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

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!

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.

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!

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!

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!!

Pumpkin Patch

So B is down to one "ear" inside the classroom. Both of her processors are working fine but part of her FM system is out for repairs so she has to make do with listening to her teacher via one ear until the other FM battery cage is repaired. It shouldn't take long so hopefully next week or so, it'll be returned.


We took the kids to the Pumpkin Patch with our church yesterday, they loved it! Even my Gman who is too big for all things childish. They had a band, they had food, they pumpkins, they had hay rides and huge jumpy things...My kids didn't go in the enclosed jumpies but they did do the slides.

they were supposed to make silly faces

When I Am Deaf

As we get the news that our children are deaf, many of us sit back and try to figure out how in the world they could mistake our child who obviously can hear, as a deaf child. One day, as reality floods in with the tears, the sadness, the heartache, the worry, the guilt, we accept the news and move on...because we have to. We educate our ignorant minds and realize that we are never going to be like other families, other parents, other mothers. Some of us eventually realize that what they were born without, can be the biggest gift of all...

Throughout our early years of parenting, we are forced to place ourselves in our children's shoes. We enter a grocery store and realize that our voices can get lost in the wide open space so we move in close to our children when we speak so they see or hear us. We know that midnight storms will not wake our kids because of the loud howling wind, but we pull their curtains tight so the flashes of lightening won't startle their little eyes and hope the deep booming thunder doesn't shake their cribs. We repeat questions for them when their big blue eyes roll over to our direction without them even asking because we know they didn't understand. Also parents of deaf children, we learn to feel, in more ways than one...

When we started going to our little country church, one of the first things I did, was feel for the service. I knew that if I could feel HIM, without seeing or hearing Him, it would be the right place for my kids. Some of THE BEST church services have been when I am deaf...

There have been times, when I am deaf, that I need to close my eyes completely to simply absorb what's around me. If you keep very still, that preacher's voice can reach right up through the bottom of the pew and grab you by the gut so hard your back arches over to slump as you begin to pray. Sometimes, when I am deaf, I am led to Altar, only to find it so crowded that I stop right beside the piano. On bended knees I'll reach up and with outstretched fingers, I'll feel the music as the pianist pounds ivory keys which seem to strum right into my heart. Sometimes, when I am deaf, He begins to show me things that may not matter to anyone else...but to me, it's Pure, it's Golden, it's Richer than anything I've ever received...yet the only price I paid for it was Believing.

Being deaf sometimes can be a true Blessing, and I am thankful for the times He lets us feel. I don't always listen despite having two functional ears and I don't always see though my vision is clear. But I know how to feel.

IEP Number One

I wish everyone's IEPs were as easy as mine are...but I know lots of people have to basically fight for every little thing. This year is the first time I recall them getting input from Gage. I know I had asked him last night if there was anything he needed for sixth grade and he said, "YES! I have got to have more P.E. time. I mean at least fifteen more minutes! There's just not enough time right now!" Apparently he mentioned that to them too, listing that as his FAVORITE subject (such a boy).  

They will not test him for Gifted as it has been postponed for too long (he was referred in second grade) but now his SATs scores from the past few years weren't high enough for them to consider him (even though he did earn a medal for his scores!) He had surgery after surgery causing him to get delayed each year. So, I'm guessing I won't be satisfied until I know his IQ score which means I'll probably pay out of pocket and have those done this summer by the Psychologist who tried to test him before (when his ADHD was so bad and he couldn't even finish the testing) The good news is that his ADHD doesn't seem to be too bad right now so his meds are still working!

He basically has a similar IEP to last year, he needs his special equipment (static-free computer mat, FM system, cochlear implants) and he'll stay in the classroom except for ARMT testing which will be done in a quiet small group setting. He will not be testing on any movie that doesn't have proper captions and he won't be testing on material given over a pre-recorded device unless exact reading material is furnished that can be read while it plays. And no paddling without calling me first (shouldn't be an issue)

I shouldn't have any issues but if they do pop up, I'm certain his sixth grade teachers will be glad to get with me and we'll work to resolve any of these matters. She also asked me a quick question about his next year's IEP when he'll be going over to the high school. I almost started crying. I don't even want to think about my baby going over there!

I have got to get him in to see the Audiologist soon. His teacher stated that he's having a terrible time right now and is lip reading heavily! So I'll be scheduling that asap.

Now Brook's IEP is next week so hopefully her's will go as smoothly!

Blakely Updates

Can you tell it's tax season? I am usually a substitute teacher so I'm used to having off days which I use to play blog catch up but those "off" days are filled at the accounting office this time of the year so I rarely see them anymore. I'm usually at one place or another. I have just a few quick bullets for the Blakely kids and more on the way later...

• Brook will be performing as a Chipette tonight singing "Single Ladies". Yes, my deaf child will dance with her two buddies from church to music that she has been gifted to hear, and sing with a voice that God chose to give her even though He didn't have to. I hope to capture it on video and post a small section of later!
• Brook's FM mic is still out. She needs it, I hope it comes in next week so she can hear better in the classroom. She is doing fine without it, her teacher is fantastic but she needs her mic.
• Gage doesn't use his mic. I'm gonna talk to his Audiologist and see about changing his mix when the mic is on. They do a lot of class participation. He can hear his teacher fine, and clarity is much better with the mic. However, during class discussions or when someone else answers or asks a question, he can't hear them due to the mix on his processors. We have always had it set where the teacher is prominent and background is highly reduced but we are at a point where we need a more even mix so that he gets equal parts teacher and peers.
• He goes in a couple of weeks for Mapping again. He's always went monthly but we didn't have a Feb. appointment set up so he goes in March. He's already starting to need it too. For some reason, maybe his ear malformations, he can't "hold" a good map for more than five weeks. He never has. He's always went in monthly for mapping since he was three. Brook is at a point where she can go practically yearly, and for the common ci user, this is probably average at this point. She's had her's for 5 years now.
• Otherwise, the kids are doing great. They are talking, screaming, fighting, loving, "going out" with people (lol), hanging with friends, singing, dancing, riding four wheelers, going to birthday parties....basically the average kids.

The Church Festival

We had so much fun at our church Fall Festival. I'll just have to give it to you in pictures. We had so much fun and are so glad our friends Brenda and Roger invited all the church members to come out to their land to enjoy it's space and beauty. As you'll find, B finally grabbed a mic, she's very self-conscious about singing in public...she wants to so bad but she's still timid. She understandably has a harder time learning the words than the other kids in church but she keeps trying! That's my girl. You can see her looking at her friend for guidance.

Her very best friend in the whole wide world!! Could she look any happier?

Don't forget my other blog-I write on it mostly now...The Road (click here)

No more ear tune ups for my kids!!

That's right. I've made an executive decision to not take my kids in for MAPping anymore! No more ear tune ups!

Apparently I sound much better when I sing pre-tune up since no one makes fun of me, shames me in public or shakes their head angrily at me BEFORE we go to audiology.

Afterwards however, this is what I get...

...and this is when I was singing just like Beyonce. Nope, no more ear tune ups if they make me sound this bad...

Bullet Updates

Just a few quick updates on the Blakely Folk

• The kids love Vacation Bible School-who knew that I'd reach a point in time that my deaf children would simply go up with the other children in front of lots of watchful eyes and sing songs (correctly) without any intervention from me? I prepped the church none and tonight is the big finale...can't wait!
• Brook saw her pediatrician about her foot. If this last oral antibiotic doesn't do the trick we'll have to see a surgeon who will either put her on IV antibiotics perhaps or do surgery. Surgery will be the most likely solution to make sure no other foreign objects remain. Let's just pray the meds work and we can avoid an additional surgery.
• Brook is still scheduled for tonsil/adenoid removal on July 27
• I am helping coach cheerleading ages 8 and under. We have 20 to 23 girls, this should be fun! I am currently working on a dance routine, my jumps (since I'll be in charge of jumps at cheer camp-for all ages up to 12) but my cartwheels still ROCK! lol-I think Brook is going to love cheering!
• Gage is doing well, no weird symptoms, problems or anything to speak of. His ADHD meds are working fine, he has MAPping again on Aug. 5 and SCHOOL STARTS ON AUGUST 15 !!
• I need to get back to the gym.....seriously!

Updates 2/15

Just some quick updates for the week-

• Brook is madly in love with Justin Bieber-she's singing his songs, watching him like a little stalker on the Grammy's and YouTube...
• No symptoms w/Gage and his 'infection' signs...no itching, no swelling, no pain since that first week we were on meds...so they are helping!
• I am still subbing on occasion and working at the accountant's office some as well so I've been busy-hence the lack of blogging-my spare time is spent at The Gym!
• We are suspecting Gage's ADHD meds are not doing their job as they once were. We will make that decision after he finishes all the other meds he is on, just in case they are interacting and making his ADHD pill less effective...?
• Gage's FM system is down at school (another reason to hold off on making the ADHD call right now)

But warmer weather up ahead here in Bama and that makes me ready for Spring and then Summer vacation!!!

Feeling Justin Beiber

This is how a deaf child "listens" to Justin Beiber when she's already taken her processors off for the night...

HELP ME!!!

Don't forget, my other blog "One Brick Shy" which can be found by clicking the photo in the right column or by click HERE. I post my insanity over there if you are interested, lol.

Nothing new on Gage Man, Horray! No symptoms at all this week!

Kenny and Dave

I know I say this every time we receive a cochlear implant, but once again, I've threatened asked our doctor to please not retire til Gage is at least 18 ! Again, he's given this child something, he did not have.

We know how much Gage loved being bilateral and when one device went a little haywire and could no longer be mapped for his needs, he began to struggle to keep up with basic conversations, especially in school. He quit listening to his music as much and we noticed a definite change. He participated in less conversations and I'll be honest, Gage not talking much is just plain weird!

Some of you don't know how important Kenny Chesney is to the child, but even I began to miss the country singer blaring from his room "I'm Alive and Well" along with Dave Matthews...

Well he's back, and some may remember he had his new device turned on Tues., wore it for a few hours and went back to the O.R. on Wed for some minor repairs to his incisions. It was Friday before he really began wearing his new device on that side, and WOW, after a couple of hours he asked me to 'move him up' to the next program. I did and soon after he ran up to me while he was doing some school work (at home) and said, "Mama, I hear something, plain as day, what is it?" He was all smiles and tickled that he could hear with just this new device! I go into the "silent" room and listen...tick, tock, tick, tock. I told him I heard the clock and he looked up at the kitchen clock, knowing that was it. "But wait! I hear something else, is it the washer? the dryer?" I knew I wasn't doing laundry (lol) and I listened some more. TapTapTapDripDrop...."Oh, you hear that leaking shower head in the bathroom!" He laughed and was happy the mystery had been solved.

I left him home with his Dad Friday and I visited the school to turn in work, and volunteer at Brook's Fall Festival. I left my driveway in tears. I mean, how blessed have we been? It's not so much that he can hear better and he'll do better in school and he'll be able to keep up with conversation...it's that he can hear better and he's so happy & excited about that. It's not the material part of receiving a hearing device that makes a deaf child hear, it's the emotional part, what it gives my child aside from sound. It's that giddy excitement on his face when he runs to his room to listen to music or the restored pride he has when he can follow along and not get left behind after a couple of sentences. He himself is more alive and well, and Kenny Chesney & Dave Matthews are rockin' in the Blakely home once again!!

He also told us yesterday (he's on his current final program for this set) that there is a delay when he removes his coil. He says he can still hear a few seconds after he removes his coil on that side. He can't understand what he's hearing but he swears that he can still hear some sound about 3-4 seconds after the coil is removed. He was being silly yesterday and shouted, "Yay, I'm not deaf anymore!! WooHoo!" as he ran through the house cheering. His brain had convinced him he could still hear sounds. But I removed the visuals, made him turn backwards and not look at what was going on, and he seemed less assured he was hearing w/no coil. Not meaning to rain on his parade but I wanted to know, he almost had me convinced!! lol

He's doing fabulous and he will return to school either Tues. or Thurs. this week (we have appts. on Wed) and next week he goes back to the O.R. to get these final stitches removed and cleaned up really good and we'll be back to our regularly scheduled program...

Our Home Away From Home

We visited our wonderful Children's South ENT first today to discuss Monday's surgery for Gage. Not a whole lotta discussing, Gage knows what's up, I know what's up, Doc knows what's up, this will be his third surgery on his right ear as far as ci's go (not to mention all the tubes, 'plastic' surgery and whatever else I'm forgetting). I did ask if he thought it would be about four hours to remove the non functioning ci and put the new one in and he said that likely it won't take that long. I guess since the drilling has already been done, he's hoping it'll be a slip out slip in type thing but yes, he was scheduled for a four hour O.R. time just in case.

We then moved over to the hospital (our home away from home) and donated the blankets my grandmother made. She has been fighting breast cancer in recent years and she's ran out of grand babies/great grand babies and even great great grand babies so she has been so kind to donate these adorable blankets she makes to the NICU unit at Children's. Gage was happy to hand them over this afternoon and on our way out, he found not one but two lucky pennies on the ground. I suggested he keep them til Monday when we come back for his surgery and then place them in the donation tubs inside the hospital, making a wish on each one. He was so thrilled over these two pennies.

Saturday, I will take him as promised to the thrift store, his favorite place in the world and buy him whatever he needs to make his custom vehicles for the next two weeks while we are home, NOT riding four wheelers & NOT going to school in hopes we do not get bored out of our mind! Wish us luck, only a few days away. I asked him on the way if he was getting nervous about surgery and he said, "No, uh look Mama, my friend Hayden lives there."....so there you have it! lol, Will be updating Facebook throughout surgery on Monday so that's where you'll find pics and the latest news.

p.s. He is really looking forward to hearing his teachers, friends and music better soon.