If I haven't gotten the chance to fill you in personally by now, I can tell you that as I had posted, I was hounding the doctor's for the results of Elizabeth's CT-Scan on November 23rd. Well, the doctor did call me that night and left a message that wasn't exactly what I had wanted to hear.
The message was sort of casual and went something like this, "well, she does have an enlarged vestibular aqueduct but there isn't much you can do about it frankly, so I wouldn't worry about it. Just make sure that she isn't involved in any sports or activity that could lead to head trauma or her falling on her head because she could lose more hearing. If you have any questions, call me."
Say what?
Of course the medical researcher in me hopped on the internet and I was sobered by the research which seems to show that those with enlarged vestibular aqueducts are pretty certain to lose more hearing and often it can lead to losing all hearing.
After calling the doc back on Thanksgiving Eve to question my findings...I wasn't exactly reassurred when he said, "oh, I have a lot of books at home, I will look at them over the weekend and see what I can find out."
Say what?
I have to give him credit for at least admitting he didn't know, but it didn't do much in the way of reassuring me.
Needless to say, I have never had a four day holiday weekend that seemed as if it would NEVER end. I probably put in about 40 hours of research on the internet and if anyone wants to know anything about the vestibles in your ear, call me.
The last two weeks of talking to various specialists and doing more research (and actually having the Ct-Scan report in my hands) this is where we are:
1. The good news so far (knock on wood) is that it looks like this problem shows only in her left ear. (Oh yes, even though I think I am not religious I did say a lot of prayers to St. Anthony--and a few others on this score.) Go figure. And thanks to everyone else who has been praying along.
2. There is some question about the way the diagnosis itself is showing up on the report and my prayer now is that the first doctor misread it. The report shows a "prominent vestibular aqueduct with a 2mm saccular component". We have an appt. on Wednesday at the House Ear Institute with one of the world's top doctor's in the field on this condition. We are hoping to get more definitive answers then.
In the meantime, we are trying not to let on that we are stressed because I am pretty darn certain this little lady of ours picks up on our vibes. Even when we are talking to the doctors now I try and talk to them as if we are just happy as larks and that things are just dandy regardless of what we are talking about.
Elizabeth has probably had more tests and been to more doctors at two years old than many people have in their entire lives it seems. She is one busy lady. In between our doctor appointments she has had a lot of speech therapy and is going through evaluations from our school district for placement possibly into one of their programs. Can you believe it? She is not even three yet and the school district has a file on her.
She does manage, however to slip in time for some fun. More on that later. Here she is in her holiday finery, all dressed up for The Families with Children from China Holiday party where she met this darling girl Lia who is four and a half and decided to take Elizabeth under her wing for the night.
And if this photo of Elizbeth shows her to look a little somber, don't let that fool you. She was having a ball and was pretty much gleeful the entire night. And I can tell you this, "the girl can dance!".
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