Cochlear Implants and Sports

So it's been a while, like a year, since I've updated on the Country Kids with Cochlear Implants. That's probably because I've gotten distracted and lazy and almost forgot I even liked to write during school "season" Brooklyn keeps us busy with her sports. She does well in school socially, keeps good grades, and is an athlete. She continues to play softball and volleyball each year and now that she's moving up to high school level, being in the 9th grade now, she'll be in the "big leagues" so to speak.

She has completed softball for the year and her team had a really good season with less than a handful of losses, and so begins volleyball. She will start workouts with the older girls upon her return from the beach and she really likes that part. She may groan and complain but she likes the feel of a good workout.

She finally got rid of the braces and the glasses and she looks forward to her first volleyball season without them! We continue to use double sided fabric tape to help secure her processors on her ears. This is her preferred method now, she gave up the small headbands but they could make another appearance when her first volleyball game rolls around who knows.

She still loves music and uses her over the ear headphones the ones that cost a small fortune or the higher quality ones at Wal Mart work just as well. Hopefully it won't take a full year to update on my two kids with cochlear implants! We wouldn't want you to think they are boring, they keep us full. 💗

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

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.

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

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....

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!

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.

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!!

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!

He's 60

For years this same art lady has been at G's annual appointment at this clinic in Children's Hospital. He loves seeing her because that means that the four hours he spends in there, won't seem like four hours...and I can't imagine sitting in there that long without the art lady!

This is sort of a review by a team of people including a dentist, surgeon, nutritionist, social worker, etc....that's why it takes so long. So what did we find out?

He's four feet five inches tall and he's 60 pounds!!! Finally. We waited years for him to reach 20, then 40, and now at 11 1/2 years old, he's sixty pounds.

The plan is the same for his mouth. No orthodontics yet because he still has baby teeth in the back, keep up with the dental work (regular cleanings, etc). The dentist will sort of get us by with partials (later on) and whatever temporary magic solutions he has to keep him eating and chewing properly until he reaches age 17 (or there about). We need to let him grow as much as possible before breaking out the big guns...which may include jaw distraction (lengthening one side of his jaw to match the other side), braces, dental implants...a whole lot of work! But for now, we deal with what he's got and be thankful he does have some teeth.

He goes Tuesday for MAPping, which he needs desperately! He is struggling at home to hear/understand what we are saying so I know he has to be struggling at school. He's such a good speech reader though, he manages well...another reason to be thankful.

Cutting the Cord

It goes without saying that I love my kids as much as anyone else loves their own...


...but there comes a time when you have to cut the cord. We've worked awfully hard to prepare our kids for the world, and we've worked awfully hard to prepare the world for our kids, so by this age, they have to learn to solve many issues on their own. I will be here for as long as I can to help them when they can't, but there comes a time in everyone's childhood when you learn to face things such as misunderstandings with friends and teachers (hearing loss or not) without Mom having to spend all of her energy every single day worrying about the kids. I have put my trust in the "raising" I have given them and hope that even when they do make mistakes, misjudge, or find themselves on the receiving end of the misjudgement or misinterpretation, that they can talk things out and clear up the wrong.

I have one child that isn't scared or afraid to clear things up, even with adults but she gets mad quick if people don't listen to her so that's what we are working on with her...staying calm, even when the hearing don't listen. I will gladly step in after she's tried her best to resolve issues and I'm very glad she has a strong personality and isn't scared to 'fix' things.

I have another child however, who will only do this to some degree, then he gets scared and runs to me..."write my teacher a note and tell him..." he says. I finally told him one day when he was accused of misbehaving in the bathroom (which is not really characteristic of him, but he's 11-and I live with him, he's capable of anything!)..."No. I can't go running up there or write notes and emails for everything little thing you face. If you are scared to talk to him about it, YOU write a note." I let him know that it's okay to apologize to someone, even if you aren't in the wrong. If they think you are, apologize and move on-forgive them and hope they forgive you...there is a much bigger picture. Sitting around worrying all time about every little thing isn't fun, isn't productive, and according to The Bible, isn't very Christian. You give your worries to The Lord and the trust and faith you have in Him should be enough to move on. I have to remind myself of this too sometimes. It sure feels good though when you've truly let go and let God.

So he wrote a note. It said something like, "I am sorry you got upset with me yesterday. I do not play around in the bathroom, I handle my business and get out..."
It went on a little more but that's what it took for him to move on. Everything was fine, and he didn't have to sit and worry about it anymore. They are growing up...so fast. But so glad they are starting to solve some things on their own. It takes a tremendous weight off of me as a mom. I'll always worry, but giving them coping skills is a benefit to us all.

The Hungry Child

playing on the cabin's porch

So we are faced with our ADHD challenges as we begin this school year, along with his troubled hearing. He seems to be okay as far as hearing in the classroom, his teacher is male and has the perfect LOUD and STRONG voice. However, I did get a note about his staring off into space and looking around the room (which that one could be hearing related I know). He's given up on the FM system and relies on mapping alone, which is scheduled for the first week in October. I've had my concerns over the last month that his medication wasn't handling his ADHD as well as it used to so I'll have to keep a watchful eye on that situation.

He still isn't gaining much weight and hasn't crossed over the 60 pound mark yet...and he's eleven. He does eat at least one breakfast (bagel w/Nutella or something hearty) before he gets a bowl of cereal and then he sort of snacks for lunch. He barely eats dinner but does another snacking meal instead and by bedtime he's famished. He stays up an hour or so after I do eating anything he can grab (after I've fed him several hearty things before I turn in for the night). I got up at ten last night after I saw his flashlight in the kitchen. He had found something to eat and when I woke this morning there was a note that said, "Val, fix me a bagel AND a bowl of cereal first thing in the morning! I am starving." I felt sorry for him so I'll have to make sure he starts eating the hour prior to me going to bed, because Mama just can't stay up late, I turn into a monster after 8 p.m.!!

School updates

So we've completed two weeks of school and getting ready to start our third. Gage is still having trouble understanding (there's a difference between hearing and understanding) but seems to be doing good in school. He loves how interesting his teacher is and comes home repeating lots of great stories. His teacher is male and has a very loud and deep voice so he doesn't seem to have as much trouble hearing him as he does us at home.

Brooklyn's teacher still hasn't started school unfortunately. She started having issues right before it started and turns out she has MS. She is trying to gain her health and strength back to come in and begin her year so we will say a little prayer that it happens soon, we want her in the best health possible. She is such a kind/sweet young lady. So starting the third week, B will have her third teacher. Hopefully this one will get to stay until the regular teacher returns because it's hard for the kids to understand each preference for each teacher and learn their lessons at a consistant rate (especially when we have to train each one with the FM microphone, etc. and try to get used to each changing voice). But Brooklyn is a champ and is doing way better than I probably would.

I have been busy subbing already. I've been at the local Trade School, the elementary and the high school and tomorrow I go back into the high school again. I look forward to each job since I get a variety of kids who all seem to teach me as much as I teach them (probably more). The down side is that I see needs. There are so many children (at all ages) who don't necessarily have the basics covered. It saddens me, it strengthens me, it burdens me. We don't really have a lot either, but if my kids are hungry, it's a choice. I may not have a full pantry at all times for them to choose from a full menu of items, but there is food in my pantry. There are children who would love to have oatmeal for breakfast on a Saturday, despite being out of Cocoa Pebbles. We are Blessed and I see that every day.

Week Two

We've started week two of school already here in Bama. Gage is having a difficult time hearing, we're having some issues with one of his processors changing/turning up when you slightly touch the side of it...he's already been kicked in the head (on accident, at PE again-what is it w/these boys?) but so far no issues have resulted from that.

I'm guessing if he doesn't improve (modify classroom/accommodations) then I'll have enforce the FM microphone system that he DOES NOT WANT TO WEAR ANYMORE!!

Brook is doing quite well. She's using her FM system, her teacher unfortunately had fallen ill unexpectedly and she's hoping to come back at the end of this week, so she's had a sub so far.

We went camping this past weekend and had a wonderful time as usual. The kids brought their bikes, they swam, and they fished. One of Brook's processors had issues though and it needed a new part (which was at home) so she had to go a full day with just one "ear". She hated it...but made it just fine.

Other than that, we are just enjoying ourselves. We love our friends, our family, our school, our church...what more could you ask for?