Who Ya Gonna Call?

Ok, so when the developmental pediatrician said "ectodermal dysplasia" I thought "Ghost Busters!". It was 11:30am and it had already been a long day.

So we now know why Isaiah doesn't sweat very much, in fact it's just his head that sweats and I can count the number of times I've seen him sweaty on one hand. It also helps explain what is happening to his feet. The good news is that his feet have grown in length and flattened out some, making shoe buying a lot easier. The bad news is that the skin on his toes has started breaking down like the scar tissue on his scalp used to, which makes shoe wearing a lot more difficult. I'm thinking moccasins this fall. As for the not sweating thing, well we'll just have to be careful, there isn't much else to be done. I just hope if the time comes that he wants to play sports he chooses something he can do in the air conditioning....like bowling.

It's almost time to start another school year and we are no closer to having a school, public or private, within a reasonable driving distance that will work for Isaiah or William. So we will continue to homeschool. William progresses nicely, if very slowly. Once something is in his head it stays. Isaiah...not so much. He can tell you his name correctly 10 times out of 10 and his age correctly probably 8 times out of 10 (subject to change upon his next birthday). Colors are hit and miss, shapes are totally miss, as are letters and numbers. We're working to help him recognize his name with the hopes that he will eventually be able to put the letters in order himself and then write it. His occupational therapists are fantastic and help us come up with new ideas to help him remember.

The human brain fascinates me. It is resilient beyond belief, and even when it's been pickled in illegal substances during formation it works so hard to make up for the "holes" it has. With William the holes are finite, when we find them we can work around them and progress is possible. With Isaiah they seem to move around, making things much more challenging for him.

Isaiah will be 7 very soon. Seven has always seemed like a turning point to me. It's when you start leaving behind the "baby" stuff and start becoming a big kid. It won't work that way for Isaiah. For him the turning point is that his challenges are becoming more apparent to other kids his own age. Soon his social inappropriateness won't be met with knowing smiles from other mothers who know how kids can be. Soon other kids will really start to notice that this very tall 7 year old is very different from them.

I feel sad that he faces these struggles, but he is who he is and who he's always been. He's a very sweet, unique and fun kid, and he has some really great siblings :)