11 Years of Hearing

It is hard to believe we are approaching 11 years of hearing with our first born. Brooklyn has been hearing for almost that long as well, but Gage was three and a half years old when his first cochlear implant was turned on. Here's how funny all that noise can be!




We had no idea that the three years of silence or at least minimal hearing aid benefit would never show at age 14. We didn't expect him to catch up so fast but a little boy's determination and hard work paid off. He was released (graduated) from AVT only a year later just when his sister began her journey. These two compliment each other well and they sure have taught me more than I could ever teach them!



I need to post some more videos!!

The Problem with Hearing Kids

The problem with hearing kids, is they hear. We hearing parents of deaf children grow accustomed to being able to get up at 4:00 a.m. (or stay up to 4:00 a.m.) and do dishes, laundry, vacuum, any noisy task we want because our kids will sleep soundly. When hearing friends come over, we panic. Suddenly everything we do becomes magnified by 10,000 and we realize how noisy we parents really are.

I "shhhhed" myself this morning when making breakfast as the two deaf ones slept soundly and the one hearing friend (also was out cold) was at risk for being awakened. Luckily, no fire alarms blared this morning (which is usual) so I was pleased they got their much needed ZZZs. I guess we can take that early morning time to do other things like, blogging, drinking coffee, and watching the sunrise!

Making an Electric Guitar

So what do bored teens do when school's out for summer...make homemade electric guitars of course!  This first video is the very first one he made last week.

The upgraded version of the guitar soon followed when a neighbor (who is very smart about a lot of topics-guitars is not one of them but welcomed the challenge) took the boy under his wing and let him come over everyday (for hours on end) and use tools, ask questions, and together...two great minds came up with this: (though he warns he still has string work to do)

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!

Hovering

On an impromptu stop at a Wal Mart, my mother decided to get G's hair cut. He needed a cut desperately and she was being the good grandmother and getting that little chore out of the way while they were out shopping.

Well, "the girl" my mother called her, sat G down and mother explained to her that once he removes his CIs that he'll hear nothing. Mother proceeded to explain how he wanted his hair trimmed up and assured "the girl" that she'd stand close by in case she needed her to communicate for her while he was off air.

Hmm, "the girl" got really nervous and told my mother she'd have to go sit down and not hover over her while she cut hair....(hover over her?) Yep. As you can imagine, that didn't go over well with G's grandmother. Mom said, "I'm not sitting down until I'm certain you know how he wants his hair cut!"

Needless to say, he got a slight trim and we'll just see that he gets to his regular barber (who is much more understanding and nicer) than some people tend to be. Completely made the Gman uncomfortable as well as mom but they both learned something from their impromptu stop.

Wanted...

...because some deaf children really do hear! 

The boy picked up a guitar last summer and hasn't put it down since.  So five guitars later, we started him in guitar lessons to couple his natural talent...I should say un-natural talent, God-given, God-decided-to-bless-him talent.  However you look at it, if you had asked me ten years ago when he was four if he'd be able to ever hear a guitar well, much less play one, I would have said NO.

Regional Tech Fair

One proud Mama alert...

Never in my wildest dreams did I imagine this high-tech kid would be standing in front of judges presenting a project about her cochlear implants. She and her friend/partner decided to do a project about B's ears and how technology helps her hear and the impact it makes at school, including her friends' point of view and how her peers play a role in her success.

These girls were asked many questions, they answered confidently, and brought home first place medals......next month, the are to present their project at the state competition!

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!

A Blakely Update

Not a lot of posting from the Cochlear Kids as of late but we are in full swing here in Alabama public school. Gage has started the 8th grade and is doing well so far. They are beginning to read The Giver in English class. He was also assigned Music Class and despite his initial thoughts, it will be a true asset to him in the future if he wants to play guitar. He picked it up a few short weeks ago on summer break and with a few chords from his daddy and a few from a cousin, he's learning...

Brooklyn has entered the 5th grade. She is still with me everyday since I work at the school full-time now. She will leave me after the 6th grade and go over to the high school with her brother. Her N6s are still doing fabulous! She loves her chickens which will start laying eggs within the next few weeks!

We love it here on "the mountain"...the world moves a whole lot faster than we do but we wouldn't change a thing!

Her "New Ears" Audiogram

Her last audiogram in 2013 w/her Freedoms

...and you can see her Speech Reception was at 20 db...meaning she can hear speech softer than that looking at the chart but not clearly enough to understand it until you reach 20 decibels.

Now with her new N6's...

 

 

She still hears very well with her CIs but can hear clearly at 5 db in the sound proof booth. That's a soft whisper!

 

We all know that in any type of noise that will dramatically decrease her ability to hear speech but we are very pleased with her new ears and the main thing is...she too is very pleased with them and that's the most important!!

 

She will be starting 5th grade on August 7th and as her team leaders, we have agreed that she can try the classroom(s) without her FM. She does NOT want it and this is the same grade Gage quit using his as well. We sought the advice from her Hearing Impaired Teacher and she agrees we could give it a try. If she needs it, we'll give it back to her no problem. I work at the school so I'm just a short walk away if she needs me.

The Teenager

 

 

 

Thirteen

 

I remember my first Mother's Day. I wondered if I would still be a mother a week later, a month later or a year later. People buzzed around me with concern for my newborn child. We become mothers because we have children. This little guy taught me how to be selfless, how to be patient, how to be deaf and then how to hear. My life slowed down and I watched him grow up in slow motion, yet here he is, a teenager.

 

Not long ago I was driving down the road on the way to a Wednesday night church service and I hear a 12 year old voice lift from the back seat, "Mama. I know why you only had two kids." I respond at the odd and random comment, "Oh you do? Okay, let's hear it." He said, "because you didn't want anymore deaf kids. We're a lot of trouble and you didn't want to have to do all that again." I quickly interrupted, "That's not true or I would have never had your sister. You would be an only child." A smile reached his face as we pulled into the parking lot.

 

Children teach their parents just as much as parents teach their children. Families grow and learn how to love each other despite faults and failures. There are times I wake up in the mornings and hear a child's voice that thirteen years ago, I was certain I would never hear. He enjoys his silence at times and will often belt out an old church hymn in the shower and I realize, he can't even hear his own voice...he's just offering it selflessly to his family and to The Lord. He can put his "ears" on and listen to the rain pound our old tin roof and a smile of appreciation will spread across his face. He brings more joy to our family with each passing day and I am so very thankful I was chosen to be his mother.

 

We are honored to own a teenager this day. He is loved, he is appreciated, he is a Blessing. Happy birthday buddy.

New Ears Update

After a full ten week wait, we finally received B's new ears! She was so excited to go get them turned on a couple of weeks ago. She loves the fact that she can now change the colors without the messy stickers. We also figured out that the N5 covers (her brother wear N5s) fit her N6s and they are cheaper to buy so we ordered a few more colors for her along with the coil covers to match.

I am so proud for her and proud of her. She was asked to speak to a first grade class about her implants since their reading story was about a deaf child. The teacher has a deaf nephew and has taught my children in the past so she was quite familiar with the cochlear implants. Brooklyn was happy to show off her ears yesterday to the crowd of six/seven year olds.

We will take her back in a few weeks for some minor adjustments and put her in the booth for an audiogram so we'll have a better idea/comparison of how she's hearing. We only have two more weeks of school here in Alabama and we're out until the beginning of August! IEPs are done and State testing is underway. She has no special accommodations other than testing in a small group setting in case she encounters technical difficulties. I am sending her back-up ears just in case.

Brooklyn has also enjoyed the bilateral accessory cord she can plug into her electronics (and so do I). We have a few of the swim bags we will use over the summer but we will be looking into purchasing the new aqua devices Cochlear has come out with for both children so they can swim (without the embarrassing bags). All in all, we are very excited, very pleased and very Blessed people!

Week 10

We have begun week 10 of the "it should take about 8-10 weeks for the whole process". Looks like our "process" is taking longer. However, I did get a letter from our insurance company that states that it appears she will qualify for the replacements. I heard from SunMed today who stated they are still waiting for final approval and then they will contact me. So again, we sit and wait. I was teaching yesterday about adages/proverbs. One adage stated, "Patience is bitter, but its fruit is sweet." I'm going with that!! Next week I have both of my children's IEPs for school. Gage will be preparing for the 8th grade and my B will be in 5th!! How did this happen?

Waiting to Hear...

...and the latest response from SunMed is..."Mrs. Blakely, I will contact you as soon as I hear from the insurance company." Here is what I would send if I we are still waiting at the end of this week:


Dear (insurance company):

My ten year old child, Brooklyn Blakely, is seeking approval for replacement processors for her cochlear implants. I understand that your work load holds tremendous weight and we are trying to express patience as we await this approval but we have basically been on hold since the first of February.

While everyone in your office enjoys impromptu conversations with strangers in a day's passing or the background music playing overhead in your favorite local retailer, my child is missing out. She smiles and nods her head at random people as they speak because she has no idea what they just said, or may have asked. She has to ask what song is on the radio because half the time sound is cutting in and out. The eight year old "ears" she is currently wearing fail her almost daily as she gets up in the middle of class instruction to try to restart them, sometimes without any luck at all. This is very embarrassing for her since nobody else in her class has hearing loss.

While everyone in your office enjoys relaxing at home after work, she comes home in tears on some days, purely exhausted from trying to hear the world around her. I understand the difficulty of an overwhelming case load, but as you hear the softest droplets of the rain on your rooftop or listen to the words of your favorite church hymn, please remember my daughter. She needs those things too. Thank you so much and please look into her case if you get a chance. It is important we get her replacements as soon as possible.

Thank you, Val Blakely

She's Not Been Approved

We've waited (almost) a month now since we had our fundraiser, since we sent in our initial paperwork, and finally we have a response...she has not been approved (YET). We are just now getting to that approved/not approved point. I did receive a figure (a total) on the amount of out of pocket expenses for the processors and WE HAVE ENOUGH FOR TWO!!!! Hallelujah.

I quickly responded with "Move forward, move forward. We have it!" Several thousand dollars is a lot of money but Praise The Lord He's seen fit for her to get two new ears, not just one. Now they are sending the "okay" to my insurance company to proceed with paperwork and when they approve her..(yes, I'm claiming it, V-vi-ctory!)...we will place our order. I already have her an appointment AEA week in hopes we will have them in our hands by then, and ready to TURN THEM ON!

And what's even better? We have enough to buy two new "ears", the accessories she wants, extra batteries, the aqua-packs for swimming, and maybe even enough left over cover the clinic bill once she goes in for her MAPping session to have them turned on and in tip top working order! Covered-in-full. If, and that's a big IF, anything were to be left over after I get her all set up, I will buy a few extra parts for Gman's CIs so he will continue to be in excellent shape and we should be set for a while!

We could not have done all that on our own, so thanks to HIM, HE guided our little community and provided a way. Thanks to those who followed HIS lead! My two PTO friends who worked so hard, the two wonderful families for singing, and every last person who donated money or food for the event or even prayers! I had one lady hand me a check one day and with tears in her eyes she told me that after her daddy died (recently) she had a little bit left over and instead of buying herself the earrings she wanted....she wanted to give it to my B to help with new ears. She said she couldn't stand the thought of her needing new ears and knowing she was spending money on "bling" so she wanted to give. Warmed my heart!

Because of this wonderful community, this rural, small town big-country place...it looks like my baby girl will be hearing better in no time! Thank you all. B is smitten!

Thank You

As we begin to fill out our thank you cards, I realize I didn't buy enough. There is no way for me to personally thank everyone because there were so many people who donated money, food, their voices, and prayers for the event last weekend. There were people in the crowd I never got to see, or hug, and filling out these cards seems like such a small thing to do. Our community has pitched in and raise over $5,000.00 towards Brook's new ears. She said the other day, as I tried everything to just turn one of them on, "I want ears that match. I want some that are all the same color and not pieces put together!" We have submitted her paper work to SunMed Medical and now we wait. They say the whole process will take 8 to 10 weeks but we are very excited, and nervous, and trying to be patient.

Awaiting the Call

I am now just awaiting the call back from SunMed (I had not contacted them prior to this weekend's email) to see if we have enough to proceed with Beez replacement processor order! I have to work all day but can't wait to get home and see what they say. I know they'll have paperwork to do, info to wait on from insurance etc. but to know that we have taken one step forward towards getting her new "ears" is beyond exciting. I was shocked when the benefit singing raised so much in one night but I shouldn't be. The Lord Blessed us all in that room Saturday night and I'm grateful we were just present! The Angelic voices that my children could hear, the Testimonies that my children could hear put a smile on my face but the Angelic voices that I could feel and the Testimonies that I could feel, put a smile on my heart. We love our community and are very close to that upgrade because of them!

Prepping for an upgrade

We are now prepping in high gear for Brook's upgrade to the N6 Cochlear implant processors. I suppose being out of the loop, not reading blogs like I used to, not reading the group messages, etc. I am just now getting the word from Cochlear that they do not bill my insurance company. That will be up to me to seek reimbursement for any durable medical expense. We will be required to pay the $7275.00 (I am aware they cost over $9,000.00 each but we will do a trade in to receive a discount) upfront for each ear. We are taking it one ear at a time at this point! We have some local friends doing a benefit for us which is scheduled for January 25, and we are very excited. We have a really good start and I thought it would help our friends and family keep up with the process/progress with a visual so each time we add to the "pot", I'll put up a new chart and carry it right through the upgrade process. It's sad that these things cost this much but a blessing that she hasn't got injured or had a failure to require surgery again. Insurance would be billed directly then and we wouldn't have such an upfront expense but we are excited for her, she's been needing an upgrade for years now and this will only make us work harder to get it for her! We aren't looking at it as a set back but a push forward. We've been praying about it, so we encourage all of you to keep praying for her, HE can and will make it happen. We're claiming this one!

The Latest on Goldenhar Boy

So we spent most of yesterday at his annual appointment that usually takes six hours (but we got lucky and were done in 4). This is where a social worker, nutritionist and several dental experts get together and see some of the special cases to make sure the kids are gaining weight, getting proper nutrition and to discuss future surgical plans. We have been planning for a jaw distraction in his teenage years all along but yesterday the idea was tossed up that a different surgery may be better for him. The main problem is finding a proper bite for him with so many missing and misshapen teeth. We are going to start seeing an orthodontist soon (which was in the plans all along) to see if he can move the teeth he has into some kind of "order" if...and that's a big IF, he has enough bone to work with...there may be some bone grafting needed as well. Any type of mouth surgery isn't the most pleasant of surgeries, so I hate it for the little guy. However, we are truly Blessed. Most Goldenhar patients are in far worse shape as far as the mouth/face goes, so we are very thankful his problems are limited. He finally weighs 70 lbs at (almost age 13) and for that we are thankful as well. He's growing, slowly but growing, so for that we are Blessed also. Love this little fellow, and like my Maw-Maw always said, "God's got His Hands on this one."

On a lighter note, he got to see Ms. Sue Sue the artist again. Even though he may have outgrown her coloring, painting, stenciling on an average day...he loves to see her every year and just sit down and talk with her, paint with her, and truth be known, I think Ms. Sue Sue enjoys it just as much. She always remembers him.

Study Day

 Back at the first of the year, as my Dermatologist removed the cancerous tumor on my foot, we discussed my children. She was very interested in the oldest child's Goldenhar Syndrome. She had heard of it, but never seen a person who had been diagnosed to her recollection...so she asked us to participate in a large event held there each November where Dermatology Doctors come from far and wide to learn more...

My mom and I loaded the boy up at 5 am this morning and headed south, to UAB's Kirkland Clinic. They provided us with breakfast, coffee, cookies, other snacks, and more coffee. The boy earned a nice monetary prize from the University for his time and that is probably the only reason he wanted to go (typical). They placed us in a room (other patients were there also) and I kid you not...over a hundred doctors from all over the world came in small groups where I gave my "speech" on cochlear implants, Goldenhar Syndrome, skin tags, scars, dermoids of the eye, etc etc etc...

Gage did grow tired of the whole event after the first hour (we had already seen like 80 people at that point) but he was polite as expected and they all thanked him/us for coming and helping out over and over again.

I had explained to him before we ever went that this would help some child in the future. If they come across another child with these features, conditions, anomalies, they may have some idea what direction to point the parents...and that is all we wanted to do. They also reiterated that him as well so he was happy to help.

Both of the kids did well on their report cards this time, and we continue to mainstream as we always have. They are both participating in the church Christmas play again this year and we are about to leave for practice now. We still hope to upgrade Brooklyn's "ears" by April of next year as we must come up with the funds, since insurance will only cover 80%, we'll need over 3 grand before we upgrade to the N6s. Fingers crossed and praying now, we hope to accomplish this for her. She is on her last few spare parts right now! Until next time....