Friday, July 4, 2008

Off to California

We had several appointments this past week and got the "okay" to go to California! We decided to leave a day earlier so I will make this post quick and to the point. The appointments went well. We absolutely LOVE Sunshine Cottage and the people there. It is truly an amazing place. We are even contemplating sending not only Courtney, but Jeremy and Logan there if that is the route Courtney will be able to take. On Wednesday we went there to enroll in the Parent Infant Program. They gave us a lot of wonderful information and did hearing aid molds for Baby Girl. They took a picture of Courtney while they were doing this, she was so good and it looked like she had pink bubble gum coming out of her ears. As soon as I receive the picture I will post it.

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!


Lisa said...

So glad to get an update. I've been dying. I hope you guys have a fabulous trip to Cali and enjoy being with your families after all this.

Melissa said...

This trip couldnt have come at a better time. You guys need a little break to enjoy life and have fun. I am glad to hear the new info on Courtney and that there is hope. Thanks for updating this as often as you do! We miss you and hope to talk to you soon. Call me when you get back!

robin said...

Bryan Karen Jeremy Logan and Courtney....What a blessing Courtney is, I take so much for granted in everyday life. Grandpa went to our Heavenly Father and in his place Gods gift to us all, he sent us Courtney. Courtney has touched my life in a way that I can cherish and be so grateful for. I am grateful to god for placing Courtney with us, a little angel who will touch so many lives in her journey. Thank you Jesus. I can't wait to see you all The Kohler Five. Love, mom, grandma Robin

elizabeth said...

This is a great blog. I hope you'll consider adding it to the aggregator at Deaf Village ( -- we'd love to have you as part of our community!

osito123 said...

Dear both
I came across your blog searching for information on the internet. I gave birth to a son with severe to profund hearing loss on May 25th and I wanted to ask you about the tubes for the ears.
If it is ok with you I write you to your email address?
I hope Iam not intruding

tammy said...

Hi Karen,
Reading your blog brought tears as it brought me back to the (recent) days of learning of our baby boy's profound hearing loss (he was born on 03/17). We've had hearing aids since the end of May and are on the CI route too. We live up in the Fort Worth area and our AVT used to be a director at Sunshine Cottage - I have heard WONDERFUL things about it! I wish it were closer so we could enroll Aiden! I'd love to stay in contact and wanted to let you know if you have any questions or would like to chat sometime let me know! Best of luck and our thoughts are with you and your family!