He Can Hear??

Many times when I take Isaac to an appointment I feel as though I want to inform the doctor that he is much more aware than ever of his surroundings. Sometimes I get that "yeah right" look and then other times I get a positive response. I was so impressed with the Neurologist last week when he said that we know him best as caregivers. I wanted to hug him and say "thank you, yes we do!"

Friday we saw Isaac's ENT and audiologist. Usually he doesn't pass his hearing exams with flying colors even though he seems to hear us just fine at home. Naturally he decided to take a cat nap as we started entering the room for the exam. His breathing was "too noisy" according to the audiologist to get an accurate test without interference, so she decided to do a behavioral hearing exam. This is where they put us in a room and squeak a duck or say "hi Isaac" to see how well he responds to the noise. When you have a child with special needs who is half asleep, a behavioral exam is not the best plan. She wasn't convinced that he could hear very well after that so I asked Autumn (big sister) to stand across the room and sing him the ABC song. Isaac turned his head and lit up like a Christmas tree for her. That was convincing!

(FYI..even though that was convincing, Isaac will be fitting for hearing aides at our next appointment.)

I talked to the ENT some more about the PMV valve and whether it would be safe to use with the larger trach tube. She said to go ahead and experiment with it periodically and see how he does. Yay! I was bummed out when I thought we couldn't use it anymore.

Please say a prayer for Connor's Mom. She has a sweet boy with a very rare chromosomal disorder and complex medical needs. Sound familiar? Her husband is a soldier and was recently injured in Afghanistan.

-Colleen

The Big Screen

Yep.... this is the good life!
So Isaac got a super huge TV for his room this week!! He's loving it and likes to watch it while he's getting his nebulizer treatments. The night nurses are liking it too!

We have to be selective about the videos as he can get overstimulated easily, but he LOVES Baby Einstein...it's a more calming video for him and educational. This one he is watching is about sign language.

Monday's ENT appointment was a bit disappointing as I felt as if I was talking to a totally different doctor than the one I spoke to in February. The big scope of Isaac's airway is on July the 13th, but he most likely will just come out with a larger sized trach. I asked her about the possibility of us trying to cap him periodically to see how well he can breath around it. How else would we know unless we try it, right? She put a finger over his trach for a half a minute and said that he wasn't breathing well enough around it to even try capping. So here we are......on the road to.......no-where! Oh well!

She was talking about getting hearing aides--another thing to think about. We often find it hard to believe that he has moderate hearing loss because he's so sensitive to noises. I will be talking to the doc further about this as well as his speech therapist. This is a hard decision and one more thing I really don't want to add to the plate right now.

-Colleen