Well, we got stuck in traffic because it snowed 1/4 inch, in Minnesota. Totally slowed everything down and I ended up being late for our appointment even though I left early. Fortunately, everyone else was late too so it ended up being no problem.
They examined Sofie from head to toe and the genetics counsellor, nurse practitioner and the Geneticist all determined that Sofie in no way has any type of syndrome and in fact her hearing loss has nothing to do with her cleft. Yeah!!!!........say what????? It had not even entered my mind that Sofie's hearing loss could be independent of her cleft. No one had ever mentioned it, at all. I was stunned, shocked and for a change at a total loss for words. Even Jim was wondering what was going on with me. It took me all day to process it. It still doesn't change anything....but what a curve ball. At one point they stated that they thought her hearing loss was due to chronic ear infections and may get better. That was the part that left my brain racing. It took me all day to figure out why. It would be great if that happened. The only problem is, and this is what my little brain was trying to wrap itself around all day, there was no indication of any ear infections in any of her medical files. I do realize that the information from China is not always totally truthful, but, even her Love Without Boundaries information said nothing about ear infections. She hasn't had a single ear infection since she came home and, in fact, when they put her ear tubes in, there was no fluid in the ear at all. I am being cautiously optimistic on this one.
The other cause of her hearing loss could still be a genetic issue. There is one protein on a chromosome that is associated with hearing loss. It is called the Connexin 26 or Connexin 30. It has been shown to be the cause of hearing loss in a number of ethnic groups. They will therefore run a full genetic sequence on Connexin 26 and 30 to determine if that is the cause. She will also have a CT Scan of her ears to rule out any boney abnormality. And then again, we may never know why and that is OK too :)
The CT Scan is on November 23 and the genetic results take as long as 4 weeks.
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