Friday, August 10, 2007

Turn on Day

March 26th Lily got hooked up with her Nucleus Freedom Processor.

Looking back now we were all very excited about the big day. I think we all expected instant results.

They hooked up to the computer ran through some tests and turned it on. It didnt bother her at all. It was definitely not like the videos you see on youtube or other cases were kids go from hearing nothing to something. Lily has had some hearing, and she still has hearing in her left ear even unaided... So when the Dr. rang the bell... on her left side, well yes she heard that.

She wouldn't respond to her name or our voices but she did pick up Shhhh sound right away - so that was pretty amazing . And she definitely cannot hear high frequency sounds. She even said something right after using Shhh sound - something like I am spinning the bear. The Doctor said it was the best hook up she had ever seen.

Magic Ear Surgery Day Details / Photos

Monday, February 12, 2007

Surgery date!

Lily will have surgery on Tuesday, March 6th!
We found out this afternoon. That is 3 weeks from tomorrow. It is a relief to have an actual date! it will be at a surgical center instead of at the hospital. I am hopeful this means that they won't try to boss us around so much and will let us be with Lily as much as possible. -K

Monday, February 05, 2007

After a long break, a few updates...

Whew. The holidays and a couple of big illnesses have kept me from updating our little blog here. Let's see if I can sum up the past six weeks. On Christmas day, Dr. Antonelli emailed us to say Lily's surgery was a sure thing and to look out for a call from his surgery scheduler sometime after the beginning of the New Year. I found out this person's name and called her the second week of January to find out the status of Lily's insurance approval. She gave me a standard response about how she has 35 patients at a time to get insurance approval for and how she works on them in the order she receives the cases and that she only works Mon-Fri from 9-4. I took that to mean that she would get to Lily's case when she got to it. She also said that at that time, she was already scheduling surgeries towards the end of February, which was pretty disheartening news. A week later, I wanted to call her again about Lily's status, but I figured I'd get the same response from her. I decided to have a purpose for calling and told her that if there was a cancellation list, that we wanted to be on the list. She said great and added us to the list. I found out from her that surgeries are performed on Tuesdays and Fridays. Tuesday surgeries are at a surgical center and Friday surgeries are at Shands hospital. (I wonder which place would be the most child-friendly and would allow me to be with Lily as much as possible. I guess that getting the surgery done ASAP is almost more important to me at this point and I am going to try my best to make things go our way no matter where we end up for surgery.) We continued to wait to hear about Lily's insurance approval and a specific date for her surgery. The last week of January, we come down with the second big illness in less than a month. We are coughing, feverish, snotty, and miserable. Chris's parents come for a visit and we pass our germs on to Gram. While they were here just a week ago today, the surgery scheduler calls and asks if we can be ready for surgery for this past Friday. My knees go numb and I say "Yes!". Lily is still coughing at this point but seems to be on the mend. I was hopeful that she would be well by Friday. The surgery scheduler says to take Lily in to see her regular doctor to listen to her lungs and check out her ears and that she would work on speeding up the process for insurance approval (which we still hadn't gotten yet!) and that we would talk again on Wednesday. Lily's cough worsened and she coughed so hard that she threw up all over the both of us Tuesday night. I decided then that we would probably cancel. This was disappointing but there was a positive to all of that- the insurance approval process was accelerated and we now have insurance approval. If there is another cancellation in the near future, hopefully we will be called again. Chris thinks we should send her flowers for all her hard work (and try to butter her up a bit too). So this is where we are- waiting. I imagine that we will hear Lily's surgery date sometime this week, which will likely be in March sometime. I just hope that we get another opportunity like the one we had last week...