We are on quite the journey! I prepared myself that we would probably have to file an appeal with our health insurance to cover simultaneous bilateral cochlear implants. I did not, however, think that they wouldn't even cover one! I have a plan. I know what we need to do, and will do it. She will have her surgery on September 26th and they will cover both of them that day. I will fight, I will advocate.
What I don't understand is the justification for denying the coverage: Sensorinueral hearing loss is not a medical condition. As for the simultaneous bilateral portion, that is because they claim that the treatment is not consistent with published clinical evidence. Bilateral CIs are unproven.
Not a medical condition? I just don't understand!
Wednesday, August 27, 2008
Monday, August 25, 2008
Jeremy's first day of kindergarten!
I don't think I have seen a kid more excited for school than Jeremy. He could hardly wait to get to Mrs. Bowers class. There wasn't an ounce of hesitation in him. He seemed to have had a great first day and is most certainly looking forward to tomorrow.
Sunday, August 24, 2008
From Dad
This is my first post to the Blog. Karen and I decided to add some music for your listening pleasure, and that's where I come in. I LOVE music, and all kinds as you can tell by our playlist. It breaks my heart every day that my daughter won't be able to enjoy music the way that I do. I ask myself all the time "Why Courtney?" How can this little angel not hear me when I tell her goodnight and and I love you, or when I play the radio in the car, how did this happen?? I think about it on my drives to the station ( about an hour ) and it just breaks my heart. I know with CI's that she will be able to have a great and fairly normal life ( thank God for technology ), but it still makes me want to cry when a great song comes on and I know that Courtney won't be able to hear it like I do. I know that this may sound somewhat trivial to some, given the fact that she'll be able to hear and aquire language with the CI's, which I am so thankful for that words cannot express. I guess I'm just a little on the sad side that I may not be able to share my passion of music with her like I do with my boys. Reality can be tough sometimes. I know this post was on the random side, but I felt like yappin' a little bit after we did the playlist on here. The songs on here just reminded Karen and I of our times together when we first met up to the present time. They jump all over the place, but I felt this Blog just wasn't complete without some music. Thank you all for replying to my wife on here, I know it really helps.
Saturday, August 23, 2008
70dB
Last Thursday Courtney had a hearing test. I was a little apprehensive about going by myself because the last time she had one was one week after we found out about her hearing loss and it was all I could do to keep myself from sobbing. I knew she had been hearing somethings, but I didn't want to get my hopes up.
At our session at Sunshine Cottage on Tuesday we discussed the speech banana. For those who don't know, the speech banana represents the range needed to acquire speech. I have included a sample audiogram that illustrates the speech banana and other levels of hearing. Normal hearing is in the 0-25dB range which would mean that a person could hear everything from 25dB until 110dB and beyond. Each level of hearing loss has a range and Courtney, being profoundly deaf, is in the 90 -120dB range. When she had her ABR done she had no response in either ear at 125dB. She can't even hear herself let alone a jet plane!
Typically, with hearing aids you can move up about 30dB's. It is also much easier to hear the low sounds (staying to the left on the audiogram) such as the hum of a lawn mower, or for speech the "mm" and "baba" sounds. Courtney, with her hearing aids on, was able to respond to speech sounds at 70dB! This explains why she heard a vacuum, hairdryer, bells, and occasionally, Bryan's voice. After we celebrated her hearing a sound in the booth, she would ever so sweetly look up and smile as if to say, "Mommy, I did it, I did it!" It was amazing. She went up by over 50dB, way to go girl! She has also been making a lot more noises, including "mmm". Most likely it is because aided she can hear herself making that sound.
As you can see, she is only at the 70dB level which isn't enough to acquire speech, but does means she is still a prime candidate for cochlear implants. The hearing test confirmed our decision to do simultaneous bilateral cochlear implants and the fact that she is hearing something. This is stimulating her brain and laying the pathways for when she does get her CIs. Basically, when we turn her on, it won't be the very first time for her to hear anything at all. They think that it will help her to be more successful with the CIs when she gets them.
So, if we can get through to the insurance company to see if they will pay for bilateral simultaneous CIs, we will be good to go!
At our session at Sunshine Cottage on Tuesday we discussed the speech banana. For those who don't know, the speech banana represents the range needed to acquire speech. I have included a sample audiogram that illustrates the speech banana and other levels of hearing. Normal hearing is in the 0-25dB range which would mean that a person could hear everything from 25dB until 110dB and beyond. Each level of hearing loss has a range and Courtney, being profoundly deaf, is in the 90 -120dB range. When she had her ABR done she had no response in either ear at 125dB. She can't even hear herself let alone a jet plane!
Typically, with hearing aids you can move up about 30dB's. It is also much easier to hear the low sounds (staying to the left on the audiogram) such as the hum of a lawn mower, or for speech the "mm" and "baba" sounds. Courtney, with her hearing aids on, was able to respond to speech sounds at 70dB! This explains why she heard a vacuum, hairdryer, bells, and occasionally, Bryan's voice. After we celebrated her hearing a sound in the booth, she would ever so sweetly look up and smile as if to say, "Mommy, I did it, I did it!" It was amazing. She went up by over 50dB, way to go girl! She has also been making a lot more noises, including "mmm". Most likely it is because aided she can hear herself making that sound.
As you can see, she is only at the 70dB level which isn't enough to acquire speech, but does means she is still a prime candidate for cochlear implants. The hearing test confirmed our decision to do simultaneous bilateral cochlear implants and the fact that she is hearing something. This is stimulating her brain and laying the pathways for when she does get her CIs. Basically, when we turn her on, it won't be the very first time for her to hear anything at all. They think that it will help her to be more successful with the CIs when she gets them.
So, if we can get through to the insurance company to see if they will pay for bilateral simultaneous CIs, we will be good to go!
Tuesday, August 19, 2008
September 26th
The surgery date has been set! September 26th, 7:30am at Methodist Hospital in San Antonio. We decided to go ahead and do simultaneous bilateral CIs. Bryan and I have agonized over what the best thing for Courtney would be, and we feel confident that doing two at the same time is what is right for us. I almost feel relieved to have made the decision and can move forward and mentally prepare for the 6 hour surgery.
We have been attending Sunshine Cottage regularly and have a new Parent Advisor, Julie, who is wonderful. The past few sessions have been about CIs, audiograms, and the infamous speech banana. Bryan and I both still feel so thirsty for information. I honestly don't know how anyone could get through all of this without the help of a school such as Sunshine Cottage. What a blessing to be so close to such an amazing place!
Jeremy will start kindergarten on Monday. I can't believe it! He has been counting down the days and absolutely cannot wait! He and Bryan had a father son weekend and went to Houston to see an Astros game, went swimming, school clothes shopping, and no trip is complete without a visit to the Bass Pro Shop. Thursday is meet the teacher night so we will go, drop off his school supplies, and meet his teacher.
Logan is our little stink! He is nothing but trouble! He is talking more and more and still loves to play baseball. We go back to Dr. McCash on September 2nd to find out if the 2 hour patching prescription is working. I sure hope so because I can't imagine trying to get him to wear it any longer!
Bryan and I are doing well and certainly keeping busy! My company will be doing some work out in California for at least the next 3 years so we are very excited about that. I am definitely enjoying being able to stay home with Courtney Tuesdays and Thursdays, but I know next week will be a rude awakening for all of us having to get up so early for school!
We have been attending Sunshine Cottage regularly and have a new Parent Advisor, Julie, who is wonderful. The past few sessions have been about CIs, audiograms, and the infamous speech banana. Bryan and I both still feel so thirsty for information. I honestly don't know how anyone could get through all of this without the help of a school such as Sunshine Cottage. What a blessing to be so close to such an amazing place!
Jeremy will start kindergarten on Monday. I can't believe it! He has been counting down the days and absolutely cannot wait! He and Bryan had a father son weekend and went to Houston to see an Astros game, went swimming, school clothes shopping, and no trip is complete without a visit to the Bass Pro Shop. Thursday is meet the teacher night so we will go, drop off his school supplies, and meet his teacher.
Logan is our little stink! He is nothing but trouble! He is talking more and more and still loves to play baseball. We go back to Dr. McCash on September 2nd to find out if the 2 hour patching prescription is working. I sure hope so because I can't imagine trying to get him to wear it any longer!
Bryan and I are doing well and certainly keeping busy! My company will be doing some work out in California for at least the next 3 years so we are very excited about that. I am definitely enjoying being able to stay home with Courtney Tuesdays and Thursdays, but I know next week will be a rude awakening for all of us having to get up so early for school!
Friday, August 15, 2008
Poll
On Tuesday we returned to Dr. Syms for our CT scan results. Everything seemed to check out normal and Courtney is definitely a candidate for cochlear implants. We discussed the risks and benefits and once again came across the gut wrenching decision as to do one or two.
For parents of those who didn't have the option to do simultaneous bilateral CIs and could do it again would you do one or both? For those parents who are waiting until 12 months to do a CI, what would you do? And for those individuals who have gone from one to two, do you recommend it?
Any feedback would be great!
For parents of those who didn't have the option to do simultaneous bilateral CIs and could do it again would you do one or both? For those parents who are waiting until 12 months to do a CI, what would you do? And for those individuals who have gone from one to two, do you recommend it?
Any feedback would be great!
Friday, August 8, 2008
Ring, Ring, Ring!
Yesterday we saw Courtney, officially, turn in the direction of sound! Little Miss Sassy Pants turned to the sound of two different types of bells and one set of small symbols while we were playing a listening game at Sunshine Cottage. I was so focused on what my part of the game was - to point to my ear and say, "Mommy hears a bell. Ring, ring, ring," that I almost missed the moment! I never seem to be one that gets emotional in the moment, but when I reflect back I realize that that was the first time we have ever seen her respond (turn her head) to any type of sound. Hope!
We need that hope because we have made the decision to do simultaneous bilateral cochlear implants pending the CT scan results next week. We will keep you posted!
We need that hope because we have made the decision to do simultaneous bilateral cochlear implants pending the CT scan results next week. We will keep you posted!
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