Wow. What a week. They say it takes a village to raise a child. I always knew it was true, but it's never been quite so apparent in our lives until now.
Last Sunday our surgeon called and said he had a cancelation on Tuesday early morning if we wanted it (instead of Wednesday mid-morning). After a few calls to make sure we could pull it off, we accepted. We are amazingly blessed by our village. I cannot thank each and every one of you enough. Even those of you that we did not have to call upon personally, your positive thoughts and prayers have given us great happiness.
Eric's surgery went beautifully. He went in with a little cough, which was made worse by the anesthetic, so we did have to spend the night when we weren't expecting to. But it's always better to be safe than sorry, so I wasn't bothered at all. Eric has been a champ. Nothing phases my son. And Kaitlyn has been amazing as well. We tried to prepare her to see Eric with bandages and whatnot, but I wasn't sure how she would react to seeing all of that while in the hospital as well. She was wonderful! The best big sister ever!
Now the hard work begins. I almost feel a little like when I did when Eric was first diagnosed. Sort of "Oh my goodness, what do I do now?!". Since getting the implants has been the goal for so long. But step two is activation!! Scheduled for 5/29. This is referred to as a "hearing birthday" because it will be the first time Eric has heard really anything at all. The idea that Eric has never heard anything has been on my mind a lot lately. I'm noticing every tiny noise in my life. Can imagine that? Never having heard anything at all?
Showing posts with label Cochlear Implants. Show all posts
Showing posts with label Cochlear Implants. Show all posts
Saturday, May 19, 2012
Tuesday, March 6, 2012
We are on the schedule
Finally! I can finally say we are on the surgery schedule. It has been less than a month since my last post and I'm pretty shocked by that. I have called the insurance company so many times, and exchanged countless emails with multiple hospital staff members. It has felt like forever. And on Friday, roughly two hours after hanging up with the insurance comany, emailing the hospital yet again, and honestly feeling pretty unhappy, they called and said we were APPROVED!!!
Unfortunately, we lost our opportunity for surgery in April. So May 16th it is. How exciting!
We are also starting with a sign language teacher this week! It was supposed to be last week, but she had to cancel. She will be teaching us pretty much whatever we ask for. Exactly what we need to fill on the gaps of what we already know. Which thanks to Eric's recent IFSP tests, we know 133 of the 400 signs I assume they think are the most common. Not bad I think!!
Unfortunately, we lost our opportunity for surgery in April. So May 16th it is. How exciting!
We are also starting with a sign language teacher this week! It was supposed to be last week, but she had to cancel. She will be teaching us pretty much whatever we ask for. Exactly what we need to fill on the gaps of what we already know. Which thanks to Eric's recent IFSP tests, we know 133 of the 400 signs I assume they think are the most common. Not bad I think!!
Thursday, January 19, 2012
CI Consult Day
Today was CI consult day. It went very well. Today they did a quick booth test to see how Eric responded. The older he gets, the better he is at the testing. They did not give us specific numbers of where he was hearing, but they were happy with the consistent results that Eric gave them. They only said that they were basically the same as the levels as the test Eric had in December and still well above where he would need to be hearing in order to not be eligible for the CI.
After the booth test, I think we spent over an hour discussing the manufacturer options. The Children's Hospital only works with two of the three manufacturers. Cochlear and Advanced Bionics. Now comes the hard part, choosing! Obviously, they are both amazing companies. And where one may have an advantage, the other may have a disadvantage, but the next feature you look at, it's the other way around! And a lot of the things we have discussed are simply personal preference. It is going to be a challenge for sure. We are making a decision that Eric will live with for the rest of his life!
We also expressed to the team that we are very ready to get this process started. The HAs are not giving any benefit that we can see. We do not want to wait until Eric is a year old if we do not have to. So they will prepare the case for approval from our insurance, and hopefully we will have good news to share soon!
After the booth test, I think we spent over an hour discussing the manufacturer options. The Children's Hospital only works with two of the three manufacturers. Cochlear and Advanced Bionics. Now comes the hard part, choosing! Obviously, they are both amazing companies. And where one may have an advantage, the other may have a disadvantage, but the next feature you look at, it's the other way around! And a lot of the things we have discussed are simply personal preference. It is going to be a challenge for sure. We are making a decision that Eric will live with for the rest of his life!
We also expressed to the team that we are very ready to get this process started. The HAs are not giving any benefit that we can see. We do not want to wait until Eric is a year old if we do not have to. So they will prepare the case for approval from our insurance, and hopefully we will have good news to share soon!
Friday, December 9, 2011
Our first Deaf event!
Last Saturday, we went to our first event in the Deaf community. It was sponsored by the Marion Downs Hearing Center, Colorado Hands and Voices, and Colorado School for the Deaf and Blind. It was a fun holiday party. There were craft projects, cookie decorating (Kaitlyn had two!), Christmas carols and stories, and Santa visited!
As you can tell, Kaitlyn was not excited about Santa. We had to pry her off of Brad and I had to go up with her. The funny thing is,that no more than 30 minutes before this, she saw him outside as we were coming in and she was pretty excited!
It was a nice time, but it was a small event and there were not that many people there. And all of the ones I spoke with were professionals. I have emailed a little bit with a "Guide by your Side" through Hands and Voices and she was there, so it was nice to meet her in person. And there were quite a few children there with cochlear implants. The first ones I have seen in person. I know Eric is going to be fine, but it is reassuring to see other children that are older. Talking (and some signing) and seeming like every other kid in the world.
As you can tell, Kaitlyn was not excited about Santa. We had to pry her off of Brad and I had to go up with her. The funny thing is,that no more than 30 minutes before this, she saw him outside as we were coming in and she was pretty excited!
It was a nice time, but it was a small event and there were not that many people there. And all of the ones I spoke with were professionals. I have emailed a little bit with a "Guide by your Side" through Hands and Voices and she was there, so it was nice to meet her in person. And there were quite a few children there with cochlear implants. The first ones I have seen in person. I know Eric is going to be fine, but it is reassuring to see other children that are older. Talking (and some signing) and seeming like every other kid in the world.
Saturday, November 19, 2011
Hearing Clinic
Yesterday we had a Hearing Clinic appointment at The Children's Hospital and officially found out that Eric is indeed a canidate for Cochlear Implants (CIs). We have been wanting Eric to get CIs since he was diagnosed with his hearing loss, but we still had the possibility of the doctor saying "I'm sorry, Eric cannot recieve a cochlear implant." But I was nervous for nothing and our goal is for Eric to recieve bilateral cochlear implants sometime close to his first birthday.
We want Eric to have implants primarily because with his level of hearing loss, he will not learn to speak. We know that sign language is a wonderful language (that we are already learning as well) but life will have situations where Eric will be disadvantaged by his inability to speak. What parent wants their child to be disadvantaged in any way? In this case, there is something we can do about it. There is a lot of controversy regarding CIs in Deaf culture. Many people who are against CIs think that parents want to "fix" their child and something is "wrong" with them. I don't think that's true at all. I don't think any parent feels that way. We are proud of our of Deaf child! He will always be Deaf and he will know all about Deaf culture. If the day comes where Eric decides that he never wants to put his implant on again, we are ok with that. But we have given him the opportunity to make that decision.
Our entire family will be involved in Eric's implants. We are not changing Eric. We are all changing. We will all learn sign language. We are all on a journey.
We want Eric to have implants primarily because with his level of hearing loss, he will not learn to speak. We know that sign language is a wonderful language (that we are already learning as well) but life will have situations where Eric will be disadvantaged by his inability to speak. What parent wants their child to be disadvantaged in any way? In this case, there is something we can do about it. There is a lot of controversy regarding CIs in Deaf culture. Many people who are against CIs think that parents want to "fix" their child and something is "wrong" with them. I don't think that's true at all. I don't think any parent feels that way. We are proud of our of Deaf child! He will always be Deaf and he will know all about Deaf culture. If the day comes where Eric decides that he never wants to put his implant on again, we are ok with that. But we have given him the opportunity to make that decision.
Our entire family will be involved in Eric's implants. We are not changing Eric. We are all changing. We will all learn sign language. We are all on a journey.
Hello!
Hello! We are beginning a blog to easily keep our family and friends as informed as they'd like to be on our family's journey with Eric's hearing loss. We will share progress reports and also websites if you'd like to read more. I can't believe how much information we have learned the 6 months since Eric was diagnosed!
This is an overview from the Children's Hospital of Colorado on Hearing Evaluation in children.
And to get everyone up to speed, this is what has happened since Eric was born in April 2011:
Eric did not pass his newborn hearing screens while we were still in the hospital. We returned for a follow up hearing screen almost two weeks later and Eric did not pass again and we were referred to an Audiologist. At this point we were nervous, but optimistic that Eric still had fluid in his ears.
We couldn't get into the Audiologist until almost a month later. In mid-May Eric had his first ABR. He slept the whole time, just like he was supposed to. Except that Brad & I could hear very audible sounds coming from the earbuds stuck into Eric's ears. And he never even flinched. That's when I started to get worried. At the end, she sat down and said, "I have difficult news, Eric definitely has a severe to profound hearing loss in both ears."
We scheduled a follow-up ABR for June 1st to verify the results. This time she manually tested higher decibel levels than the standard test will allow. Still, no response at 90db across all frequencies. Step one: Hearing Aids (HAs).
That same day, we met our CO-Hear (Colorado Hearing Resource facilitator) for the first time. She gave us TONS of information and spoke to us about the Early Intervention programs that are available to us. Early Intervention is a state program for children with all disablilities to help them and their families.
On June 10th Eric recieved his HAs. Just one day after he was 2 months old! They looked big on his tiny head. In Eric's case all sound must be amplified to at least 90 db and the HA maxes out at 140 db. The biggest thing I dislike about the HAs is the feedback. You cannot put anything near Eric's ears or the HA will start squawking LOUDLY. Annoying when you have a two month old that you carry around. And a little sad, because he also doesn't seem to notice the noise.
In Mid-July we met with the Family Intervention group. They came to our house to evaluate any needs Eric may have beyond his hearing loss that Early Intervention could/should address. That was an easy appointment. Eric did well, no obvious issues and now we will be assigned a speech therapist. I know, a speech therapist for a 3 month old baby!
On August 9th we met Michelle, our speech therapist for the first time. We love her. Because of Eric's age, Michelle is training us how to stimulate communication with Eric, rather than training him to communicate with us. Language is one form of communication, but it is not the only one. Also, we are learing what to look for to tell if the HAs are working. Michelle meets with Eric every week. Three times a month at home with Brad and I, and once at daycare so his teachers know what to do as well.
On October 3rd Eric had his first hearing test in a booth. It was not the best test. The earliest a child will usually respond at all is 6 months, and Eric was just a few days shy of that. And by the time we got in and ready, he was tired. With his HAs on (aided), we got a possible response at 75 db. So if that was truly a response, that's really loud in his ears!
On November 1st Eric had an MRI to see if he has the physical components to be eligible for a Cochlear Implant (CI). They also took blood to test for common genetic causes of deafness. I was happy they opted to do this while he was already sedated for the MRI. I didn't really want to be part of them hurting my baby trying to draw his blood!
And that's it up until now!
This is an overview from the Children's Hospital of Colorado on Hearing Evaluation in children.
And to get everyone up to speed, this is what has happened since Eric was born in April 2011:
Eric did not pass his newborn hearing screens while we were still in the hospital. We returned for a follow up hearing screen almost two weeks later and Eric did not pass again and we were referred to an Audiologist. At this point we were nervous, but optimistic that Eric still had fluid in his ears.
We couldn't get into the Audiologist until almost a month later. In mid-May Eric had his first ABR. He slept the whole time, just like he was supposed to. Except that Brad & I could hear very audible sounds coming from the earbuds stuck into Eric's ears. And he never even flinched. That's when I started to get worried. At the end, she sat down and said, "I have difficult news, Eric definitely has a severe to profound hearing loss in both ears."
We scheduled a follow-up ABR for June 1st to verify the results. This time she manually tested higher decibel levels than the standard test will allow. Still, no response at 90db across all frequencies. Step one: Hearing Aids (HAs).
That same day, we met our CO-Hear (Colorado Hearing Resource facilitator) for the first time. She gave us TONS of information and spoke to us about the Early Intervention programs that are available to us. Early Intervention is a state program for children with all disablilities to help them and their families.
On June 10th Eric recieved his HAs. Just one day after he was 2 months old! They looked big on his tiny head. In Eric's case all sound must be amplified to at least 90 db and the HA maxes out at 140 db. The biggest thing I dislike about the HAs is the feedback. You cannot put anything near Eric's ears or the HA will start squawking LOUDLY. Annoying when you have a two month old that you carry around. And a little sad, because he also doesn't seem to notice the noise.
In Mid-July we met with the Family Intervention group. They came to our house to evaluate any needs Eric may have beyond his hearing loss that Early Intervention could/should address. That was an easy appointment. Eric did well, no obvious issues and now we will be assigned a speech therapist. I know, a speech therapist for a 3 month old baby!
On August 9th we met Michelle, our speech therapist for the first time. We love her. Because of Eric's age, Michelle is training us how to stimulate communication with Eric, rather than training him to communicate with us. Language is one form of communication, but it is not the only one. Also, we are learing what to look for to tell if the HAs are working. Michelle meets with Eric every week. Three times a month at home with Brad and I, and once at daycare so his teachers know what to do as well.
On October 3rd Eric had his first hearing test in a booth. It was not the best test. The earliest a child will usually respond at all is 6 months, and Eric was just a few days shy of that. And by the time we got in and ready, he was tired. With his HAs on (aided), we got a possible response at 75 db. So if that was truly a response, that's really loud in his ears!
On November 1st Eric had an MRI to see if he has the physical components to be eligible for a Cochlear Implant (CI). They also took blood to test for common genetic causes of deafness. I was happy they opted to do this while he was already sedated for the MRI. I didn't really want to be part of them hurting my baby trying to draw his blood!
And that's it up until now!
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