Vestibular Study

We had an opportunity to participate in a study at UAB. The Physical Therapy Dept. wants to see about the vestibular functions of children with bilateral hearing loss and see if the expensive testing gives better results vs. less expensive testing. So we had our first round of tests yesterday. I was able to provide them with two children for the study and so were several of my friends since we have more than one child with bilateral loss.

The kids had a ball. It was very interesting and kid friendly FUN! Nothing was scary, nothing hurt, and in fact the kids laughed quite a bit (so did we). Gage of course investigated all the equipment and how things worked and they were kind enough to explain all the extra details he needed (lol). Our last set of tests will be the expensive set of tests (at no cost to us) down at the University of Alabama (Nat'l Champs by the way, ahem).

So what did we find out so far? First, I'll preface by saying Gage's ENT informed us a long time ago that his ears were severely malformed inside, even his balance organ. So I did give them all of that information before attending to make sure he was a fair test subject. I told them I never even remember a time that he's ever been dizzy.

After all the tests, it's been determined that Gman does not use his vestibular system at all for balance. He uses his vision and his sense of feeling. He could still balance pretty decently as long as he had one of those, however, when we took both away (blindfold and moving floor) he had absolutely no ability to balance...he'd fall completely. Brook was able to compensate better and on the third attempt, balanced with no vision and a moving surface under her feet.

Another test I found completely interesting...when people spin around, then suddenly stop spinning, their eyes typically pulse to the side for a few seconds as if you are still spinning. This isn't something you can control, it just happens. We got to see Brook's eyes jerk back and forth via tiny camera in a pair of goggles, she thought it was funny when we went back and showed her on the screen. When Gage stopped spinning, his eyes were perfectly still. No movement! So we got confirmation, he doesn't really get dizzy. He pretty much has a non-functioning vestibular system I suppose.

We are looking forward to going to U of A in a couple of weeks. The kids got prizes for going and they too look forward to going for more testing!

I didn't hear the teacher

So yesterday, B's teacher tells me a story about something that happened in class where Brook misunderstood her. She felt horrible about the ordeal and she almost cried telling me about it but I assured her, I'd get with B and see if I can find out why she's not hearing her. She then reminded me that B's FM was out for repair. That's what it is.

When Brook got in the car she said, "Mama, I cried a little bit today. Mrs. J told me I could take a test on the computer...I thought she said in 3 minutes, but she said 30, so when I got up in 3 minutes I got in trouble. I started to cry a little bit and I told her that I couldn't hear her. Then she told me it was ok and it was fine to go ahead and take the test." I told Brooklyn that her FM should be back very soon and I know her teacher was reminded she can't hear well. Sometimes we all forget. I am just as guilty.

We work so hard to get our kids caught up that often they fit in too well. The fact that they are still deaf children gets masked by such typical performances in the classroom. No matter how well they are performing, deaf children often work much harder at listening than other kids do. That "work" becomes typical for the deaf kids and no one really knows how much "work" they are putting into just listening and trying to keep up with conversations. With any special needs, these kids might look around more often. What you might think is cheating, they are simply looking at the other kids to make sure they themselves are doing what they are supposed to be doing. What you might think is excessive talking, may actually be the kid trying to verify with a peer that they heard the instruction correctly.

I am very fortunate that Brook isn't scared of the teachers (I don't think she's scared of anyone! lol) and will self advocate when necessary. Sometimes she lets things slide with her peers that I wish she would address more but as she grows, matures, and learns that people aren't going to hate her for needing repeats, etc. I think she'll get more comfortable. I am very fortunate that my kids have such a caring group of teachers. Yes they are treated much like any other child. They forgive my kids when they make mistakes (and let's be honest, this is daily with these two! lol) and we in return forgive them when they make them. One thing is for sure, in some form or fashion, we keep them all on their toes.

Met a blogger

I forgot to mention that at our last appointment for MAPping...I met a fellow blogger. She's hilarious and I enjoy keeping up with her family here in my area.

She saw me first because my kids are insane and running around the place like wild animals. The minute she spoke I knew who she was. In fact, I thought I had met her before at the ENTs office. I kept staring at this lady who looked an awfully lot like Mrs. Hornsby from Our Blog. HOWEVER, when I finally asked here if she had a blog, she looked at me as if I had been staring at her stalking her and quickly said, "No." I didn't believe her so I further dug my own grave by saying, "Are you not from xx?" She looked at me with fear out of the corner of her eye and walked off after her kid and again said, "No."

Oh well, at least I finally met the REAL OUR BLOG star!!

Bullet Updates

HAPPY NEW YEAR

So I'm a little late on that one. Our Christmas break has ended and we are all back to work and school (thank goodness!) I have so many blogs, I'm lucky to get this one updated each week but I'm doing my best. My busiest blog or the one I spend more time on these days is The Road.

• We got report cards, Brook made A-B Honor Roll and is doing fabulous. Gage's grades have picked up, he wasn't doing ANY homework, but has gotten better. He had a couple of C's but the rest were A's and B's and he is doing really good also. In his elder state (grade 5) he's more into the social aspect of school rather than studying and concentrating on grades.
• Both kids had a good MAPping session on Tuesday. We managed to get all four ears "tuned up" and we put them in the booth. Gage drops about 25% in his ability to recognize the (adult) vocab list when background noise is added in. Brook has about a 20% drop when background noise is added with her. The Audiologist states this just confirms they still need their FMs in school. B's is out for repairs right now but she'll get it back really soon.
• Brook goes for her 8 year check up next week....whew. Who wants to help hold her down for shots (should she need any)? She is way stronger than most people and it usually takes several of us but we get the job done.
• The kids are at "that age" now. With Gage turning 11 soon and Brook being 8 year old girl, they don't really play together like they used to. This can make for some major drama at times and quite frankly I just keep them as far away from each other as possible. We cherish those days or moments when they do get along, and know that this too shall pass.
• We were filmed in attempts to help with the new video for our local HEAR Center. I assumed it would be all about the kids, and it was, but they wanted ME to talk. I was sweaty, I cried (and kept talking with tears streaming in an extremely high pitch voice! lol) But oh well, I haven't lost any sleep over it. Hopefully, it will be of some help to new families beginning their journey with children with hearing loss.