Tuesday, July 29, 2008

Much Better

The hearing aid vs. teether war might be coming to an end with the glorious help of a bonnet! Thank you to all who responded with tips and ideas, it certainly helped! It's too hot for pilot caps, but not for bonnets!

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


Okay, I am taking it to the people.... How do you keep the hearing aids in a 10 month old? What about while driving by yourself in the car? Do you even try? I put them in and she takes them out at least once before we even leave the driveway. When we received them yesterday they told us the left earmold may need to be re-done and we may get a lot of feedback. We do, so do I continue putting that hearing aid on? Has anyone had this problem? Are we sure all of this poking and prodding isn't hurting?

Any help would be GREATLY appreciated.

Wednesday, July 23, 2008

New Look

It is only Wednesday and this has been a big week for the Kohlers. Two of the five have a new look! On Monday we took Logan to the Pediatric Opthamologist to follow up on his esophoria. As it turns out we will now begin treating amblyopia (lazy eye). This develops when one eye is used more than the other, causing the less used eye's vision to become weak. To treat it Logan will have to wear a patch on his good eye (left) for two hours every day to try to improve the vision in his right eye. Once the vision is equal to his good eye they will, more than likely, do surgery to straighten his right eye. Apparently there are two issues, poor vision and alignment. If we correct the vision through patching he will have a greater chance of his eyes working together after surgery. Fortunately, we don't have to worry about glasses anymore, just the patch!

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.

My Pirates

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


We had an amazing time in California, but definitely did not want to come home! Going a day early gave us even more time to spend with friends and family. We started off our adventure with one night in Santa Rosa, picked up Jeremy who we hadn't seen for 6 weeks, and were off to Clear Lake for some R and R, visit with Aunt Pam and friends and Jeremy's 5th birthday. Unfortunately, it was so hot we just about melted and felt like we were back in Texas! It was even 109 one day!

After a few days in Clear Lake we came back to Santa Rosa and then headed up to Sonora to see Gigi, Grandpa, Aunt Debbie, Uncle Pat, and cousins Ryan, Matt and Mark. While we were there we went up to Pine Crest, one of Bryan's old camping stomping grounds. For some reason we have ALWAYS had some fluke thing happen to us while we are on vacation. This time we had a bat incident. Not a baseball bat, but a black bat with wings and all! To make a long story short a bat flew or fell, we aren't sure, into our spot at Pine Crest near the beach. After Bryan and Mark tried flicking it away with a sand shovel, the darn thing took a flying leap onto Jeremy who was in the water! Complete panic hit us all. Fortunately, Jeremy had a life jacket on and Bryan and Mark moved a lightening speed to get it off. There were no bites and in the end the bat tested negative for rabies so no shots. Yahoo!

After our bat adventure we went to Concord after stopping for lunch with Uncle Dave in Tracy. In Concord we were able to see Grandpa Charlie, Aunt Brooke, Aunt Jennie and cousins Zak and Maddie. We were even able to zip over to Sacramento for a quick dinner with Grandma Courtney. To finish out the trip we ended up back in Santa Rosa where we hung out with Aunt Tiffany, Aunt Kathy, Uncle Kevin and cousins Riley, Laney and Baby Kyle. We arrived back in hot, humid Texas late Wednesday night and are back to the daily grind!

Next week we have an eye appointment for Logan, two appointments for Courtney, one of which we hope she will get her hearing aids (Sunshine Cottage and ECI), a CT scan for Courtney (sedated) and I have a dentist appointment! Nothing like a little dose of reality when you return home from vacation!

Here are a few of our favorite pictures from our trip. Enjoy!

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!