Friday, May 13, 2011

Just Another Bump in the Road

Because of those with Down syndrome who have come before us, we know to get our kids tested early and often for things like hearing loss, vision problems, thyroid function, etc. As such I choose to be grateful that we know about Sophie's hearing loss at such a young age.

Sophie recently went under general anesthesia for an Audio Brainstem Response (ABR) and was diagnosed with conductive hearing loss. Her loss is moderate in the lower tones and mild in the conversational levels. Her left ear is slightly worse than her right. This means that she can hear, but sounds are somewhat muffled. She is not likely hearing words clearly which may help explain her delayed speech.

A conductive loss is a problem in the ear vs. a problem with the brain receiving the information. This could be a problem with the three little bones that conduct hearing, fluid (she has tubes & dry ears), or the fact that she (like many with Ds) has super tiny ear canals. These will not be corrected with surgery or growing up, meaning it is likely permanent. She is scheduled for another behavioral test to tweak the results for hearing aids and a CAT scan to rule out mechanical problems that can be corrected. After this she will have ear molds made and begin using hearing aids. Does anyone have experience in keeping young children from removing or chewing hearing aids? We're also finally getting her some suresteps orthotics.

Sophie's yearly IEP was this week and after 2 hours and 47 minutes, we agreed to the supports and services she will need, including 60 weekly minutes each of PT, OT, ST, and an itinerant teacher. For 4 weeks this summer the therapies will be at home. Starting this fall she will go to a typical neighborhood preschool and receive her therapies there. Next we will take her IEP to her new school district (due to our move) and make sure it is enforced.

Now, I'm off to research swing sets and plan Helena's 2nd birthday (May 16th). Can you believe it? I've got a new house to put together and beautiful weather to enjoy. Hug your family and love - better. Happy weekend everyone!

Here's a sneak peak at 1 of many painting projects we're working on. I wrote love notes on the girls' bedroom wall before covering it up with more paint.


Becca said...

Ah, wow, I'm sorry to hear about her hearing loss, but your perspective is excellent to see how good it is to identify it now rather than later... Sounds like you've got an excellent plan in place.

I love the wall in the girls' room!! Too bad you're going to cover it up with paint, though... :-)

RK said...

As always, girl, you're on top of things, and your little chickadee will benefit from being in your care once again. I'm sure this is not the most fun you've had, but you are MORE than up to the challenge.

I hope you get clear answers from the remaining tests and that Miss Soph-a-cute-loph is hearing loud and clear very soon!

Simply, Sarah said...

Toupee or wig tape is double-sided, but not like regular scotch tape. We bought a big package from a hair salon for about $5, and cut them to fit the back of the aid. Didn't work all the time because Anthony's so stubborn, and now he doesn't use an aid. But, it is better than anything else we found.