Tuesday, July 29, 2008
Today we had another excellent meeting with Lisa and Jacque at Sunshine Cottage. Everyday Bryan and I find ourselves with more and more questions. It is so nice to know that every week we are able to have answers to our many questions. One question that Bryan and I continue to struggle with is whether or not we should do one or two CIs in September. There are good reasons and research to support both options. I keep coming back to the idea that we do have two ears for a reason! I just don't know.
On another note we think that the hearing aids might be providing Courtney with some benefit. We discussed how unusually tired Courtney has been this past week, especially after she has worn her hearing aids for a while. This may be because she is hearing. However, distinguishing the sound is something different. The way that Lisa explained it was turning on a static radio all day long and having us try to make sense of it. We would be tired too! Courtney also turned two separate times when Bryan called out, "No, no, no!" from behind. It was as if she heard something, but wasn't sure what or where it came from.
Only time will tell what benefit, if any, Courtney is receiving from the hearing aids. Even if it was a fluke it was a welcomed glimmer of hope.
Logan is doing fabulous with his eye patch! He wore it for 3.5 hours the past two nights when he only has to for 2 hours! I figured it wouldn't hurt and if it wasn't bothering him, I wasn't going to take it off! So far a much better week for the Kohlers!
Thursday, July 24, 2008
Any help would be GREATLY appreciated.
Wednesday, July 23, 2008
The first day we only made it 45 minutes and an hour and 15 minutes today. The only way we could get him to do it was to use a timer. If he was still wearing his patch when the timer went off he could pick out a treat. Jeremy joined in the festivities and has been a pirate right along with Logan.
Today Courtney got her hearing aids! She did great! I had a lot of anxiety about what they would look like, what would people think, how she was going to do, how I would feel, etc. While we were at Sunshine Cottage we practiced putting them in and taking them out several times. She didn't seem to mind at all. We were all quite impressed with her. It wasn't until we were driving home that we caught her with them in her mouth. Once all of the fun distractions were gone, her tiny fingers would creep up and snatch one out. I would take it away, she would cry until she would find the other one and put it in her mouth. We did two rounds of this before we decided we should wait to put them in again until we were at home where we had better distractions.
Overall, she did awesome! We go back to Sunshine Cottage next Tuesday for more techniques and strategies. This week we are to focus on keeping the aids on and not asking her, "Can you hear that?" You don't realize how bad you really want to say that, it's kind of funny! Here are a few other things we are to do:
- Keep a happy face on when putting the hearing aids on - we want Courtney to associate them to something positive.
- Point to our ears when we hear something and say, "I hear a ..., that's a ....." so she will begin associating sound to ears.
- Label everything auditorally (i.e. call Jeremy and Logan by their name not The Boys)
- Don't use pronouns - everything has a name.
- Don't panic!
Our hope now is that we don't find Jeremy or Logan with a hearing aid on or Courtney wearing a patch! It will be a miracle if we can keep everything and everyone straight! Tomorrow we are back to San Antonio for Courtney's CT scan.
Daddy and Courtney
Courtney's New Profile
Friday, July 18, 2008
Friday, July 4, 2008
We also met with Dr. Bonilla who followed up on last week's procedure and diagnosis. Her official medical definition is Profound Sensorineural Hearing Loss (PSHL). Basically, we were gently handed over to Dr. Syms (Neurotologist) who we met with yesterday.
Thursday was a bit more emotional as they did several hearing tests which Courtney failed. My head knows she will, but my heart still isn't communicating properly with my head! We have many options, but he will do a cochlear implant the week of her first birthday if we decide. Dr. Syms feels strongly that we should only do one implantation because after that she can only ever have a cochlear implant in that ear. The key isn't hearing, it is if she can hear well enough to acquire speech. If she can with one implant then we will wait because there is some amazing research and they have re-created the inner ears on several animals and then passed ABRs. Of course, if she isn't doing well enough before theses medical advances and technology, then we will implant both. As long as she is acquiring speech we can keep one and save the other!! The window of opportunity for the cochlear implants is from 1 year of age to 3. However, we want to do the cochlear implant at 1 if she is still a candidate.
So much for a quick update! We return to Dr. Syms in August and will have a CT scan before we see him to determine what our next steps will be. Because of Courtney's profound hearing loss the hearing aids may not work, but again, we have to exhaust all options.
That is it in a nutshell. Yahoo, we are off to California!