Wednesday, January 14, 2009

Lily's hearing is worse

Lily had an ENT appointment first thing on Monday morning. After a bit of thought and pushing from me, Paul agreed with me and decided to take her. The choice being I take Lily plus Noah, Isaac and J or Paul (who is already working in the hospital) takes Lily (and no small children) and Lily then goes to his office and sits quietly.

It was quite funny to hear him describe waiting for half an hour then when the consultant recognised him everything happening quickly! He also said how weird it was sitting in the hearing test sound proofed room - you hear your pulse in your head and a bit of tinnitus - I have been in rooms like that on many occasions with various kids so it was odd to realise that for Paul it was the first time. He and I have different roles around the children.

The news was not good. Lily's can barely hear in her right ear now- about an 85 decibel loss, between severe and profound, the left ear is the same as last time, about a 40 decibel loss, moderate. The doctor has no idea why she's losing her hearing and as all the tests have been negative and steroids haven't helped there's nothing else he can do. He gave Paul some literature on cochlear implants in case it gets worse. I'm not sure whether people with DS can get cochlear implants - the info seems to say if you have additional disabilities they need another conference.

He also checked as to why we haven't yet had an appointment with the hearing aid people at the hospital only to find they hadn't got his referral, so Lily has been re-referred and we'll hopefully get an appointment soon.

Lily seems to manage pretty well with this degree of hearing loss. We notice she shouts more and can only use the phone with her left ear and has the TV on very loud but otherwise she picks up most of what we want her to. I'm hoping that certainly with hearing aids it shouldn't affect her ability to do her job - unpacking lingerie at a department store.

1 comment:

Mel said...

I don't know a thing about cochlear implants and disabilities, but I do know that my aunt's mother had one just before Christmas. She and her husband had made the decision to pay for it themselves by getting one of those reverse mortgages, but the health system paid for it, and she is in her late 70s. The difference it has made to her life has been amazing. She has had to spend a lot of time in Wellington learning how to use it, but it has certainly been worth it. Hope it all pans out for Lily too.

We are all settled in Ashburton now, and Luke will start at the Champion Centre in Feb. Yay!