The docs in Boston plot Dean's weight on the WHO growth charts. Last night, I was looking through the most recent write up I have from some of the docs in Boston and saw percentiles for Dean's weight. On May 9th, he was 12lbs 3.4 ounces which put him in the .04 percentile.
He's now just over 13lbs (13lbs 3ozs). He does appear to be gaining weight on "his own curve" which is good because there was a period of 6 weeks or so when he wasn't gaining any weight.
I just found this a bit crazy.
We were in Boston yesterday for a very long day of visits. I took my 4 year old with me and that didn't go as badly as I thought it might. She was rather well behaved; she only wanted to show off a few times (thanks to my kindle fire, netflix and free hospital wifi!!!).
They are generally pleased with Dean's progress. As stated above, he is growing on his own little curve (which, for the most part, parallels the normal growth curve) but he is growing. They aren't sure that he is small because he has Barth's or just because he is small (older sister was in the 1st percentile for weight when she was younger).
Ive had the home nutritionist come out three times now. Each time I thought that she was useless, each time was just a waste of time for the both of us. I think I might just tell her to not come next time. She told me that I should blend my own baby food because it tastes better (and he'd like it more) than store bought baby food. I cringed at that. I don't know if Dean will have dietary restrictions due to his heart condition. So I told her: "I'm not sure how to go about deciding what to blend" and she went on about how I could do just about anything- fruit in water or fruit juice (no corn syrup) or vegetables- no sodium added. I got the vibe that it should have been a no brainier...but it isn't!! Nothing about this child is like the other three!! So, I brought this conversation up to the nutritionist in Boston. She told me that blending my own baby food was ridiculous. She said I had enough to do and she relieved me of that suggestion and said that store bought baby food was fine. Barth babies just don't really want to eat, and Dean is going through an independent phase (I now have to trick him to eat purées, he eats those Gerber puffs wit such enthusiasm tho! I LOVE those!) and that he was doing well. She said that there usually isn't diet restrictions on Barth babies, but that I will need to add fat whenever I can. We had to do this with Regan as well when she was 2: no margarine, have to make his food with butter. Not just crackers-crackers with butter. And cheese, cheese is good. She suggested I start (high fat) yogurt in the next month. Nothing with chunks. Babies are picky, don't like chunks.
I will write more later, I think. That was the big part of the Boston day. The only other significant event was the lack of abnormal stress when he got his blood drawn. That was nice. :)
