First we saw our Neurosurgeon for the shunt surgery follow up. I always love seeing her and she was very excited to see Lucas looking so healthy. Every time she'd stand him on her lap to examine him, he'd start jumping and smiling... this is his newest thing. He no longer will stand for us longer than a second -- its instant jumping! :-) She said she couldn't be more pleased with his progress. We did not do a CT scan that day to check for any more brain expansion, we will do one in September (we have to spread them out due to the risk of receiving too much radiation). That day we decided to go up to see our old friends in the NICU. We got to see his nurse, Jackie, and several others.
We saw the Neurologist next (Dr. Chang). She was Ms. Negative last year and the one I dreaded seeing in our family meetings. She hasn't seen him since all the seizure meds and the aftermath of the surgery in March... she was also very excited with his whole demeanor. The first thing she noticed was his vision and how much she could tell it had improved, as he looked up when she walked in the room (remember, he was seeing nothing after the surgery). She kept saying over and over, "I wouldn't have predicted this! He looks SO good and look at all the things he is doing!" She said "he looks so normal!" Now, from anyone else I would have been offended by this comment... but coming from her and our history together, I know she meant it as the utmost compliment. She said he's lost that "preemie" imbalanced look and now like a normal, healthy, little boy. :-) He was in a good mood for that appointment too, so lots of smiles and interactions -- she didn't have to say much to him at all and he'd flash her a smile. She claimed he's developmentally around 6 months, and due to how sick he was, she wouldn't expect him to be any further now. She's finally the first person that has ever said that, it feels like everyone else says "he's not doing xx, he should be here." She confirmed he was much further along on the social side though (9-10 months)... we could have predicted that! Our little ham.
When we wrapped up she said "this is why I just never know about these kids, I just can't tell you what the brain is going to do, and sometimes they really surprise me... Lucas has been one of them that is surprising me." She asked me to email her the day we do the CT scan with the Neurosurgeon in September because she really wants to see right away what the expansion looks like now. I'm trying not to get my hopes up (as there is still that fine line between being optimistic and realistic), but I'm so encouraged by this visit! When I got out of that one, I couldn't call Bran fast enough to give him the good news. The last one -- GI -- I finally was able to breathe a sigh of relief. After being the Calorie Nazi the last two months and obsessed with him getting enough ounces, she said she was very pleased. He has slowed down a little on weight gain, but is still following the curve (his own curve, of course). I've been paranoid since she told me she was considering making us put the NG tube into his stomach every night, and especially because his intake has really slowed down lately and he wasn't anywhere near the minimums she set for him. But somehow, he's gaining enough weight even on the low volume he's eating to satisfy her. Whew! He's up to 18 pounds now (should be around 22-25) but hey, that's a looooooong way from one pound!
So, what else is he doing now? Blowing raspberries, jumping, rolling over from tummy to back, and full-on belly giggles!! There's nothing better than hearing that laugh! And we got our first toother this past week, and the second one is not far behind it! Our little guy is growing up! ...More in a few weeks!
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