Saturday, August 15, 2015

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!

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Saturday, July 18, 2015

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.
video


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)

video



Sunday, July 12, 2015

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!

Sunday, July 5, 2015

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.

Friday, July 3, 2015

Brace Yourself

After years of anticipation, guess who will be getting braces next Saturday?
That's right, this guy! We tried for over a year to get insurance to pay for them since it is medically necessary per the dentists, and orthodontists that we work closely with, BUT since he does not have a cleft palate, we got a big fat no! Goldenhar Syndrome has left his mouth with its share of challenges and we are not sure yet how long he will wear the braces but we'll see how it all goes.

We are moving teeth around to fill in the gaps where no adult teeth are present. Then, the dentist will be able to shape what he does have and after that he'll be ready for dental implants. Since dental implants can't be side by side, we must move teeth around first so that they can be placed sporadically. He has a long road ahead of him with orthodontia but by the time he graduates high school he'll be so glad he did it! ((He is less than excited))

Thursday, July 2, 2015

Wanted...

video
...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.


Sunday, March 15, 2015

Regional Tech Fair

One proud Mama alert...
Never in my wildest dreams did I imagine this high-tech kid would be standing in front of judges presenting a project about her cochlear implants. She and her friend/partner decided to do a project about B's ears and how technology helps her hear and the impact it makes at school, including her friends' point of view and how her peers play a role in her success.

These girls were asked many questions, they answered confidently, and brought home first place medals......next month, the are to present their project at the state competition!

Thursday, January 22, 2015

Big Boy

In person, I know he still seems small for 13, but today at his annual appointment to see the CRS team consisting of a nutritionist, social worker, a team of dental experts, etc., they were BLOWN away by his growth spurt. Even more remarkable, this spurt actually happened sometime between May and November because we had other doctor visits in between to do weigh-ins....He has never been above the 5th percentile and today.....25th percentile!!! He has grown nearly 4 inches and gained 19 pounds in that time frame. It sparked their interest in Goldenhar Syndrome and several declared they do some more research on the subject.

The difficult news...medically, he needs lots of Orthodontia. He can't even eat corn on the cob, bite into apples, and lots of other things he don't eat because of his missing/malformed "teeth" called pegs. However, according to the widespread changes in the recent medical insurance coverage....a certain code doesn't fall under the "qualified" category anymore since he has Goldenhar Syndrome and not a cleft palate. His face is crooking more and more and will affect his upper face soon including around his eyes...it is expected the skin of one eye will begin to pull down and around toward the short side (right) as he continues to grow. He still will need dental repairs after Orthodontia and then the jaw surgery to follow in just a few short years to lengthen that short bone.

They are resubmitting paperwork in hopes to get it passed as necessary and not cosmetic for the common crooked teeth. We will sit back, and pray it works this time! We are just glad to have him, and we'll take it one day at a time. He sure is a fun child, and we are Blessed as his parents.

Tuesday, November 11, 2014

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!


Wednesday, August 20, 2014

A Blakely Update

Not a lot of posting from the Cochlear Kids as of late but we are in full swing here in Alabama public school. Gage has started the 8th grade and is doing well so far. They are beginning to read The Giver in English class. He was also assigned Music Class and despite his initial thoughts, it will be a true asset to him in the future if he wants to play guitar. He picked it up a few short weeks ago on summer break and with a few chords from his daddy and a few from a cousin, he's learning...

Brooklyn has entered the 5th grade. She is still with me everyday since I work at the school full-time now. She will leave me after the 6th grade and go over to the high school with her brother. Her N6s are still doing fabulous! She loves her chickens which will start laying eggs within the next few weeks!

We love it here on "the mountain"...the world moves a whole lot faster than we do but we wouldn't change a thing!




Saturday, July 12, 2014

Her "New Ears" Audiogram

Her last audiogram in 2013 w/her Freedoms

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

Now with her new N6's...
 
 
She still hears very well with her CIs but can hear clearly at 5 db in the sound proof booth. That's a soft whisper!
 
We all know that in any type of noise that will dramatically decrease her ability to hear speech but we are very pleased with her new ears and the main thing is...she too is very pleased with them and that's the most important!!
 
She will be starting 5th grade on August 7th and as her team leaders, we have agreed that she can try the classroom(s) without her FM. She does NOT want it and this is the same grade Gage quit using his as well. We sought the advice from her Hearing Impaired Teacher and she agrees we could give it a try. If she needs it, we'll give it back to her no problem. I work at the school so I'm just a short walk away if she needs me.

Saturday, May 10, 2014

The Teenager

 
 
 
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.