Friday, September 12, 2008

after cochlear implant appointment #1

our appointment went well and i think we both really liked the surgeon a lot. she does all of the cochlear implant surgeries for children's hospital okland as well as for california ear institute in san ramon, so she has done many ci's on infants and children. little m charmed the surgeon, as she always does with these doctors :). i guess our audiologist had told her about little m months ago, so she knew all about us already. she was very positive, and she encouraged us with the news that everything looks good structurally in little m's head/ears and that she thinks surgery would be successful. when we asked some specific questions about losing residual hearing and so on due to the surgery, she was pretty upfront in the fact that little m does not have much residual hearing at all. i forget the exact words, but she said that she is definitely profoundly deaf on both sides, with very very little in terms of any hearing at all. (which makes sense especially as we notice little or no change with her hearing aids in)

the shocking and good news: if we want to go ahead with the implants, she would do them (pending insurance approval) at SIX months! wow. that is in the next month or so. with insurance it may take longer, especially as we'd like to do both sides at once (that may get rejected at first, but the surgeon says they always get what they want from the insurance companies, ie both sides implanted, in the end). we were really surprised, so we have a lot of thinking to do. but we essentially have to say the word and they will get the ball rolling.

also, she was very encouraging about little m's likely ability to speak/"hear" with the implants with such an early prognosis. she highly recommended the oral school where our friend mary claire works/ed in redwood city for monrovia, over other programs which incorporate more sign and which often have kids with lots more issues or later diagnosis than monrovia. you can pray for us as we begin to try to get that funded through the school district. our audiologist told us that our priority right now should be to get the IFSP (Individualized Family Service Plan, which is the school districts support for us from birth through age 3) to state which gets us services at that school. so we essentially have to prove that the districts services are inadequate for our needs compared to this program.

i guess the hardest part of the appointment was hearing some of the very scary complications that can happen. she is so small to have such a crazy operation. it's also hard having to answer so many questions about my pregnancy/labor (did you have any fevers or viruses, did you take any medicine, etc etc.) that basically make me mentally scroll through my pregnancy and labor to try and remember if there was something that could have caused this...if i should have noticed something or done something differently. that part is always difficult for me, because it has been hard not to blame myself already.

SO. lots of decisions to make, and another team to see next week. although in some ways we are content with who we've met here and feel happy to stay with this team. in the meantime, she is growing, discovering and changing daily, and we are ever so thankful she is our daughter and no one else's!

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