hopkins

well... we survived the bi yearly visit to Johns Hopkins... but we did have a few hiccups. First is good and bad news, apparently the little guy is not eating nearly enough calories... good news he far exceeded the weight/hieght/head circumference goals... he is the size of a four year old... well duh, he fits just fine in the little mans four year old clothes. So back to eating habits... we were actually told he needed more food... don't they know/comprehend the fight we have with what we feed him now, I only call once a week stressed out over it!!! And apparently we don't feed him enough fatty food... they prescribed junk food... uhm............... what, and I've been so proud that we don't fall into the every night junk food family category. On a good note in November they are going to put him on the new drug, and then instead of counting grams of PHE, it will be grams of protein in NORMAL FOOD. The down side is that we will have many visits that month... thank heaven for grandma's who have already volunteered to watch the little man... apparently they are quite the little team. And finally the last piece of bad news... which at this point is not to be worried about until they figure out what is going on, or how to test it... he doesn't appear to have dermal pain sensors... we had noticed a few weird things, but yestreday as we were there the little man decided to throw a tatrum and flung himself into the edge of a desk... with no reaction! Hot water that is too hot for me, nothing... cold water is the same, when his brother lovely pounds on him... he laughs. So a batch of tests await him for his yearly big visit. JOY:( I guess I should be glad he is on a good growing curve my brother and I never were, and that would be bad for the little guy. Let's all just cross those fingers and hope his numbers come back okay!