need encouragement-DD9 hearing loss is BACK!

[Val]

My DD9 has had fluctuating hearing loss since, well, probably since birth. She has had hearing aids for the last three years.... got a new ENT and he did surgery in Dec 5th- removed a cholesteatoma from her left ear and rebuilt both ear drums and put in new tubes. On Feb 8th she had near normal hearing- we took away the hearing aids and we celebrated!

Audi redid hearing thresholds today- found a "blood blister" and clogged tube in right ear, AND about a 30dB loss in BOTH ears AGAIN! Hearing aids are now back......I am heartbroken for her. Here we thought we had this licked after so many years of fighting, and it is all starting again.

We are moving her to public school from Catholic school next year so she can get better services, and our audi and ENT are wonderful, but I am so frustrated for her. Seems for every victory there is a set back. I know that her hearing loss is minor in the greater scheme of things, but she has had 5 surgeries, this last one being quite invasive, she has had speech therapy EVERY after school T/Th since she was 2, and she just has so many hearing struggles. She is so musical and so social- and she takes it so hard.

Only good news- I have no guilt sending her to Camp Lions with her friends with hearing loss. Audi actually recommended it....Camp Lions is such a positive, happy place! And we are going to WDW and having breakfast with the princess this summer- guess we will cling to the positive and deal with the negative!

 

[catnik]

Val:
Our son has had 2 surgeries to correct/improve his hearing, so I can understand your frustration/sadness with your daughter's fluctuating ability to hear. I wish I could do more than offer you support, but I have no real advice to share. I can share that our older children are in Christian school and our son is in public school because of the services they provide, and we have been pleased to date (tho we wish he could attend school with his siblings). Hang in there and know that many of us out here are facing some of the same challenges!

 

[SueM in MN]

The hardest things to deal with are the ones that you think you have already solved that come back again!
Sorry to hear about the sad news.

 

[Talking Hands]

Jim is having a second surgery on his ear in June. They hope to be able to restore his hearing completely. He still has about a 20 db loss in that ear. Really makes me nervous having him have surgery again.