Almost High School

I've made it through IEPs for next year without tears. I begged and pleaded with the faculty to fail my sixth grader so he doesn't have to go over to that high school building next year, but they refused! For the next three years, I will have children in two different school buildings, several miles apart which will be a challenge but we'll survive I'm confident.

Gman will have classroom notes provided to him since he relies heavily on speech reading. He did great with AVT (Auditory Verbal Therapy) when he was younger but with several replacement/revision surgeries on his implants, he relies on speech reading to help him "hear" in noisy situations. He will not be quizzed on any films or movies without proper captioning and he will have an inclusion teacher which will help as well. Both of my children do small group testing on any state standardized tests.

Brooklyn has improved her speech reading ability over the years but can't be deemed a master by any means, since she can hear better in a classroom (with the aid of her personal FM) and she is all set for fourth grade. I'm very grateful I work at both schools subbing and hope to be at both A LOT next school year!

Goldenhar Boy

So I was lying on the O.R. table (it was actually more like a doctor's office-I had no anesthesia) trying to think of anything to say to drown out that LOUD snipping as the surgeon removed skin and tissue deep within my foot (another skin cancer). I blurted out (in a voice that was a little too loud for the awkward quiet) "So where did my other doctor go?" Realizing instantly my voice was off key and too loud I tried to retract some composure as my blood pressure soared with every SNIP, SNIP, SNIP!!!! "I mean, Dr. C? She's not here anymore right? She always used to ask me questions about my Goldenhar Boy."

She knew exactly what I meant when I said the word Goldenhar and she starting spouting off facts she knew to confirm I was referring to the same syndrome, "Does he have any Renal issues?" Our conversation progressed just as I had hoped and I forgot all about what this lady was amputating...

By the time she finished sewing me up, I had agreed to bring him in, next November, to meet doctors from all over as she was in charge of organizing an annual event for doctors to meet with patients who have disorders, dermatology issues, or rare syndromes which might land them in an office like theirs one day. Basically Gage and I will kinda sit around and chat as these doctors make their way from group to group and answer any questions they may have. I warned her Gage was quite the talker and he's used to helping out the medical field any way he can. We know that, not only could it affect his own future, but others that come in behind him with this same rare syndrome...
a doctor will be able to say, "Oh Goldenhar Syndrome! Yes, I'm familiar with that, I met a 12 year old boy with that when I was in Alabama once!"

We are beginning our Spring Break at school this weekend and it won't be long until we are here for the Summer!! Woop Woop!

Swimming with Cochlear

We were invited, along with a few other families, to try out the waterproof swim gear coming out soon from Cochlear. You really can't see the bags from this photo because Gman needed a swim cap to hold them on his little malformed ears but other kids were able to wear them with a small band holding them in place. Are they completely ready for the market, not exactly but with just a few small touch ups I think they'll be a huge hit.

Did they work? YES! They did the job. His implants did not get wet and for the first time, he could swim, and go under water, and still hear wearing his processors the whole time with only a slight compromise in sound quality. The echo from the swimming area was a challenge anyway but if I took him down to the other end of the pool, covered my mouth so he couldn't speech read, ask him questions....HE COULD ANSWER THEM!!

He had to be very gentle before he put the swim cap on ducking under the water very easily or the coils (magnets) wouldn't hold. He tried the headband the other kids were wearing and it still wasn't enough but a swim cap held everything on great! The best part? He loved it. He smiled and said he liked being able to hear while he was in the pool. I watched him splash and make noises with some of the swim toys just to hear them. That was pretty awesome!

The only negatives I could see: I would prefer a brighter color (not clear) because we go to lakes a lot, should one come off, I'd like to see where it is. Also, the bottom of the product needs to be less "stiff". It rubbed into his neck and was uncomfortable. It didn't appear to be a problem with everyone depending on the child but more than one person had this issue. I like the fact that they will be affordable but we would probably use like 10 a day during summer with both kids and both ears so it would be nice if you didn't have to rip the bag open to get the processors back out and reuse them all day and just throw them away at the end of the day.

My friend Lisa was there also and she did her best to "drill" Cochlear for inside information on the N6's or the next processors due out in Fall from Cochlear. We are holding off to upgrade Brooklyn until the new ones come out so we are hoping they are as awesome as they plan. Sounded to us like they will be better for the kids in classrooms and possibly come with a lapel mic for teachers to use in place of FM systems since the new chip would make things easier for the kids changing environments. We shall see and our hopes are high.

Not so Good

Well, we thought we were doing great.....however, after MAPping both children today, we popped them into the booth and obviously from the chart, they hear great with their cochlear implants...
(You need them to hear within or above the speech banana if at all possible which both of my kids do, thankfully)

...the bad news? They don't hear great in noise. In fact, you can see from the numbers over to the side, that they both drop to less than 1/2 of clear understood speech. Brook uses an FM in class and she does really well with it, however, little man has abandoned this as of fifth (really fourth) grade. So, he's trying a noise program right now (which he doesn't love) but he'll either adjust, use the FM again for class, or settle. I'm hoping the new program will help him out. I can't imagine only getting 46% of the information all day long.

On a lighter note, this is the difference in words they create outside the booth door while waiting on each other........

She innocently works away at Bat, Sunroof, and many other common words, while he is completely amused by his words Spaz, and turds...(boys)

Brooklyn is good for another year while Gman will go back in a month, see how the new program is working and we'll put him in the booth with this program and see if he can up his numbers any. Brooklyn doesn't seem to be that bothered in ordinary situations and since she has an FM at school, I'm not as worried about her numbers.

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??

Lil Updates

I have become the terrible blogger. My kids have even updated their blogs and I have not! I'm telling you, between my two jobs (sub-teaching, accounting office), home, PTO, church, kids, husband...basically my busy and fun-filled life, I barely have time to sit at the computer anymore.

Brook: We are still hoping to upgrade her "ears" around March or so. She needs *and deserves* an upgrade since she's had these processors for over six years...and if you have kids, you know how much wear/tear these things go through in six years no matter how well you take care of them! She is also about to have a birthday...the day after Christmas but we celebrated early and had a very small pizza party Saturday. She wanted to invited EVERYONE but unfortunately that wasn't allowed and the ones she did invite got struck by the nasty virus that is going around the school....she almost didn't make it herself but got well in time to go for pizza w/a few family and friends.

Gage: He is great. He's a boy (lol). He has not used an FM system all year long (at his request) and his grades are pretty average now of what we would expect from him. He enjoys school, and he's really enjoying church these days. He wakes up each morning with his ADHD in full swing but right when I'm about to pull him down from the cabinets, walls, rooftop *lol*, he'll brighten my day by belting a church hymn from his breath and my day totally changes. We work closely with our doctor to manage his ADHD and we seem to have it under control for the most part.

One of his batteries died yesterday in class and went for a few hours with one "ear" but made it fine. I was at work and he said he didn't want to bother me so he just "made-do" for the remainder of the day. He is due for MAPping just after Christmas while they are on break from school and Brook will go for her yearly in January!

That's it from the Blakelys. Have a very merry Christmas!!

I am thankful they are deaf

If you had asked me eleven years ago if I was glad my first born lived in silence, I would have said no. The experts told me he would learn to speak though it would be limited and at a much slower pace, and that I needed to narrate everything I do. When I woke in the mornings we put his prosthetic "ears" on knowing he would only hear certain parts of my words but we were to spend our day talking...about everything. If I walked to the kitchen I sang, "walk, walk, walk," with every single step in hopes that one day, he would learn that everything, even motions, had names, sounds, labels. By the end of the day, I rarely even answered the phone and had to force myself to speak to a tired husband when he came home from work, because my words had been given to my child.

There were days I thought would never end and when he finally got his cochlear implant, we had to start over again. Sister came along, and we were blessed to start it once more for her so words became part of our life. I learned to describe feelings and emotions, we stopped at every tree, we smelled every flower, we listened to every bird. Eleven years have passed now and I can honestly say that I'm thankful my children are deaf.

My busy world slowed down for years as they began to grow and learn. Each day, I'd step outside my door and wonder if there was anything else left that I could give my children and something new would appear. Their little face would light up with excitement and tears would run down my cheeks as The Blessings poured in day after day.

I had no idea that The Lord was crafting me all this time. HE was teaching me how to see HIM, how to feel HIM, and how to teach my kids about HIM. HE was teaching me to write with the same words I taught my children only they became more than just words over time. HE taught me to notice everything and then translate what my eyes and heart could see. Today, I am thankful HE lets me feel. If my world had not slowed down a few years ago to absorb HIM, I would not have the relationship with Christ that I do today. He took something very close and special to me, my children, and had them teach me how to hear HIM.

Have a wonderful Thanksgiving everyone!

Blakely Updates

I think my child blogs more than I do now. That's what happens when you have two jobs, two kids, a husband and a wonderfully fun place to live! I keep extremely busy these days between all of that and PTO and church so I have my excuses for not blogging.

We finally have Brook's FM working again on both ears. She's back on track. Even though she's only in third grade, I never have to tell her to do homework, she just does it. The other kid is a different story and his grades reflect that! He just got his ears MAPped again so he's hearing better for now and will go back next month as usual. His nose bleeds have picked up once again. We were supposed to get that cauterized before, during another surgery, but we never had it written down for the surgeon to do, just a verbal thing, so with Gman's complications it got overlooked. We may end up having to take him back one of these days for a little procedure to fix that. He hates nose bleeds.

We are excited about Thanksgiving this week, and look forward to family time. I've actually been put in charge of two casseroles for the first time ever so let's hope they are edible. I'll be gone ALL DAY LONG on Friday for my annual shopping trip and we plan to put up our Christmas tree this weekend! I have so much to be thankful for and everyday is kinda like Thanksgiving for me so say your prayers, and let HIM know what you are thankful for this year!

Trunk or Treat

Our first Trunk or Treat at our church and the picture of my trunk decided to do a disappearing act on my phone! It wasn't that special but we had blue and white lights all in the trunk with snakes and candy everywhere. I did capture some other cute trunks though and Brooklyn being a rock star. Gage was too mature to dress up at the church event (lol) and he was too busy running 90 mph with his church buddies so I never got a shot of him.

I will tell you that even at close range, it is still to this day harder for Gage to "hear" in the dark which means he uses lip reading quite a bit. I don't mind I assure you in fact I encourage it with him. He's had way too many surgeries and although there was once a time he didn't rely on it at all, he needs the visual. Brooklyn is actually a better lip reader now than she used to be. She used to not be able to read speech at all, I could say watermelon and she's say shoe??? My mother actually pointed out that she was doing better (I didn't believe her at first) after Brook had spent the night with her, and sure enough...she is. However, during the day with her ears on, she doesn't need it at all.

Pumpkin Patch

So B is down to one "ear" inside the classroom. Both of her processors are working fine but part of her FM system is out for repairs so she has to make do with listening to her teacher via one ear until the other FM battery cage is repaired. It shouldn't take long so hopefully next week or so, it'll be returned.


We took the kids to the Pumpkin Patch with our church yesterday, they loved it! Even my Gman who is too big for all things childish. They had a band, they had food, they pumpkins, they had hay rides and huge jumpy things...My kids didn't go in the enclosed jumpies but they did do the slides.

they were supposed to make silly faces

She needs new ears

Gman had his much needed MAPping session this past week. I was in survival mode and trying to get well from a wild form of crud that unleashed inside my head and lungs, so I'm just now feeling bloggy!

We had hoped this tax season (around March or so) that we would have been able to upgrade Brook's processors. She's had them for years and they've been out of warranty for quite some time. However, with all of Gman's surgeries, we have always had extra parts to make do if something broke. We just never got around to it and the cost of such an upgrade is very steep. Like just under three grand steep (that is just a guess-our insurance will cover 80% of an upgrade-they are just under 20 grand for two ears-but we would have a trade-in credit with two of her old processors from what I can tell...

The bottom line is that by this next tax season, we will have enough saved back to upgrade the child to new ears. That is going to be hard with Christmas around the corner but she needs them, she wants them, and she deserves them. I am very excited about it and will be praying that we accomplish this and get that baby some new ears!!

She goes in for her annual MAPping in January and we will know more about the finances, and possible upgrade at that time. Gman is still going every six weeks at this point and will be MAPped again before our Thanksgiving break. He needed lots of changes on both ears this time, and he did so well...he actually earned a prize!! Blakelys never earn prizes there (they just give up) so that was a real treat!

We are torn between going to the 300th cochlear implant celebration next Sunday with The HEAR Center to the ever-so-awesome McWane Center or the Pumpkin Patch with our church. We signed up for both and if it rains we have decided to attend the science center (my kids have been recently already) and if not...Pumpkin Patch here we come!