A popular result for Evan, Monday's behavioral test in the booth was once again inconclusive. He cried the whole time.
He is scheduled for a repeat try in another week or so. Jeremy is going to try bringing a booster seat from home for him to sit in (he had to sit in one of those restraunt-style highchairs, which aren't very supportive). The audiologist will also defer looking inside his ears until after the test next time--this never fails to elicit a good rise out of Evan, and it's hard to calm him down after.
Plan B is to obtain a BAER with Evan's hearing aids and also with a bone conduction aid. This would be done while he is under general anesthetic, at the same time as the MRI and urology surgery. An "aided" BAER is not routeinly done, but it would be some kind of baseline to have in the event we never get a conclusive behavioral test.
I wish there was a way to make Evan understand the "hows" and the "whys" of these tests. But if we could communicate that to him, we probably wouldn't be considering a CI in the first place...
What is CHARGE???
CHARGE syndrome is a recognizable (genetic) pattern of birth defects which occurs in about one in every 9-10,000 births worldwide. It is an extremely complex syndrome, involving extensive medical and physical difficulties that differ from child to child. The vast majority of the time, there is no history of CHARGE syndrome or any other similar conditions in the family. Babies with CHARGE syndrome are often born with life-threatening birth defects, including complex heart defects and breathing problems. They spend many months in the hospital and undergo many surgeries and other treatments. Swallowing and breathing problems make life difficult even when they come home. Most have hearing loss, vision loss, and balance problems which delay their development and communication. All are likely to require medical and educational intervention for many years. Despite these seemingly insurmountable obstacles, children with CHARGE syndrome often far surpass their medical, physical, educational, and social expectations.
6 comments:
Ugh- booth tests can be so hard when they're little! Our audiologist has me hold Nolan on my lap and she sits knee-to-knee with me, reading his responses (a second audi is in the control room). I'm glad they can do a BAER with his aids on- you can get reliable results!
hang in there!!! DS is 8 yo (implanted for 7 years).. and because of other issues, the aud is always an 'event' and we are never quite sure how DS will be... i feel your pain! we used to leave our house extra early so DS could nap in car...then we'd scoot him in there when he woke and do snack in the booth..or mapping.
We had to go throught he same thing with hearing test for Caleb to the point they did a brain stem activation under general anethesia, so we can understand what you are going through. Poor little guys, they just don't understand yet :)
God Bless,
Brian, Sarah, and Caleb Hlebiczki
I know what you mean. We don't have great luck with the booth tests either. The one time Luke cooperated really well, he was sitting in a cube chair. We liked that cube chair so much that I got one for him after that. Works great cause it's not too confining, yet the high back and arms make him feel supported. Good luck with your next test.
still trying to figure out Lucas's baseline as well, I think inconclusive is a standard with CHARGE.
I'm sorry! That has to be frustrating for all of you.
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