Ryan had some new appts. this week. These are copied from a post I did about them – the first one is yesterday:
“Don’t know if I ever mentioned but we had a long-awaited genetics appointment today. At first, I was going to be tested for connexion 26 (an inherited hearing disorder – my dad had hearing impairment, I do, my boys do, and so does my cousin and possibly her brother). I never got the test because our insurance expired [our kids all still have insurance through Healthy Start].
Anyway, when I called about the test, to try and get it in before the insurance expired in May, they asked me more about our history, and after hearing about the boys and their autism spectrum, etc., they decided to instead test Ryan first. So we brought him in today.
He had a hard time being patient but did do some nice artwork on the board with markers!! We were able to give the dr. & assistant all our history, etc. He was supposed to have a preliminary blood test today but then he got so upset and was screaming in his stroller, so we put that part off for Monday. We were there about 1 1/2 to 2 hours already by that point.
There are more complicated tests, now, I guess, for ASD’s and other disorders, where they test different chromosomes and stuff. There may even be some syndromes that involve autism and deafness. So Tuesday we’re going back and Ryan is going to have blood test (s?) and we’ll see what they find out. [poor baby!] This will also tell us probably if my hearing loss is genetic.
They seem very interested in finding out what caused all these things to happen in our children. They also seem very knowledgeable and professional.
Eventually Chris will be tested too – he’ll have to be put to sleep for it.
Everyone knows us there too — we’re famous at the Cleveland City hospital systems…..
But it was a tiring day. It’s also emotional to think of everything that’s happened. It’s all for a reason, but it’s hard to go through it all–explaining how Chris lost his words twice, how we didn’t know he was deaf until he was 14, how Ryan’s developed mild symptoms (which breaks my heart over again) and even Colleen’s struggles with concentration.
Then we were going over all of Chris’s digestive problems he had as a young boy, and his weight gains and losses, and all the ups and downs of his health, and his skin infections etc (a lot of this is detailed early on in my blog).
I’ll keep you up to date as we get results…”
“Today was Ryan’s appt. with behavioral center. He was assessed and we were told that they WOULD find someone to come help us at home with him some, but that they couldn’t promise they could find someone that really specializes with spectrum disorder. This lady (nurse/counselor) also suggested that perhaps we pursue something like risperdol for him. Chris was on risperdol for years – it actually did wonders for him – but I just wasn’t ready to accept that Ryan actually needed anything like that. But, maybe he does… we do have TONS of behavior problems with him, and —-”