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 place...it 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!

Wednesday, January 15, 2014

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!

Friday, December 27, 2013

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.

Sunday, November 3, 2013

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....

Monday, September 23, 2013

Where are The Blakelys?

I can't believe I haven't updated this blog since June! Such a slacking blogger! The Blakelys are still doing well, thank the good Lord! We have been very prosperous in our garden this summer and canned many-a-vegetable! I have pickles, tomatoes, soup starters, pears, spaghetti sauces, and so much more just packing my storage room shelves for this Fall and Winter. 

Since I have taken on a second job, I basically work full-time hours just at a more random schedule so that I remain home with my family as much as possible...makes for one tired mom, but aren't we all? Gage is doing well (as far as I know) over at the high school...yes, I said it...his middle school is all located inside the high school so he's forced to be even more independent. He has always thrived on independence and as long as he's doing well, he should be just that. He goes back for his yearly visit with the cleft palate clinic in December when we will again discuss his orthodontics, his dental issues, his possible jaw distraction for later down the road and we also meet with his nutritionist...kind of a full yearly exam to make sure he is getting as much nutrition as he can, gaining weight properly, etc. As bad as I hate the six hour appointment, it is loaded with information, so we must go.

Brooklyn is doing well in the classroom also. She is well into the fourth grade, very independent though she does still use the personal FM system. Her teacher is one of the softest spoken people ever, but she hears her very well inside the room, along with the mic. I am in and out of the classroom a lot checking since I do work there as a sub teacher, and she appears to be on task, and not really struggling with anything other than math which she has always found to be a little difficult.

The kids have friends, they are happy, they talk, they talk back sometimes, they get into trouble...but they are The Blakelys...happy to call 'em mine!

Tuesday, June 4, 2013

The Beach

We are back from the beach! The kids had fun, I had fun, the rest of the family had fun...

My big mistake? Putting sunscreen on the kids while they were wearing their cochlear implants! When they took them off, I didn't think to put it on behind their ears and BOY DID THEY BURN!! Gman isn't even able to wear one of his, it's that bad. Yes we have ways of attaching them to the shirt collar but at home, they are happy with or without.

Saturday, April 27, 2013

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!

Friday, March 22, 2013

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!