok everyone. Take care of yourselves and once again (and again, and again) thanks so much for all the support over the last year plus. I know all that love had a hand in his amazing recovery not to mention how much it helped us .