Grace for Rett » Grace's Life with Rett Syndrome

Audiology appointment? Check!

We can check Audiology off our list for now. Next is Ophthalmology then Orthotics and who knows what else!

The result of today’s appointment is that Grace has ‘Glue Ear’ which means that the tubes in her ears don’t drain away the fluid behind her eardrums. Apparently, this is extremely common and expected amongst girls with RS because of their inactivity and their lack of speaking, which is part of the widening of the tubes. It’s something that she should grow out of but we just have to watch that the fluid doesn’t get infected.

What this means for Grace at the moment is that although she can hear, what she hears is muffled because of the membrane behind the eardrum being blocked by fluid.

They’ll see her again after the winter to see what the status is and find whether her tubes have opened themselves yet.

Just makes me wonder how many other things are ‘totally normal’ for RS girls which I’ve never found in my research. How many things the doctors nod their heads about (Yes, yes that’s totally expected) but they don’t tell me about. Who am I anyway? Oh yes…just her mom.

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