Great news.

I don't think I've written about this topic yet, but last year, in June I think, we learned that Paige has some significant hearing loss in her right ear. We found it at a routine hearing test at her doctors office. I really thought it was going to be fine when we went for the follow up, but lo and behold she has trouble hearing high pitched sounds in her right ear. In her left ear she has some trouble hearing low pitched sounds. Between the 2, she hears pretty well, for all practical purposes. She isn't really affected at all because they compensate for each other, and because the high pitch loss is not in the conversational range. It's all pretty interesting, I have learned a lot about hearing through the whole process!
We do know the cause, her vestibular aqueducts are too big on both sides and the supporting structure in her cochlea is indistinct. They found it on her ct scan back in Sept. I guess this is the cause for 30% of hearing loss in kids like her. It has likely been that way since she was born. At least we know-I just kept thinking "thank god we came to boston" because I think in NH no one would have gone to this detail to find out what the cause was and we may never have found out. This aqueduct thing is fairly new and controversial between radiologists because the difference in size is like 0.2mm from hers to normal ones. Incredible what we can do now. The hearing loss will likely continue over time, but no way to know for sure-it will fluctuate too. Some Drs don't let their patients with this play sports because any head trauma can make it worse. Thank god she's into dance! Our Dr doesn't really restrict activity though, she thinks that would be worse.
Also, 10% of these cases are due to a genetic defect called Pendred syndrome. 100% of Pendred patients have this type of hearing loss and also thyroid defects. So we tested her for this gene and they didn't find any defects. Doesn't mean it's necessarily normal-just her coding regions are intact.
I keep reminding myself that she could be so much worse off, it could be cancer or something else terrible, but it's not. We will have to adapt, but we can and that's the important thing here.
So the good news is that we've tracked her for almost a year now and she has not had any significant change in her hearing during that time. We can now monitor her just twice a year instead of 4 times per year. And we can do it close to home instead of driving to Children's Hospital each time. I love her ontolaryngolist-I am sure I spelled that wrong-so we will continue to send the results to her and have any future follow up with her.
So that was the best part of my day-things are status quo and no more drives to Mass. for these appointments! Yay! Gotta celebrate each little thing.
Have a great weekend.
Kristin