Thursday, February 21, 2008

Flashback: 2003

All of this sickness in the house (and hoping the kids all avoid it) brought back vivid memories of when Emily was 2 going on 3. She woke up one weekend morning and was seeming not to hear very well. By the following day, thanks to a very loud school bell at our church's sunday school, I was convinced she couldn't hear a thing. Turns out I was right. She had lost most of her residual hearing overnight. There we sat, little ASL/signing capability, with a 2 year old who couldn't hear a thing with her hearing aids. We took her to our Audiologist to start the implant process, but there was an approval committee that made the decisions in the state we lived in, and they only did 1-2 pediatric implants a month. We knew we could be in for a long wait.

Fortunately she sailed right through the approval process, and they had a cancellation the next month (I think they heard the desperation in my voice). Either that, or the image of a little 2 year old girl, who had great hearing w/ her hearing aids, scared and confused got to them. She literally wouldn't let me out of her sight for that entire time period. Secretly- I kind of liked the cling factor- I got lots and lots of love. But, that's not the way I would have chosen to get it. Also, my husband and I were leaving a couple of days after we discovered Emily had lost so much hearing for a work trip for a week, so my poor mother and mother-in-law had to try to take care of Emily. I'm sure not the easiest time to babysit, for either the sitters or the sittee.

I was so worried about Emily getting sick and not being able to have her cochlear implant surgery. That was one of my biggest fears (other than the procedure itself). At one point she started getting a cold, and I just knew it was going to push us back. But no- we were fine. Anyway- it was quite possibly one of the longest month to two months of my life. After that first implant, all the rest seemed so much easier. I think because both of the other children had some hearing in the other ear, so it didn't seem quite so desperate. It's hard watching your child who loved school, and was really outgoing, turn into one who refused to get on the school bus, and would only come to her parents. She was a wreck. For us- getting Emily her implant was not a decision we made. She made it for us- at the age of 2 she had shown us how much she relied on her hearing to live her life. I've had no second thoughts. Now, did I have second thoughts about not introducing ASL at a young age? Yes. But I still would emphasize speech first.

Sorry this got way off topic :)


Jennifer said...

So your children lost their hearing suddenly, too? I need to go back and this Connexin, or something different? I lost mine suddenly...within age 4, and there is still no explanation for it. I think I'll always wonder what caused it...and if it will someday affect any of my children in some way. I've never had any genetic testing done...and all my kids hear just fine...but it's puzzling, all the same.
I was paranoid about getting sick before my CI surgery...and was so relieved when it was safely over! :)

Loudest Mom said...

Yes- They have LVAS (large vestibular aqueduct syndrome), which can lead to sudden loss of hearing. Emily's the only one whose hearing loss was so dramatic, but the others have lost large chunks at a time. None of them have had stable losses. On the other hand, they all have started out with some hearing as well. LVAS can be seen in Pendred syndrome which is what we believe the kids (and we) are carriers of. You can have LVAS though and not have Pendred. Does that make sense at all? LOL

It is interesting that you lost your hearing like that as well. Did you have any hearing loss before you lost it all? Delaney passed her newborn screening, but by 18 months was not responding to voices very well. By 3 we FINALLY figured out she couldn't hear us, and she was moderate to profound bilaterally. So I'm not sure if she too had a sudden drop, or just kept losing little bits at a time.

Anonymous said...

As strange as it sounds to some, I've always been grateful that Ethan was born deaf rather than go through the experience that Emily had. I just think it would be incredibly scary (from the child's perspective) and heartbreaking from the parent's perspective.

I like how you put it, she made the decision to want to hear, you and your husband following her lead.

You've gone through so much with your kids, I really admire your attitude and strength.