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.

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.

BAHA ~ Bone Anchored Hearing Aid

I met with the new ENT yesterday, and was very impressed by his plan for Carter.  He thinks that it would be a good idea to get Carter started on a BAHA implantation during his next surgery.  The doc thinks that even if Carter has perfect hearing in the left side, it would be an advantage to him to have this placed as well.  So far, Carter would be the perfect candidate for this procedure, but we won't know for sure until after the big hearing test next week.  Here is a link to the information about the surgery: Bone Anchored Hearing Aid .  If you scroll to the bottom, there are pictures to give you an idea of what it looks like.  There is one little negative to this which would be that Carter will have to wear a very soft headband to hold it in place until he turns 5 years old. It's not as bad as it sounds, and I wish that I could find a picture online, but I can't seem to find one.

I also talked with Carter's Pulmonologist today.  He's been doing much better since the steroids, but still struggles at times.  I explained to her what he was doing, and she's decided to put him on an inhaled steroid.  It's a type that they typically give to Asthma patients and will be administered through a puffer with a spacer.  Hopefully this will help him.

Not much more going on.  Carter's been giving his Daddy smiles all night which Michael is just loving.  He's also increased his feedings from 80 ccs to 140 ccs (which is a little over 4 ounces). Holy cow!  He's really starting to pack on the pounds now!

Carter's Little Room

Carter's Occupational Therapist thought that a "little room" would be beneficial to Carter developmentally.  It is literally a "little room" that makes Carter feel safe in his environment while giving him a lot more feedback because every movement he makes will echo throughout it.  One of these can cost over $1000, but my very handy husband built him one and the best part is that it only cost $50!  We've been trying it out a lot the last few days, and I must say that it truly does work.  Typically, you would hang toys from the top for a baby with vision impairment, but for Carter we've been putting toys near him that he can hit.  Sometimes we put it over his play place as well.  It is sitting on top of a resonance board that his vision specialist brought which creates even more noise. The idea is to get him to start realizing that he can make things happen when he moves those little arms and legs. Here's a link to a website that gives detailed instructions on how to build one: http://www.wonderbaby.org/articles/play-area.html#how-make , but for the record.... Michael made up his own plans.  I just have to give him props where they are due :)