Metal Mouthes

Well, we have both kids in braces. It all happened so fast with Brooklyn. A couple of months ago we never guessed she needed them but one glance at the X-rays and it became clear. Her baby tooth will be extracted next month and the Orthontist can begin the process of pulling the crooked adult tooth down into the proper position.

We visit the surgeon at the end of the month to decide what is on the agenda for both kiddos. Will it be a jaw distraction for Gman? He will also give us details about B's pending surgery. Busy summer, but still Blessed!

Braces for Straight Teeth

Yes, you heard me right. There are braces for straight teeth. Why would someone want to pay thousands of dollars out of pocket for braces when the child has great, and straight teeth? It's called impacted #11. That's the canine tooth. My Brooklyn is about to begin the whole process of getting braces, see an Oral Surgeon for a tooth extraction and try to pull down the impacted adult tooth. This was devastating news to not only us, but the Orthodontist who loved how pretty and straight her teeth are, but I looked at the X-rays and there is just no getting around it. It needs to happen, and happen soon.

Over the summer we have the bulk of the work completed followed by about two years or so of clear braces. She also has TMJ and will be under treatment for that as well. She already has cochlear implants, glasses and now adding braces too. I've tried to encourage her to try contacts really soon but she is nervous and says she isn't ready. With volleyball tryouts only a few weeks away, she may find out that if she makes the team, contacts may be the best option! I can't believe she is about to be in the 7th grade! Gage will be going into the 10th and he is only weeks away from getting his driver's permit! He too will visit the Oral Surgeon to give us an estimate of if/when he will be facing his much awaited jaw distraction.

Where has the time gone?

Spring Breakin' It

So what have The Blakelys been up to? It is best to do this in picture form. They were recently seen for an ear "tune up". Brook is still on a once per year or as needed basis. Gage is still as needed but seems to be going every 9 weeks or so which is a huge jump from our monthly visits from previous years.

What else is new? We've spent the first three days of our Spring Break in either Dental or Orthodontic offices (no surprise there), trying to get some things taken care of while we are all out of school. No word on when they think Gage will (or if it is out of the plan) need his jaw distraction. We are still in the infant stages of Orthodontia.

I no longer work at the elementary school, I have moved over to the high school. Brooklyn will be over there next school year so it made sense for me to go ahead while the opportunity was there to make the transition. It wasn't easy but everyone has seemed to have adjusted well.

We still love being at home and wouldn't trade it for any place on earth. We love the sunrises and sunsets, we love to spend time in the woods with campfires, four wheeling, and just enjoying family and friends.

Brook still loves babies (but real ones now, not dolls) and will scoop one up anywhere she can find one. I see lots of babysitting in her future as she approaches the teenage years. Gage is obsessed with building things. He is always, everyday, in his shed working on furniture or handmade guitars.

We lost our beloved dog Marley in a tragic accident so the husband adopted two puppies (both Lab mixes) and they could not be more adorable. The kids really love them!

Next on our list...Brooklyn tries out for JV Volleyball in May. We wish her the best of luck. She already worries about how she will keep her implants on as she jumps around the court. We know there are many sport options that can render this, she just needs something to worry about (smile).

Have a Blessed Spring Break

Heavy Metal

Let's face it, he was heavy metal the minute he picked up his first guitar. Well, not really, but he is certainly cool enough to be...

We finally got the boy in his braces. Sorry to all the Goldenhar patients that don't have a cleft palate, insurance will likely NOT pay for the braces. But that's okay. He is in them, and will be for a while. They only put on the top row this go around and will add the bottoms at a later appointment. He will also add the spacer later as well. He didn't want to put everything in his mouth at once and have the Gman super uncomfortable. The braces hurt bad enough, but nothing a little ibuprofen won't handle.

We will remove the braces in about 6 months temporarily to add composite bonding type additions to the front teeth to make them look more like full pretty teeth. After that is done by his family dentist, we'll go back and put the braces right back on. The bottom row will be moved only slightly forward and then a pediatric bridge will fill in the remaining gap where he has no adult teeth (missing bottom front four). After the boy finishes growing at around age 20, he can decide if he wants an adult (more permanent) bridge or dental implants.

I know it sounds like a lot, and we haven't even been back to see the surgeon about the whole jaw issues, but he too wanted to wait until after age 18 to fix any of that (should we go in that direction). However, by the time the chap is in his early 20s, he'll be so glad he did all of this and I think he'll love the results! We are blessed as always to have a magnificent team helping and guiding us along the way!

 The main concern now is keeping the health of his teeth and progressing in weight gain. Gman is afraid this will set him back but we have loads of ice cream to supplement his lack of biting into food that is just plain uncomfortable and not recommended for a young'un with braces. The anxiety is behind him now and he's getting used to the heavy metal already!

Brace Yourself

After years of anticipation, guess who will be getting braces next Saturday?

That's right, this guy! We tried for over a year to get insurance to pay for them since it is medically necessary per the dentists, and orthodontists that we work closely with, BUT since he does not have a cleft palate, we got a big fat no! Goldenhar Syndrome has left his mouth with its share of challenges and we are not sure yet how long he will wear the braces but we'll see how it all goes.

We are moving teeth around to fill in the gaps where no adult teeth are present. Then, the dentist will be able to shape what he does have and after that he'll be ready for dental implants. Since dental implants can't be side by side, we must move teeth around first so that they can be placed sporadically. He has a long road ahead of him with orthodontia but by the time he graduates high school he'll be so glad he did it! ((He is less than excited))

Big Boy

In person, I know he still seems small for 13, but today at his annual appointment to see the CRS team consisting of a nutritionist, social worker, a team of dental experts, etc., they were BLOWN away by his growth spurt. Even more remarkable, this spurt actually happened sometime between May and November because we had other doctor visits in between to do weigh-ins....He has never been above the 5th percentile and today.....25th percentile!!! He has grown nearly 4 inches and gained 19 pounds in that time frame. It sparked their interest in Goldenhar Syndrome and several declared they do some more research on the subject.

The difficult news...medically, he needs lots of Orthodontia. He can't even eat corn on the cob, bite into apples, and lots of other things he don't eat because of his missing/malformed "teeth" called pegs. However, according to the widespread changes in the recent medical insurance coverage....a certain code doesn't fall under the "qualified" category anymore since he has Goldenhar Syndrome and not a cleft palate. His face is crooking more and more and will affect his upper face soon including around his eyes...it is expected the skin of one eye will begin to pull down and around toward the short side (right) as he continues to grow. He still will need dental repairs after Orthodontia and then the jaw surgery to follow in just a few short years to lengthen that short bone.

They are resubmitting paperwork in hopes to get it passed as necessary and not cosmetic for the common crooked teeth. We will sit back, and pray it works this time! We are just glad to have him, and we'll take it one day at a time. He sure is a fun child, and we are Blessed as his parents.

87

Gman had an appointment today to check his height and weight because some of his medication suppresses his appetite. Well, at age 13.5 exactly....he's finally broke the 80 lb mark at a whopping 87 pounds!! We are thrilled! He's 5 ft 2 in and gained 10 lbs in the last 5 months!! His failure to thrive as a baby has come a long way.

Orthodontia was denied by insurance despite his syndrome that is directly responsible for his anomalies. We go see the oral surgeon again in January and see if new paperwork will get it passed through because he not only needs braces, he needs dental implants and possibly jaw surgery as well. I used to think that was so far in his future but at age 13, he's fast approaching the age (17) where they want to address the jaw distraction issue. Only time will tell, but he's a pure-bred champion so we'll cross that bridge when we get there (and with a smile on our faces).

Brooklyn is still doing well. She's almost 11 now and thinks she knows everything. Her grades have improved quite a bit this first report card and she is doing great. She listens to music with typical headphones on her tablet but still uses the speaker phone while using a cellular or other telephone. Gage prefers texting and just doesn't seem too interested in learning to use a phone any differently, though he can hear some using the speaker phone.

Brooklyn's hens are now laying. She started with 18 for the 4H project and gave away 9. Some of her 9 remaining began laying eggs this week (brown ones). We are still waiting on the Easter-eggers to lay which will be pastel colored eggs. She is such a good little "mama" to them. Other than that, we just enjoying mountain/country living and can't believe how Blessed we truly are!

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??

Mapping and More

First, I want to say, Brook and her dad refurbished a couple of benches given to us by a friend whose Dad was going to toss them! And look, good as new!

Nice work B (and Daddy too!)

Although I'm about to leave for the day's final event (PTO meeting), I wanted to give some good news to those keeping up w/my little Goldenhar child. NO ORAL SURGERY until he's like 18 !!! The specialist said no way would he want to do dental implants, jaw distraction or likewise at this age if not completely necessary. He said, Gage does need all that but needs to wait til late teens or it will all have to be re-done later!

He was an angel today, and got the good child prize of a well sought after milkshake....

She however, did not get a milkshake...

She did however fall asleep after numerous outburst and undesirable behavior, one of which included accidentally knocking over a small table at Children's while we were waiting on Gage to get his Xray (to check electrode placement on his right ear)...more on that later!

She did complete her mapping and goes back in July for speech perception tests and mapping again in Oct. !

And tomorrow, I have to go pick up more I'm All Ears books and get my driver's license renewed (it has already expired, oops) so looks like another packed day of travel.

Just answer the question

Just answer the question....that's what I told myself over and over yesterday as we approached air time of our 2 min. interview w/Jeh Jeh of Fox 6 News (far right). These gorgeous ladies are only a few of the Charity League Members who raise money for our HEAR Center. I have not seen the footage yet since I have no DVR, but I'll visit my sister on Sat and catch it there. All the things I wanted to say kept popping up in my head but I had to focus on Jeh Jeh and wait to see what he asked me, he gave me no hints so I could prep myself, maybe it was better that way....? Anyway, if I'd had a couple of extra minutes I would have said...

"and I wanna give a shout out to all my PEEPs and all my Facebook friends for the support, all the mamas out there writing those blogs, big whoop whoop to my girls at Deaf Village keepin' it hot and a quick shout out to the HEAR Center for keepin' it real, you all are completely off the chain!" (lol)

On to other Blakely news...

Gage had his seventh electrode shut off yesterday (all have been on his right side). Not exactly sure what's up w/that side! He's hearing fine still so we're good for now. Other than this his audiology appointment went great.

Now, for our final stop of the day, our first appt. w/an orthodontist.

The first couple of hours weren't bad, an artist was there volunteering, he had something to do...and we had to see a nutritionist, speech pathologist, social worker, dentist, which took less than five min. each. No biggie, maybe this clinic has a lot of kids come thru that need the full treatment who knows. I did get some fattening up tips though for Gage who weighs 49.8 lbs! Anyway, we waited some more then finally made our way back to see the doctor we had an appt. with...only to wait an hour and a half longer. It was almost 4 hours past our appt time when Gage leaves this enclosure and states, "Hey, I'm getting bored in here!" and when he turns to re-enter says in his most displeasing voice, "Slowest...doctor...ever!" and one minute later, the doc came in *smile*. We had already been gone 11 hrs since we left before daylight and Gage's ADHD pill was wearing off. He looked at Gage and is referring us to a specialist who deals w/lower jaw issues instead of cleft palates which is his specialty. He did give us hope that Gage might can be fixed orthodontically rather a jaw distraction but he really didn't know for sure.

Here is Gage bored, resting between an office chair and another chair that was in the patient room because he told me, "Mama, I don't sit on those cushioned benches w/that white paper on it because babies' bottoms have been on there, that's just gross!"

I have another story I will post this morning hopefully if I find the time!