So many questions...

We've been through a long journey with our boys already, and so far to go.

Last week someone asked me how I felt when our first son was diagnosed as severely/profoundly deaf. "Were you devestated? Did you cry? How did you feel?" "Yes, Yes and I was in shock." Well, we've answered many questions over the years, but this one got me thinking. I have never written down how I actually felt, what we've been though with our boys. I've finally decided to do so, not only to help us document our "adventures", but also to share our trip with others. I remember feeling very alone when we first found out our son was deaf. I didn't know any other deaf folks. There wasn't much information on the web at that time, either.

I'm probably going to side track a bit, I'll try to start posts from the beginning. But a very quick overview first.

Our first son, Matt, was dianosed deaf when I was pregnant with our second son, Chris. Chris can hear very well, chooses not to listen on a regular basis. :) We have since had a third son, Josh, who was diagnosed deaf at birth. Matt and Josh have tested positive for Pendred Syndrome, both have bilateral Mondini dysplasia (in their cases 1.5 turns of the cochlea vs. 2.25 turns) and Enlarged Vestibular Aqueduct systems. Pardon me if I get terms wrong at times, I'm a Mommy, not a Doctor.

Matt was diagnosed deaf at 25 months old, benefitted from hearing aids for a brief time, then was implanted with the Advanced Bionics CII implant at 39 months. He is now almost seven years old. He used sign language in the beginning, but has always been strongly oral. He has upgraded to the HiRes programming with his CII implant, fully mainstreamed in first grade with the help of a Phonak Microlink FM system, and never stops talking, ha ha!

Josh was diagnosed deaf at birth, fitted with hearing aids at one month old. He had a nasty series of ear infections, undiagnosed for who knows how long. These even affected his balance. Finally he had tubes at 14 months old, immediate improvement! We waited until the end of cold/ear infection season for his implantation, he received his Advanced Bionics 90K implant (HiRes programming) at 16 months old. He is 15 months post activation, very good receptive abilities, still working on expressive language. While he is using sign language, we work very strongly on his aural/oral skills, too. He is now using word approximations, but needs to work on his oral muscle tone, motor skills, etc.

Well, that's the overview. I'll try to answer the first question in my next post, "How did you feel when you found out your son was deaf?" Right now I have to get that very boy off to school! :)