Saturday, August 16, 2008

Cochlear Implant Update

Thursday was supposed to be our "parents" psychologist evaluation for Evan's CI candidacy. Unfortunately, we were a little bit confused--Jeremy thought this was the appointment the psychologist would be evaluating Evan, and he also thought there was a second appointment at 9 am. It turned out, Evan was only scheduled for one appointment (at 3 pm!). Luckily, the psychologist was flexible and able to see Jeremy in the morning.

So only one parent was available to be evaluated. I felt bad, because I did want to be there. But even if I had known, I probably would not have been able to take time off work (it's been a slow summer, and I can't afford to lose any cash flow by rescheduling patients). I hate having to make that choice, but I guess someone--whoever chooses to work outside the home--always has to make it.

I think our expectations are reasonable. The joke between Jeremy and I is that we would consider the CI a failure if it didn't cure Evan's CHARGE Syndrome. All joking aside, we understand Evan is really Deaf-plus. And we know the "plus" part complicates the outcome. Even a little improvement, if he could just hear some enviornmental sounds, we hope would benefit him.

One decision that was made at the psychologist evaluation was to postpone Evan's psychologist eval and meeting with the surgeon until after the MRI and BAER under anesthesia are obtained. This was going to be September 23rd, but will probably be sometime in October now. Evan's AWESOME urology surgeon, Dr. Lendvay, agreed that both these tests should be done under the same general anesthesia as the urology surgery (to minimize the number of times Evan has to "go under"). The bad news was the surgery has to be pushed back until Dr. Lendvay has a big enough opening in his OR schedule. So we won't have any more CI candidacy appointments until later this fall.

3 comments:

Val said...

Hi, my son Gage was at one time diagnosed w/CHARGE...until last year when they removed that diagnosis and put him under Goldenhar Syndrome which seemed to be a better fit. Evan's a trooper for sure!

amy and mighty max said...

thinking of you...sorry about the delay. i know you are eager to move forward.

elizabeth said...

I think you have a really great perspective on what "success" with a CI really means. It is so individual for each child, each family. As long as you know yourself and your son, your expectations will be right on target for where you need to be right now. Even a little hearing can mean a LOT to a child in a world of silence. Best wishes as you continue the candidacy process!