Thankfulness, progress…and more tests

In the belated spirit of Thanksgiving, YES, we were really thankful to have Ava’s hearing aids on in time for the holiday
Everyone is, of course, asking how Ava’s responding now that she has her aids. The first week she was pretty quiet, even a little less responsive that she’d been, but I think she was just taking everything in. The past few days we’ve started to see her laughing and interacting more again, and even starting to make slightly different sounds than the “aaaahhhh” noises she’s stuck with up till now. That’s a good sign that she’s absorbing some of what she hears.
She started occupational therapy 2 weeks ago. We’ve been exercising her every chance we get and are seeing progress. Unfortunately, Ava is at her best around 11pm. As tiring as it is, sometimes I just go with it and exercise her then because she gets so much more out of the time when she’s alert and animated.
As for the ongoing parade of specialist visits…today we saw the neurologist again. Three sets of lab work are back and everything is normal. (I kind of understand what they were testing, but not well enough to really explain it, so don’t ask). It sounds great that everything was normal, and it is, kind of. Ava still has global developmental delay and the gap is widening as she gets older. These tests simply ruled out some possible causes and move us on to another round of investigating.
We left the neurologist with a dizzying pile of appointments and tests to take on next. It’s a little overwhelming. Tomorrow we see the ophthalmologist and next week we have an EEG scheduled. Once I get callbacks from the other offices we’ll be getting an MRI, swallow test, a helmet for her flat head (caused by her not being strong enough to hold her head up in her first few months), and adding speech & physical therapy to her regimen.
So that’s where we’re at. One of these days I’ll write more again about how we’re processing all this, but there isn’t quite time for that right now. I think I am getting more used to living in the uncertainty and becoming more patient as I realize there is no clear guarantee of answers, or if answers will even make a different for Ava’s outcome or not. One day at a time.

 

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