Just an update, just in case someone randomly runs across this thing. I am waiting for all my Deaf friends to write their stories up for me so I can make this thing work. My goal is to have a place where parents of Deaf children can come and read about the big issues ie: hearing aide's, cholchlear inplants, ASL, speech thearapy, school, the big stuff. So if they will hurry up and get their stuff done, this will become something!

Ira's Story

    Up until Ira was 6 months we thought everything was fine.  At his 6 month check-up I told the doctor I was a bit concerned because he wasn't making any of the sounds I was used to hearing at this age and I was also worried because he showed no interest in becoming mobile. The doctor wasn't worried so I didn't let it get to me, but he asked to come back at 9 months.  When we came back Ira was the same and he was very small. I was getting more concerned, so the doctor recommended PT at home with a government program. I didn't call though, because I sure he would figure it out. At the 12 month check up I was really worried, by now I was sure something was different about this little guy, he was still way little and he wasn't walking or crawling. He wasn't making any sounds that sounded like words. So I asked my Doc again and he said he thought Ira was just a really laid back kid and not to sorry too much. But that wasn't what I wanted to hear, so I went to see my Doctor. Within five minutes he said "Ira is not responding to sound, let's get his hearing tested." So I made the appt. When they ran the new born test it came back normal. But the Audiologist could see that he wasn't responding to sound so they did a booth test. In the booth test the light are low and there are two box's with stuff monkey's inside, and a light. The test goes from soft to loud. They do the test with sound and light, so sometimes a light will come on in the same place and same time as the sound and sometimes there won't be any light. So they are looking to see if the child is responding to one or the other or both. Ira only looked when the light came on. He was on my lap for the test and it was loud at the end I wanted to cry, and couldn't cover my ears because I would ruin the test if I reacted to the sound. Anyway Ira did not pass.

 Now it was time for a new test. An ABR, which is a sedated hearing test which test's the brain's reaction to sound. That was a long one, alomst two hours. Ira had a few problems, due to a bad lead in one of the machines and there was  dramatic few minutes, but things calmed down. When the test was over the Audiologist turned around and told us Ira had Severe to profound hearing loss in both ears. So to put it in perspective, if he was standing next to a plane he would be able to "hear" it but it would mostly be that he would feel it, and it would be something that would be scary for him. 

 So now to the why. We and the doctors wanted to figure out why he is not ablt to hear. So now it was up to Primary Children's Hospital. The first test was a sedated MRI to look at the auditory nerve. The nerve looked fine but they thought they saw something different with the way the brain was formed, so we went back for another day PMC, with more test and more sedation. We got there at 5 a.m. we left at 7 p.m. and we were crying. The second MRI showed that Ira had a rare brain malformation called Poly Micro Gyria, it is bilateral and paritigial. He also has a dysplastic corpus collosum and a large right ventrical. Which means: Ploy-Many, Micro=small, Gyria=folds of the brain. Bilateral =both sides of the brain, and I think paritigial is front of the brain and down the center. The corpus collosum is very small but my understanding is that it is complete..... So basically because Ira's brain is different it does not process sound. We don't know what else is or is not going on, we have to wait and see if he matures emotionally. So far so good. And we believe in him and think that he is amazing and that he can do anything and we are treating him as such, giving him every possible aveanue available to him. Which brings me to the reason for this blog. But I need to start a new entry for that.