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. 💗

Sports and Cochlear Implants

Though there are many options these days for kids who hear with cochlear implants AND also play sports, I'm going to show you what works for us. The trick is to know your options, and find what works for you and your child!

My daughter is our athlete. She is going on 14 (I know!!) and has had her implants for almost twelve years now. She became an athlete in 7th grade when she made the volleyball team. Her height is perfect for such a sport and after the season was over, she tried out and made the softball team. She is learning but doing well in both sports. Her teammates and coaches couldn't be more supportive and the encouragement has certainly boosted her assurance, and confidence.

I have (out of necessity) learned to do braids. One thing at the end of the season we learned is that double braids help hold the processors on. She has long hair and the braids on each side running behind the ears are great. I wish I could braid tighter than what I do but hey, practice will help that! She bought some skinny headbands that she says help also. At first she was simply pulling her hair back in a pony tail and using double sided fabric tape directly on her processors and that worked for a while but these other options were better due to sweat causing the tape to lose its stick. This basically got us through the majority of both seasons. We now know what to do for next year as she enters 8th grade playing both sports again.

If your child wants to play sports, go for it! Let the coaches know you are experimenting with head gear options and they may even have great advice!

Deaf Child Behind The Wheel

Radio off, windows up, minimal talking and we are off. I guess I am as nervous as any other parent giving full control of a massive deadly weapon to their 15 year old child.

Truthfully, I thought the fact that he is hearing impaired would multiply that fear ten fold but so far, that isn't really a factor. He does a great job. We have had him drive at various times, even at night and in heavy rain. Next on our list is completely deaf...just down the road and back. He has to learn what it feels like so if batteries die, he don't panic and wreck trying attain his sound back. He needs remain calm, remain in control and get to where his going safely.

I think our biggest concern is (as he gets older), if he were to get pulled over, would he be able to safely communicate to an officer at a distance that he is hearing impaired. We are hoping to find something tag or window related that would state or warn of this immediately. We also have this concern (and in his billfold) that if unresponsive due to a wreck or whatever that he can't have MRIs due to the magnets in his head without first removing them.

So far, just having a permit isn't that bad. As 16 approaches, my anxiety heightens when I realize he will not want me to ride with him anymore. 😭

I Want You to Hear

Sensorineural. Conductive. Audiogram. Milestones. What are all these new vocabulary words being thrown at me and my new baby? This became our reality years ago when my first child failed his newborn hearing screening. His tiny little ears were soon adorned with rather large super-powered hearing aids. The best of the best on the market and even those floppy devices couldn’t bring enough sound to those tiny ears, to hear my voice.

Having no history of hearing loss on either side of the family, we didn’t even know what questions to ask at that point. Months passed by, then years. We introduced him to his new little sister with what little signs and gestures we had developed as our communication methods. We were introduced into the Cochlear family by our doctor as our next step toward living in a hearing world full of possible speech, language, music, and voices.

While little sister was developing her babble, her various toddler words, we were shocked to find out she too had hearing loss. She soon progressed to severe levels as we prepared to our son to undergo his first cochlear implant surgery. Our hopes were high and expectations low as our now almost four year old would either soon begin to hear the world that had been so quiet, or he would remain in silence.

Not only would he receive the gift of hearing, but his sister would soon follow in his footsteps. We had therapy as a family to learn how to learn how to hear and how to develop appropriate speech and language. It was hard work for everyone on our team but both children are in public school, playing sports, playing instruments, enjoying their friends’ laughter and not enjoying their mother’s singing.

Now Cochlear introduces their new website as a resource for parents finding themselves facing a similar situation as we did years ago. A place to answer the daunting questions that linger can be accessed from almost anywhere. Find out more about the advanced implantable hearing solutions by Cochlear by visiting   www.Iwantyoutohear.com

This is a sponsored post from Cochlear written only by me. My opinions are my own.

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

11 Years of Hearing

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




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



I need to post some more videos!!

The Problem with Hearing Kids

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

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

Speech Therapy Bags

I was recently reminded of portable Speech Therapy bags. The ones we mom of hearing impaired children have in our homes, in our cars, at grandma's, practically everywhere we go. We know kids need toys to help occupy them at those long grueling appointments and they love to play, so why not combine playing and learning? Going through AVT (Auditory Verbal Therapy) and Speech Therapy with both of my children helped me be prepared for opportunity teachings.

I have a list I have put together for some of the top 5 items I used to carry. I'm curious as to what parents carry in their therapy bags these days! You can view my list here on Influenster (click here).

We would change our items every couple of weeks or so (basically when mommy got tired of the Legos or tired of reading the same book). One thing to remember about these bags, your local thrift store can be a gold mine! Just wash the toys really well and your child will be learning for pennies! You can find great "odds and ends" and at my thrift store they bag up miscellaneous items like small figures, small doll house items, random cars, etc. which was PERFECT for us! I'd pay $0.59 for big bag of WORDS! Don't let great opportunities pass you by because you think an item is too girly for you boy or right the opposite. My daughter and I would use big brother's hot wheels to drive to all of her doll's houses! It's all about how you approach it!

I miss those days!

If you would like more information on how to be an Influenster, make your own lists, write reviews, and try free samples, CLICK HERE.

Making an Electric Guitar

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

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

Hovering

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

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

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

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

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!

Her "New Ears" Audiogram

Her last audiogram in 2013 w/her Freedoms

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

Now with her new N6's...

 

 

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

 

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

 

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

The Teenager

 

 

 

Thirteen

 

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

 

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

 

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

 

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

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?

The Latest on Goldenhar Boy

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

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

Study Day

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

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

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

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

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

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!

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!!

I am thankful they are deaf

If you had asked me eleven years ago if I was glad my first born lived in silence, I would have said no. The experts told me he would learn to speak though it would be limited and at a much slower pace, and that I needed to narrate everything I do. When I woke in the mornings we put his prosthetic "ears" on knowing he would only hear certain parts of my words but we were to spend our day talking...about everything. If I walked to the kitchen I sang, "walk, walk, walk," with every single step in hopes that one day, he would learn that everything, even motions, had names, sounds, labels. By the end of the day, I rarely even answered the phone and had to force myself to speak to a tired husband when he came home from work, because my words had been given to my child.

There were days I thought would never end and when he finally got his cochlear implant, we had to start over again. Sister came along, and we were blessed to start it once more for her so words became part of our life. I learned to describe feelings and emotions, we stopped at every tree, we smelled every flower, we listened to every bird. Eleven years have passed now and I can honestly say that I'm thankful my children are deaf.

My busy world slowed down for years as they began to grow and learn. Each day, I'd step outside my door and wonder if there was anything else left that I could give my children and something new would appear. Their little face would light up with excitement and tears would run down my cheeks as The Blessings poured in day after day.

I had no idea that The Lord was crafting me all this time. HE was teaching me how to see HIM, how to feel HIM, and how to teach my kids about HIM. HE was teaching me to write with the same words I taught my children only they became more than just words over time. HE taught me to notice everything and then translate what my eyes and heart could see. Today, I am thankful HE lets me feel. If my world had not slowed down a few years ago to absorb HIM, I would not have the relationship with Christ that I do today. He took something very close and special to me, my children, and had them teach me how to hear HIM.

Have a wonderful Thanksgiving everyone!

She needs new ears

Gman had his much needed MAPping session this past week. I was in survival mode and trying to get well from a wild form of crud that unleashed inside my head and lungs, so I'm just now feeling bloggy!

We had hoped this tax season (around March or so) that we would have been able to upgrade Brook's processors. She's had them for years and they've been out of warranty for quite some time. However, with all of Gman's surgeries, we have always had extra parts to make do if something broke. We just never got around to it and the cost of such an upgrade is very steep. Like just under three grand steep (that is just a guess-our insurance will cover 80% of an upgrade-they are just under 20 grand for two ears-but we would have a trade-in credit with two of her old processors from what I can tell...

The bottom line is that by this next tax season, we will have enough saved back to upgrade the child to new ears. That is going to be hard with Christmas around the corner but she needs them, she wants them, and she deserves them. I am very excited about it and will be praying that we accomplish this and get that baby some new ears!!

She goes in for her annual MAPping in January and we will know more about the finances, and possible upgrade at that time. Gman is still going every six weeks at this point and will be MAPped again before our Thanksgiving break. He needed lots of changes on both ears this time, and he did so well...he actually earned a prize!! Blakelys never earn prizes there (they just give up) so that was a real treat!

We are torn between going to the 300th cochlear implant celebration next Sunday with The HEAR Center to the ever-so-awesome McWane Center or the Pumpkin Patch with our church. We signed up for both and if it rains we have decided to attend the science center (my kids have been recently already) and if not...Pumpkin Patch here we come!