Bilateral Vestibular Hypofunction

I finally got around to reading the final reports sent from UAB from that study my kids participated in for kids with hearing loss to test their vestibular (balance) system. Here's what was determined: they both have Bilateral Vestibular Hypofunction. Gage is a little more severe as expected and Brook can compensate with some of her issues. For example, she can figure out how to balance and an unlevel floor when she can't hear or see....poor Gage however, falls completely over, can't balance at all. She knows how to use her sense of feeling to adjust her balance, Gman falls back without any chance of staying on his feet. They suggested the kids take Karate, and stated Gman might improve with swimming or tennis while Brook could benefit from Dance or Gymnastics. We actually have thought about putting them in Karate anyway, so might actually look into that! Here's the post from when they did the study last year, with pics of what all they did.

Here was the quote about B's test:

"OVERALL IMPRESSION:


 Brooklyn has bilateral vestibular hypofunction. However, she has learned to use remaining vestibular function for gaze stability. She has not learned to compensate for balance."

Gage's test result quote

"OVERALL IMPRESSION:

 The results of this study show that Gage has bilateral vestibular hypofunction which contributes to his inability to see when his head is moving quickly. It also contributes to his inability to balance when his eyes are closed or when the surface is not stable. Try some of the following exercises to help this problem.

Gaze Stability:

Work on focusing on small letters or pictures while turning your head quickly (e.g. walking, running, or swinging). Try to focus your eyes anytime your head is moving. You can even turn your head side to side while trying to read a book (for a minute or so).

Balance:

Work on standing on soft surfaces (thick couch cushion or foam mat) with the eyes closed; work on standing on one foot with eyes opened and closed (try to get up to 30 seconds); work on walking tandem (one foot in front of the other)."

Good stuff and informative from UAB! Thanks for inviting us to participate!

The joys of Goldenhar

According to the latest data (collected by me today) Brooklyn has 24 teeth, which is probably normal, she is now nine years old. Gage on the other hand has a total of 19. There are a couple of more that will likely come through but at this point I don't see past 21 teeth in his near future and the ones he does have, aren't actually full healthy teeth. They are called pegs. Despite his wishes to be able to go to the dentist and just walk out with a cleaning, that simply doesn't happen for him. There's always talks of other procedures, other appointments, other doctors, and future surgeries.

This is all a direct result of having been born with Goldenhar Syndrome. This is sometimes referred to as Oculo-Auriculo-Vertebral Spectrum. This spectrum covers several categories of people and those with Goldenhar Syndrome are some of the most severely affected of this particular group (read more here). There is no known cause of this syndrome at this time and it actually took us years to reach this final verdict, having floated between this and CHARGE syndrome and Branchial Arch Syndrome for his first years of life. I can't stress how much easier it is to walk into a doctor's office or E.R. for that matter and name a syndrome rather than say, "They don't know what syndrome he has yet." Even though it is a very rare syndrome, they can at least take a minute, google it if necessary and have an idea of what they are dealing with. Along with severe ear issues, ADHD, and dental problems, he has a dermoid in his eye, which is similar to the skin tags he was born with, only we haven't had this removed since it's unnoticeable at this point. It is much like a skin tag, only under his eyelid, unseen unless he pulls his lid back. (I completely freaked out and went into an all out panic when I discovered it when we were making faces at each other one day when he was a toddler.) He has his vestibular issues we've grown used to and his slow growth.

He hasn't had an easy road and never really will compared to many of his peers, but he does amazingly well. He has friends, he is bright, he is lazy, he speaks well, he listens when he wants to, he misbehaves, in other words, he is "normal". He will still have the jaw distraction surgery after puberty sets in, and we can only pray that nothing unexpected and more serious pops up to catch us off guard. He certainly isn't looking forward to having his jaw bone lengthened and wearing a metal contraption around his face, but we hope that it will help align his teeth better so they don't wear down as quickly. One day, he'll likely wear dental implants for the missing teeth and his mouth will likely look prettier than mine but until then, he'll just have to use what he has, eat softer foods that require less chewing (I'll take his steak!) and he'll continue to grow as big as The Lord meant for him to be.

Even though he awoke with 22 teeth and had three removed by the dentist today, he's in good spirits. I fixed him a large peanut butter/vanilla milkshake for lunch. He had his ears tuned up last week, and his next appointment will be in 6 weeks for another tune-up. Until then, he'll be hunting, playing, inventing, schooling, and being a boy....ahhh, the good life!

why match socks??