New Headbands

I got sick of the Aunt Jemima look.  The last straw was when Carter's Occupational Therapist came in and asked how little Carter Jemima was doing today.  OK, he said it in the most loving way, but I knew it was time to move on from the denim headband.  So, we went from Carter Jemima...

To Carter Barkley

Here's the thing with Carter's hearing aid.  Not many people use this type. I think that his Audiologist said that less than 2% of people do, but in Carter's case of small or missing ears this is what we have to use. There is one website that makes headbands, but they are $25 each and there aren't too many color/print choices.  I'm not so much into putting fire truck fabric on my kids head. I decided to try out some adult headbands, and this one was on clearance, so it was my prototype.  No worries, I'm not going to let the kid run around with a big ol' NBA logo on his head.

Want to see how his hearing aid even works?  I realized that I never really explained it before.

Here's the first part of his hearing aid.  It is called an Oscillator.

This sits against the bone behind Carter's left ear (his good ear).  Basically it vibrates the bones behind his ear and sends sound straight to his inner ear.  His left ear is abnormal somewhere in the middle ear or in the ear canal which causes his hearing loss on that side.  On the right side (where he has no ear), his ear has no ear canal, but does have an inner ear.  The cool thing about the Oscillator is that even though he only wears it on one side, it sends info to both inner ears.  I have NO idea how that works, but it does so just roll with me on that one.  When you try it on, it sounds like you have a little radio inside of your head.  It's kind of fun.

The Oscillator is connected to a brown cord that I had to string through the inside of the headband to the hearing aid which sits on the front of his forehead.

I had to cut a hole to tuck it in. This is just a traditional hearing aid that you typically wear on your ear.

This one is like Carter's except it doesn't have the ear mold that sits inside the ear on the end of the white.  Carter pretty much uses his hearing aid as a microphone to send the sound to the oscillator.

So, to make the headbands (just in case someone ever needs to make one), I had to cut it and hold it up to his head to make it tight enough to hold the oscillator to the bone. Then I sewed it back together again. The rule of thumb is that it should leave an imprint on his skin when you take it off.  I try to change the position of it every day to be sure that he doesn't get any sores.  Next, I had to sew a tiny piece of velcro on the inside to hold the oscillator in place.  Finally, I cut a tiny slit on the inside of the headband where the oscillator comes out, and in the front where the hearing aid sits then feed the wire through. They only take about 10 minutes to make, and I got him all kinds of colors. Honestly he seems MUCH more comfortable as well.  The only problem that I can see is that it may get a little hot in the Summer. I'll tackle that problem when we get there.

Here he is sporting his new Under Armour one.  What a little stud muffin!

I tried out the Exersaucer for the first time in a few months.  He started out awesome.  Look at him all nice and straight.

Then after about 4 minutes he looked like this.  "Hey good lookin', whatchu doin'?"

Then by 8 minutes he had given up

I'm thrilled with the fact that he lasted that long.  He's been grabbing things more and more.  I can't believe how far he's come with it in just a few days.  The Occupational Therapist had the idea to attach bells to each of the toys that hang on Carter's play place to make them more interesting.  Brilliant! Carter's all about making noise.

Thank You Lord

I didn't expect much from Carter's hearing aid.

In fact, I expected him to be very upset about it and not tolerate it.

I was WAY wrong.

I just played with Carter for the first time since we've been home, and he is a COMPLETELY different kid.  He's actually looking at me when I talk to him and not looking all around me.  He's smiling easily at everything I say.  I am floored.  Seriously, floored.  We are very thankful today.

Do You Hear What I Hear?

It's here!  It's here!  Now, Carter can hear!

The headband isn't nearly as bad as I thought it would be. It ended up being all denim without stripes (thank goodness!)  He looks a little like a pirate to me.  I'm definitely ordering some different colors, and Grandma Sherie needs to get hard at work sewing him some new ones as well.

Carter reacted much better than I thought he would.  He just sat very still and tried to figure out what was going on.  He's been very happy since we've been home and just seems to be adjusting to his new sense well.  We got to try out the bone oscillator, and it just sounds like he's listening to stuff through a radio.  I'm actually pretty impressed with how well it works. 

I'm hoping that this really opens up a new world for him.  I'm patiently waiting to see what happens.

Notice the guitar shirt in celebration of being able to hear music and Bon Jovi's new album.

Mikey had his parent teacher conference today.  His teacher says that he's doing great.  She noted that he's a very hard working and shy little boy.  I'm not sure that we were talking about the same kid.  *sigh*

Orton Hears A Who...

Strange title for a post huh.

We're watching the Broncos game while Michael paces back and forth yelling at Kyle Orton to put a drive together. It brought to mind the fantasy football team name that Michael came up with and hence the title of my post was born.

I found it a little ironic since tomorrow Carter *should* be getting his hearing aid.   I just might lose it if the Audiologist calls to postpone.  I'm ready for our two month break from doctors and appointments to begin.  Only therapies at home for the next couple of months once we get this one under our belt.

Mikey is feeling much better.  In fact, he's been driving me crazy today with all of his energy.  Thank goodness he can return to school tomorrow.

Wish us luck tomorrow, and hopefully I'll have some pics to post of the denim and white headband!

Hearing Aid

We've had a couple of busy days .  Yesterday, Carter had a repeat of his hearing test.  We found out that he has no hearing in the right side (which is no surprise), and still a moderate hearing loss on the left.  We did find out that the BAHA hearing aid actually would work very well for him. We decided to not go with the actual BAHA, but a similar product that is literally about 5 times cheaper but works just as well. It's called a bone conduction hearing aid.  The problem with the traditional hearing aid is that it didn't seem to fit in his tiny ear very well.  This bone conduction hearing aid is a little device that will sit behind his left ear.  It is connected to a small microphone that will pick up the sound which will vibrate the little device and make Carter hear.  Obviously this is the very basic explanation of it because quite honestly I don't really get how it works.  The really cool thing about it is that it will give him normal hearing in the left ear and a mild hearing loss in the right even though he'll only wear it on one side.  Again, I really don't get how it works but it does so that's all that matters. The only negative (and honestly... it doesn't matter), is that he'll have to wear a headband to keep it on.  Here's a link that shows an example: Head Band .  Hopefully Carter will look a little happier with it on then that model.  So...to all of you sewing/crafting friends out there, you need to help me come up with some cute ideas for the little guy.  The band that he's getting is denim which could be cute except that it has white stripes on it too. That's just a little too much for me. We're already thinking that some hats would work.  Now, he won't have to wear the headband forever.  Just until he's five when he'll get a BAHA surgically implanted.  That's probably about the time that he'll get his prosthetic ear as well. Did I mention that he's getting his hearing aid on November 3rd?!  Yeah!!

We also had a visit with Opthalmology today.  It was just to check his right eye to be sure that it wasn't being compromised from being open all of the time.  The doc said that it looked wonderful.  He also said that he thinks it's a great idea to have the eyelid weight put in during his next surgery.  Hooray for that too!

I'm so happy to say that today was our last appointment at the children's hospital until January.  Keep your fingers crossed that we can keep Carter healthy through the Winter. We do have a sleep study tomorrow, but that's at the doc's office.  He has his follow-up for that on November 5th when we'll find out what the plan is for Carter's O2 needs. Then we are done until January...unless the doc wants another follow up after that. 

Carter's been such a stud lately.  He's smiling at EVERYTHING.  He's so aware of his surroundings and munching on his hands.  I love watching him grow.  It's exciting to think about what it will be like after he gets his hearing aid.  Here's a few pics that show off his little smile.  This kid cracks me up!

ABR

Carter had his hearing test today.  He was supposed to be asleep for this test, but of course refused to cooperate, so they started out trying to do it while he was awake.  Since everything took a long time with him being awake, we were only able to do the left ear.  We found out that his hearing hasn't changed much since the last test meaning that the fluid in his ear wasn't a factor in his hearing loss.  The Audiologist tried a version of the BAHA on him, and we found that Carter's type of hearing loss wouldn't be helped by it so it's out the window.  Basically, the plan is to try the test again in two weeks when we can do the right ear as well and then get him fitted for a hearing aid.  Michael and I are ready to get him into one so we can see what kind of progress he'll make once he can start to hear a little better. 

Tomorrow is an appointment with the Dysphagia clinic.  It is a team of doctors including a dietician and feeding specialist to help Carter progress even further with his feeding.  It all seems a little overwhelming to me, so I'll be glad to have this one over with.