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-   -   Update (http://birthmark.org/board/showthread.php?t=3973)

abatie 08-01-2010 09:45 PM

Update
 
Becca just returned from her lasted doctor visits and for the most part the news was very good. Her dermatologist that diagnosed CMTC was so impressed with how well she was doing that she dismissed her from care (unless she would have further complications). She felt that the danger of complications like ulceration was much lower now that she had made it through the first year without any ulcerations.

The cardiologist was also extremely impressed with her. She had no enlargement of the heart or lungs and so she does not need to see him again for a year. This was a relief because we were worried that she would need surgery soon.

The final problem that wasn't so good was her hearing. She still did not have good hearing results and needs to go back and have a brain-stem response test. This will look at how her ear and brain "communicate" with each other to try to figure out where the problem is. Hopefully this test will give the needed answers. They recommended going ahead with the tubes in a week but they didn't feel it would solve the problem.

missy 08-02-2010 01:07 AM

How does Becca communicate? Does she know any signs? Is she saying any words at all or making appropriate sounds?

Good to hear all the good news!!

Missy

abatie 08-02-2010 02:09 AM

She knows a couple of signs but will not use them on a regular basis. She has a few words - mama, dada, uh-oh. She is really good at grabbing things she wants-finding toy food (or cans out of the pantry) when she wants food and her sisters' doll bottles (our her own juice) when she wants something to drink. She is making some sounds but we notice on the days that she is not hearing well she also communicates much less. The audiologist at Mayo felt her communication should be better (especially since she is so smart and so good at problem solving). This was frustrating because I had felt her communication was behind but the last audiologist that she saw said that her communication was fine. I thought I could have confidence in her because before she became an audiologist she was a speech therapist. It is frustrating for us because we take steps forward (the CMTC and cardiology) and then take more steps back (hearing). Just now she grabbed a brush because that means "brush my hair". But if we don't understand she cries and gets very upset.

missy 08-02-2010 12:33 PM

I remember Izzy's frustration at not being able to communicate as well as he wanted to. If you haven't already started, try PECS (Picture Exchange Communication System) for some of the words and phrases she needs everyday. We found this system VERY helpful in the kitchen, but not so much anywhere else.

Google "PECS samples" and see if you can find some pictures to print and display.

Also, it sounds like PECS is a replacement communication system, but it was not. When Izzy would use a picture, we would repeat and repeat the word or phrase. Rather than using it as a replacement, we used it to help teach vocabulary.

This still happens to us: Izzy will come up and say something, obviously important. We can't understand him. The look on his face when he realizes we have no idea what he's talking about is really awful! He no longer cries or gets upset (a little upset), but we all know...

Hugs to you and to Becca!! The steps forward are wonderful!!

Missy

abatie 08-02-2010 05:31 PM

Thanks Missy! I talked to the speech teacher this morning and she thinks PECS would be a great idea. Communication is such a tough thing. They want us to increase her communication but finding that magic button that she is going to jump on is the challenge. Hopefully when we get to the bottom of the issues the doctors will have some answers for us on how to improve the communication.

missy 08-02-2010 11:25 PM

It's hard to watch them struggle when they can't get their point across!

Take care!

Missy

abatie 08-03-2010 02:04 PM

Well someone at Mayo, in all their wisdom, (I am being sarcastic) has decided that instead of just doing the ABR like ordered by our doctor that Becca now has to have another hearing evaluation, meet with another ENT, and then decide if she will have the ABR. I wasn't home when they called so I didn't get to question what is going on.

abatie 08-09-2010 11:33 PM

Becca made it through her anesthesia appointment today. Her surgery will now happen for sure on Wed. It will be a relief to have the tubes in and to see if it makes a difference. We also got the dates for the next appointments at Mayo. The condition they are now leaning toward for the hearing is auditory neuropathy.

abatie 08-11-2010 08:32 PM

Becca's tubes were placed today. We are so thankful that it is over. The ENT said that there was a ton of fluid in both sides and surprise, surprise she had another ear infection. That whole problem should finally be behind her. She is bouncing around just like nothing happened. We go back to Mayo in a month to continue our journey for answers on her hearing.

abatie 09-01-2010 02:58 AM

Becca had an ENT recheck today. Clear tubes, ears, correct placement, and no infection. Unfortunately there has been no improvement in her hearing. It has actually been worse the past four days. She has made almost no response to any sounds in four days. Hopefully we will get some answers on Sept. 14-15 at Mayo. She will have another hearing test, ENT visit, and ABR at the hospital.


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