Wednesday, August 6, 2008

Happy Harlie

Today went great. Harlie is her happy self. As if yesterday never happened. She is doing great with putting things in her mouth.

Speech Therapy

Beth, our speech therapist, seemed really pleased. She showed me some mouth exercises to do on her. They are basically the same ones we did prior to her jaw surgery. Now that Harlie can open her mouth - wider than she ever has - we can see a lot more of her tongue than ever before. It is fascinating, really. I find myself trying to look inside whenever I can.

Keep in mind that Harlie has never licked her lips or moved her tongue, really. For her whole life, her tongue has been rolled toward the back of her throat. She's never used it to move food around, or feel toys. So, as a muscle, it is VERY weak.

So, Beth did some tongue tapping to see if she could trigger a tongue reflex. Basically when you put something in your mouth, the tongue should find it. The first time she did it, Harlie's tongue didn't move. Just as Beth expected, considering she has never really been able to move her tongue. The second time she did it, Harlie moved her tongue towards the object in her mouth. Beth said sometimes that can take a month of therapy - and Harlie did it the second time!

The best part is that she is so incredibly tolerant. After 9 weeks of no stimulus, you would think that she would be way over-sensitive, but she's not at all. No gagging or anything. And tonight, I went on ahead and got out the tooth brush, and she went right to it, as if there was never a break. We are all very excited about all of this!!!

Auditory Brain Stem Response Test (ABR)

Basically, her ABR study yesterday offered us NO insight whatsoever. It was a big, fat waste of time and effort. In the most basic of summaries - the audiologist said that Harlie has mild hearing loss in her RIGHT ear (her good ear). I was very unpleasantly surprised at this. She said that she has TINY ear canals and had to use the infant sized supplies to test her. But, after she said all this she said that a blocked ear tube or fluid in the ear could cause the delay in her hearing response - but she didn't look inside to see if that was the case. WHAT?!?! Are you kidding me?

Then she said that she got no response at all on the left ear. I asked if that means that she does not have an ear drum or inner ear in there and she said she didn't know. WHAT?! Really, it's not even worth going into more detail. She didn't know anything other than that a bone anchored hearing aid (BAHA) could work for her. But they don't actually anchor it until after they turn 5, so before that kids have to wear a headband.

Whatever. I'll clearly have to re-test her somewhere else. So, we still don't know anything. Not that I'm THAT surprised, really.

Okay, well, it is late. I'll have to save the rest for tomorrow.

Take care,
Christy

3 comments:

grandma said...

Please tell me what type of items I could get Harlie to help stimulate her tongue or mouth..you know Grandma will have them their in an instant!! Such wonderful news. Harlie must have a remarkable memory to be able to remember toothbrushing!! I pray she keeps up the good work with speech therapy..I know in her mond when she starts to talk..she will have so much to say. I bet it will be "I love you Mama and Daddy. Thank you for being such wonderful parents".

Kim said...

I just had a second to catch up, sitting here in a hotel in Kyoto with thunder rolling in the background. Hooray Harlie on getting her wires removed! Sorry the ear stuff didn't go as hoped. How frustrating. But, I'm so happy her wires are out. Hang in there, take care of yourself now!

Robin said...

Hi Christy, I love your new blog - I tried to post a comment when you just switched from Babysites, but not sure if you got it. Anyway, I am following your lead and transitioning from Babysites to a blog as well. I'd been thinking about it for quite awhile after seeing a lot of other parent's blogs and then your pros and cons list really made my mind up for me!
Anyway, I am sorry to hear the ABR test was such a waste of your time. I was wondering - you are so close to Dr. Kesser in Charlottesville who, according to a lot of other parents of kids with Microtia Atresia, is one of the two best surgeons in the country for this. Have you spoken with him? I am taking Faith to the Atresia Microtia Ear conference this October to have her CT scans evaluated to see if she might be a candidate for atresia repair and if she is, (which I kind of doubt) I am definitely bringing her to Dr. Kesser to do it.
I'm so impressed with Harlie's surgery and how well she has recovered from it!
Best wishes,
Robin