Good News

Jerry's echo showed that his heart is about the same as last time. The squeeze is in the normal range but there is still some trouble with the relaxing part (this will be there for the long term or forever). This should not be impacting him as far as the doctor can tell. It was such a relief!! His weight on this scale was only 18 pounds and 5 oz or something like that. It has got to be wrong since mine and the one at the pediatrician's would both say a little over 19. Even at that weight, the cardiologist is concerned that he is not gaining faster and wants us to return to the GI doc. I really just think it is going to take time. He is VERY active and is really just starting to hedge toward normal eating. However, he does really decrease his drinking so much when he does eat that the total calories is still pretty poor. I think he only had 11 oz today!! That is really bad since he didn't eat great (not much opportunity) until a bowl of noodles for dinner. We see the pediatrician next week for JJ's 18 month appointment and will see what the scale says then and look further. Shots next week too...maybe 4 or 5 of them!

Jerry was pretty upset during all examination today but luckily calmed down watching Barney during the echo. It is hard to see him so upset and having to go through this anxiety. There is no doubt that he remembers all the pain from other experiences and just isn't sure what to expect. He remembers where to go to see the fish we visit CCMH. I couldn't believe today he said fish and started walking, new what hall to turn down. Anyways, I know that none of the exams are hurting him and feel OK just comforting him and telling him it is just the way it is for him right now. As I have heard a few other stories of ALCAPA and knowing all of the risks there were for surgery, we really have fared pretty well and are thankful for that. I hope to teach Jerry this too as he grows older.