We've Been Busy!

This is going to be a long one! The Husband took Monday and Tuesday off and came with me to doctor appointments. I tell ya, having him there to help soothe Isaiah and allow me to actually talk with the doctors was fabulous. Usually our doctor appointments leave me feeling like I've been through a tornado, but having The Husband there made it more like a light spring rain. I think I'm going to start arranging certain appointments so that he can come with :)

On Monday we took both boys to the developmental pediatrician (AKA, The Best Doctor In The World, AKA, TBDITW). We discussed doing IQ testing on Isaiah for the purpose of getting him on the waiting list for DDSD services, and getting him set up with a psychologist that "matches" his personality. The dev. ped. did a great job recommending our pediatrician, and I have faith that he will do a good job picking out Zay's psychologist too. He seemed to think that Zay's anxiety is as under control as we can get it, and I think he's right. Between the medicine cocktail he's on, the occupational therapy increase, and the soothing techniques we do at home I think it's covered. He still has breakthrough anxiety, but once he's pushed past whatever is causing the anxiety (separation, change of activity/scenery, etc.) he's able to calm.

On to William and TBDITW. He's going to order some genetic testing to try to figure out which Noonan Syndrome mutation Will has. Right now he has a clinical diagnosis. Years ago we tested him for the PTPN11 mutation and it was negative. At that time the PTPN11 mutation was the only one they had a test for, but now there are 3 others. The geneticist we saw a couple of years ago was sure he had Costello Syndrome instead of NS, but that test was negative too. So, we shall wait and see. I think the eyeballing method (aka clinical diagnosing) is complicated with Will because of the alcohol and drug exposure. Oh, and that's another thing. TBDITW had Will's charts from when he was a baby, and he gave us some info that we didn't have before. I just can't believe all that he has survived. The fact that he's even alive leaves me in awe some days.

So, on Tuesday we took Isaiah to the regular pediatrician for a follow up to his ER visit due to his eyeball swelling from allergies. He's never had seasonal allergies and we had no idea an eyeball could swell, so we were blindsided by that one. Grossest thing I've ever seen. Seriously. The white part of his eye swelled up over the blue part *shiver* While we were there we addressed his head (it's growing lopsided now!) and foot growth, and will be watching that more closely. His pediatrician will talk to the dev. ped. about it, but she thinks he should go back to Dallas to be followed by an ortho. There is an ortho group here in OK, but.....well, we'll be going to Dallas, unless she finds someone in Little Rock that she thinks is really good. No hurry on this though, she said to just enjoy the summer and we'll get back to it later, as long as things don't deteriorate rapidly. I appreciate that. She's also going to work on finding someone to follow his circulation/vein issues. The head surgery has changed his blood flow, and he is looking more and more like he has AOS every day. Mottling, visible veins, the banding on his toes, plus the change in foot growth....his feet have become such an issue that his balance is off when he runs, and his feet drag when he walks.

We also took Will to the endocrinologist on Tuesday. His growth rate has slowed down again, which means if we can't get him growing again at a rate that is acceptable to the insurance companies his growth hormone therapy might be suspended. Again. They upped his dosage and we have 3 months. When they first measured him he was at 46 3/4 inches, but the doc thought we could do better, so we streeeeetched him out and tried again, and got 47 1/8 inches out of him :) He has gained weight though, he's becoming a stout and muscular little guy. It does my heart good to see. He used to be so tiny and frail. Now he's tiny and sturdy!