Genetics and tests

Often hearing loss is associated with a genetic condition or syndrome, so we were sent to a Genetics doctor. After asking us a bunch of questions and suggesting some possible things that could be wrong, she ordered tests. Now we are working through 3 rounds of blood work and a urine sample. Can I just say that a urine sample on a baby girl wearing diapers is, umm… well, so far I’ve had two failed attempts and am going to back to get more bags this morning to keep trying. Here’s hoping we get a good sample tonight! =)

So right now, the name of the game is getting a lot of lab work done so we can potentially get some answers and a better understanding about what is going on with Ava and what may be in store for the future. Lots of waiting.

Little pink hearing aids

Things have been a little back-and-forth about whether Ava would start out with one or two hearing aids, but it looks like the verdict for now is TWO. We’re happy about this, because although the audiologist said Ava might have nearly-normal hearing in her left ear, it doesn’t really seem that way to us. Until she’s older it’s hard to get a really accurate read on her hearing levels.

I guess it would be nice for her to only have one…but really we feel better about this. We want her to have the best opportunity to develop speech & language, and getting both ears hearing more clearly ASAP is the biggest key to that.

Assuming the Early Steps program will cover the aids we picked out, you can read more about the ones she’s getting from Oticon in baby pink here.

Insurance

I just can’t understand why insurance companies aren’t required to cover hearing aids for children. I just. can’t.

Really I dislike talking about health insurance and I am even more hesitant to post about it, because it seems few things get people more riled up lately than this topic. And I don’t want this blog to become a place for rants.

But the truth is, this one has me wanting to campaign for change. It just baffles me that paying for a substantial insurance plan for our family doesn’t need to include the most essential service my daughter needs right now to become a hearing, speaking person who can fully engage in the world around her. She can’t hear without these little devices. But I guess it’s not “bad enough” for insurance to cover.

The flip side, of course, is that I’m so glad states like ours have programs like Early Steps who make sure EVERY child with a hearing loss can get his or her first pair of aids, regardless of the quality of their parents’ jobs or insurance coverage. YES, I feel like if we’re paying a premium every month for insurance through Disney, we should get covered; but really the privilege of having a good job sure doesn’t make us more deserving of hearing aids than a family whose parents work for less substantial companies than Disney. All that to say, it’s a complex issue for sure.

To keep this from just nothing but a commentate rant…here is the state of things. A bunch of states DO require hearing aid coverage for children. Here’s the list, according to ASHA:

ColoradoConnecticutDelawareKentuckyLouisianaMaineMarylandMassachusetts,MinnesotaMissourNew JerseyNew MexicoNorth CarolinaOklahomaOregon, and Tennessee require that health benefits plans in their state pay for hearing aids for children. ArkansasNew Hampshire and Rhode Island require coverage for both children and adults. Wisconsin requires coverage for both hearing aids and cochlear implants for children.

ASHA’s site also includes some info about advocating for state legislative reform, but it’s geared toward professionals, not parents. I’m a bit cynical about Florida addressing an issue like this in the near future. But Ava has 18 years of childhood ahead, and a lot can happen during that time.

Some verses

Isaiah 43:18-19
“Forget the former things; do not dwell on the past. See, I am doing a new thing! Now it springs up; do you not perceive it? I am making a way in the wilderness and streams in the wasteland.”

Isaiah 55:3
“Give ear and come to me; listen, that you may live.”

Isaiah 54:17
“‘No weapon forged against you will prevail, and you will refute every tongue that accuses you. This is the heritage of the servants of the Lord, and this is their vindication from me,’ declares the Lord.”