Sunday, March 15, 2015

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 month, the are to present their project at the state competition!

Thursday, January 22, 2015

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 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.

Tuesday, November 11, 2014


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!

Wednesday, August 20, 2014

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!

Saturday, July 12, 2014

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.

Saturday, May 10, 2014

The Teenager

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.

Friday, May 9, 2014

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!

Tuesday, April 8, 2014

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?

Wednesday, March 12, 2014

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

Monday, February 17, 2014

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 looks like my baby girl will be hearing better in no time! Thank you all. B is smitten!

Thursday, January 30, 2014

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.

Monday, January 27, 2014

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!