Vestibular Study Part 2

Wednesday we travelled down to the University of Alabama in Tuscaloosa for the second and final part of the Vestibular Study the kids participated in. This time they got to ride in that special chair that could spin around and they also did something with neck muscles as well in another type of test. Very interesting stuff I must add. To top it all off, I revealed that they will each earn some ca$h for their participation, I agreed to take them to Toys R Us in the near future to spend their hard earned money. I didn't tell them at first because I wanted them to participate at will and not for the money and besides they would have asked the doctor "where's my money?"

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.

A quick run down

Here is a quick run down of all our blogs and what they are about since we have so many. We might possibly be the most blogging family I know! But we love to write and share and laugh and cry and love and have fun and.....

Brook's Blog-Buzy Beez Blog (click here) This is our newest, she's been begging for a blog for quite some time. Totally supervised she will share her thoughts, her art, her photography, etc. I do not edit her grammar or spelling but will add input at the bottom or in brackets as needed for interpretation.

Gage's Blog-He still loves to invent and create new things. He doesn't blog as often as the rest of us but he still like to show his creations to his buddies and family and anyone interested (click here)

The Road-becoming more and more popular, my spiritual blog. Nothing like feeling The Spirit and loving life both the good and bad (click here)

One Brick Shy-this is my humorous blog. I give very vivid details of my life as I make preparations to enter the world of insanity one day at a time (click here)

I have others that aren't as active-but these are my favorites. We hide very little around the Blakely household that's for sure.

Like Pigs

We decided to live like pigs today. What better way to spend an Alabama Christmas afternoon than muddin'. Some people question if the kids can wear helmets with their cochlear implants.....yes they do!

A look back

We have our HEALTH to be thankful for this Christmas! I took a look back at last year and WHEW, it made my stomach turn (click here). Gage was fighting infection from a cochlear implant surgery and Brook and I had the flu.

We have begun our Christmas break at school and don't return back until Jan 4. I am working at the accounting office for the most part and subbing very little these days but keeping super busy nonetheless.

MERRY CHRISTMAS from Cochlear Kids.

Bullet Updates

Just a few quickies from the Blakelys. We have been swamped with gatherings, fun stuff, church stuff, school trips, and who knows what else. I'm subbing less now and back at the accounting office part-time during tax season as I do often to help them out so they don't get behind during their busiest time of the year.

• Went on field trip with Brook's class. We had ordered reserved seating front and center but upon arrival, the teacher asked for our "special seats" and they were taken. Her teacher in the most fabulous advocating fashion got us our seats...because we needed them and she had pre-requested them way in advance! Thank you and the theater was more than happy to accommodate. Love it.
• B's FM system has a low static sound over the teacher's mic. I will address this at our next audiologist visit which is soon. Both kids will be MAPped over the Christmas-break holidays...whew, that will be a long day!
• Kids are doing well in school, socially and academically as far as I can tell. They have friends, they are treated well, and as equals, they have great teachers. We get two weeks off soon and are looking forward to it.
• I can't believe my baby is about to be EIGHT years old...for real! Although we've already celebrated it, she will turn eight the day after Christmas.
• She did well in the church Christmas play. She read her line perfectly and sang right along with the other children. Never would have guessed that eight years ago!!!

University of Montevallo

To some extent she's right. Implants are almost impossible to buy. They are expensive (covered by most insurances) and you need a prescription (so to speak). That was her point. She went on to write "Save your money if you can't hear!!!"

We went to our (almost) annual visit at the University of Montevallo Monday afternoon to talk to the up and coming Deaf Ed/Speech Therapy majors. The kids' former SLP is the instructor/teacher and we had a great visit.

Everyone was very respectful again this year about our choices. There's almost always some students in there that sign only and this year was no exception. We had a bonus this year and found out one of the students was wearing a cochlear implant too! Neither kid wanted to talk.......at first. Then after they warmed up, they did fine. In fact, Brook stood next to me and mocked me as I spoke...fabulous. She really liked one of the interpreters (she's often present at events we go to and I've ran into this lady for years). Brook even wrote on the board, "The lady in the green jacket likes me." Gage brought a vehicle he'd created and spoke on that subject for a little while.

I discussed our background, Goldenhar Syndrome, school, FM systems, parenting, language opportunities, AVT, ADHD, and so much more! We talked about home life and how they communicate without processors on, and the difference between bilateral and hearing with one implant.

We hope we shed some light on how "normal" yet insane at the same time, we can be. The kids got a gift card as a reward which I happily bought them prizes with on Black Friday. We look forward to hopefully returning next year. My mother even came this year with us and she kinda warmed up and spoke a little too.

Ladies and Babies

We let Brook invite some friends over yesterday to celebrate her birthday...early. Being born on December 26, she's not had a successful birthday party in like, ever. The flu, strep throat, and other nuisances have prevented her from actually having that enjoyable, wonderful, celebratory birthday that she deserves. So when I had to cancel last year's party (again) I promised the child I would let her have one...well before December!

I thought of the theme Ladies and Babies. The first thing the girls did was drop their babies in a chair and leave them there. The adults were left to babysit a pile full of plastic while the ladies, who had on everything from heels to make-up, ran...screamed...cried....squealed and ran some more! But man did they have fun! Brook loved her special cupcakes I had made for her (by a professional) and I'm enjoying the morning after...where I have cupcake and coffee for breakfast! Yum.

Some of you may be wondering, how many of her friends are hearing impaired. I can tell ya, none. She is the one one. She is treated the same by them and no one even makes a big deal about. Thank you to all the "ladies" who came out to wish B a happy (early) birthday! She had the best day and is still smiling!

Today, the kids and I (with my mother as reinforcement) will travel to the University of Montevallo to speak to the up and coming Deaf Ed & Speech Therapy majors...very exciting! Let's hope we are all on our best behavior!

What is that clicking

Gage: "Mama, I keep hearing a clicking sound in my room. I don't know what it is."

Me: "Hmm, is it the dishwasher?" (His room is adjacent to the kitchen and the dishwasher was on)

Gage: "No, it's not that." He goes back in to listen some more. "Oh, I think it's you typing on the computer." He goes back to his room and he keeps going in and out to listen. "Nope, that's not it either. What is that sound?"

Me: I enter his room and close the door, so I can listen. When I realize what it is, I look at my child, hug him and smile at my baby boy who will kill me for calling him that. I walk over to the window, raise the blinds, and open the window. He smiled from ear to ear when he realized he could hear the gentle rain falling on the dry leaves outside. Brook came in his room and he said excitedly, "Brook!! I heard the rain!!"

Now that's a sound he hasn't heard in quite a while. He must have got a real good map last week!