I have been waiting to post an update because we have some cute pictures of Chloe that I have wanted to post. It has not happened so I am just going to go ahead and post without cute pictures which I know is not nearly as fun.
Chloe had her first implant on January 7th. She was so brave, she did great. The Dr. Said that everything went perfect and was very smooth and thought that there was a pretty good chance that he was able to save her residual hearing. She was the first surgery of the day so we were home that afternoon and Chloe was up and trying to run around with her sisters. Chloe had a few visitors and was thrilled with all of the gifts friends, neighbors and family brought her. I was thrilled with all the dinners :)
It seemed like the day for Chloe's implant activation took forever to get here. I was so anxious and nervous. I was so nervous that she would hate it and not want to wear it. But that was the opposite of what we have experienced so far! Chloe's implant was activated on Feb. 1st so it has only been a few days. But right from the day she got it she has been excited and wants to wear her implant ALL the time. I am exhausted with all the appts. but I know it will be worth it. Right now we are going to speech therapy 2x a week. We were able to start the day after her activation. Last week was a bit extreme I know, I had appts. everyday of the week most days 2 appts.
We are excited to see Chloe progress and to see what this year brings for Chloe .
Saturday, February 5, 2011
Thursday, December 2, 2010
lots going on
Alot has happened this week. Chloe got ANOTHER ear infection this week. It seems like they are never ending! I feel so bad for her.
We had a really hard time getting her into a doctor when we knew she had an infection, it was so frustrating! I had called our ENT, the nurse, our audiologist with primary, our family practitioner and could not get a hold of any of them. Finally at the end of the day we had a perscription called for drops called in for her. I also finally got a call back from the audiologist. She had some big news for us.
The company we had decided on going with for Chloe's implant Advanced Bionics had a recall! So we had to decide to go with the other company Cochlear or wait for no one knows how long for Advanced Bionics to get things worked out. It really was not a hard decision. We don't want to wait and we were concerned that this is the 2nd recall we have heard of with advanced Bionics. I am just thankful that Chloe does not have one of the recalled devices now.
Next week on Tuesday we get to go pick out colors for her implant! We also have to have her ear tubes checked to see if one side is still out of place. If it is we may have to do a surgery to have it fixed. Her ears have to be clear for her implant surgery and we are almost only a month away from her surgery date of Jan. 7th. I am really praying that it is ok. I hate to have to put her through another time of putting her under and we really don't want to have to pay for it again!
I have had a few friends and neighbors talk to me about doing a fundraiser to help us raise some of the 10,000.00 we have to come up with for the implant. Not sure yet what we are going to do it's a pretty busy time of year for everyone!! I am just thankful to have great friends and neighbors who want to help us. I love Chloe so much and just want for her to succeed I am getting excited and nervous for her to receive this amazing gift of receiving a implant.
We had a really hard time getting her into a doctor when we knew she had an infection, it was so frustrating! I had called our ENT, the nurse, our audiologist with primary, our family practitioner and could not get a hold of any of them. Finally at the end of the day we had a perscription called for drops called in for her. I also finally got a call back from the audiologist. She had some big news for us.
The company we had decided on going with for Chloe's implant Advanced Bionics had a recall! So we had to decide to go with the other company Cochlear or wait for no one knows how long for Advanced Bionics to get things worked out. It really was not a hard decision. We don't want to wait and we were concerned that this is the 2nd recall we have heard of with advanced Bionics. I am just thankful that Chloe does not have one of the recalled devices now.
Next week on Tuesday we get to go pick out colors for her implant! We also have to have her ear tubes checked to see if one side is still out of place. If it is we may have to do a surgery to have it fixed. Her ears have to be clear for her implant surgery and we are almost only a month away from her surgery date of Jan. 7th. I am really praying that it is ok. I hate to have to put her through another time of putting her under and we really don't want to have to pay for it again!
I have had a few friends and neighbors talk to me about doing a fundraiser to help us raise some of the 10,000.00 we have to come up with for the implant. Not sure yet what we are going to do it's a pretty busy time of year for everyone!! I am just thankful to have great friends and neighbors who want to help us. I love Chloe so much and just want for her to succeed I am getting excited and nervous for her to receive this amazing gift of receiving a implant.
Sunday, November 21, 2010
Strange and some more good news!
Chloe's teacher is great. She has a folder that she writes in everyday to tell me what they did at school and if anything unusual happened, just to be able to communicate and document things. This week her teacher wrote one day that the speech therapist pulled her aside for her daily therapy and Chloe wasn't able to even answer to what her name is or how old she is ???? I don't think that she couldn't hear her. It was just that she couldn't understand her I guess. The therapist works with her every day and she usually is at least able to answer those questions. This just breaks my heart, this disorder is so confusing and frustrating. I know that it must have just been a AN moment for her. I wish I could know what my little girl is going through, that she could maybe explain it to me. I guess this is just another reason for me to know that we are making the right decision for her with doing the cochlear implants.
I found out that our insurance will cover 30 visits to the speech therapist per year! This wont cover all of our visits but it is more than our old insurance! I was so relieved to find this out. Because at one point I was told that our new insurance would not cover speech therapy and it is such a vital thing for Chloe to have after having the surgery I was worried how we would pay for that too. So this was more great news for us :)
I found out that our insurance will cover 30 visits to the speech therapist per year! This wont cover all of our visits but it is more than our old insurance! I was so relieved to find this out. Because at one point I was told that our new insurance would not cover speech therapy and it is such a vital thing for Chloe to have after having the surgery I was worried how we would pay for that too. So this was more great news for us :)
Sunday, November 14, 2010
Good news and some bad news
Good news is our insurance approved Chloe to get the surgery!! This is really good news considering each side is 70 thousand!!! I know of a family that had been denied 3 times before they would cover anything they really had to fight thier insurance to cover anything. Our insurance gave approval first time! Bad news is we have a 10 thousand deductable we have to pay before the surgery can be done. With all of the testing we have had to do to get to this point we have pretty much eliminated our savings. With the first surgery scheduled for Jan. 7th that doesen't give us alot of time to come up with that kind of money. Not sure how this is all going to come together but it feels like this is the right thing to do for Chloe so I just have to have faith that it will all work out. I have thought about doing a fundraiser, it's hard to ask people for help, so im not sure how I feel about that.
We also have to make the decision on what Cochlear implant device to use, there are 3 different company's to choose from. The doctors cannot give us any advice on this. Makes it kinda hard to make a decision.
We also have to make the decision on what Cochlear implant device to use, there are 3 different company's to choose from. The doctors cannot give us any advice on this. Makes it kinda hard to make a decision.
Tuesday, November 9, 2010
Video of Chloe
We created this video of Chloe for Dr. Charles Berlin. He is an amazing man who is the worldwide expert on Auditory Neuropathy. We emailed him not knowing what to expect. The next day we got a call from him wanting to help us in any way possible. I have been so thankful for the amazing people who are willing to help us through this.
Chloe's story
Our little Chloe was born Dec. 19th everything seemed perfect. She was sick alot being born in the winter I know was hard on her and she seemed to catch everything. She started getting lots of ear infections. When she was around 2yrs old, we felt like her speech was not where it should be. Everything else with her seemed to be normal. We were able to start a program with Chloe called early intervention we had a speech therapist come to our home twice a month. Her speech therapist felt like she needed to have her hearing tested at the school. We had a hard time getting accurate hearing tests because she had constant infections. After not being able to get accurate hearing tests and all the ear infections we were finally able to get into a good ENT Dr. we got tubes for her. When we went to the Dr. for a follow-up appt. for the tubes we saw an audiologist, who even after her ears were clear was not able to get a accurate hearing test so he recommended doing a sedated ABR. The sedated ABR showed no response at all. At that point the audiologist said we think she has Auditory Neuropathy. We had never heard of this, it didn't make sense that she can hear us but her brain does not respond to any sounds?? We were really confused and frustrated. That was in Jan. of this year. It has been a long year for us. Since then we have had another ABR done that gave the same results. I guess we hoped that the 1st ABR was a mistake. She has also had a MRI that showed everything was normal.
In the spring of last year we were able to get in touch with USDB (utah school for the deaf and blind) they have been amazing! They have helped us understand auditory Neuropathy a little more, they have done more hearing tests, they got Chloe fitted for loaner hearing aides to see if she may benefit from them. Chloe started going to preschool at usdb this fall and LOVES it!! She has a great teacher. Unfortunately Chloe has not benefitted from her hearing aides. Her teacher and us have noticed there is no difference with and without her hearing aides. She has made no progress with her speech and comprehension. So if we want her to be able to hear clearly and be able to progress the next step is Cochlear implants. We moved forward looking into Cochlear implants for her. We have been working with a great audiologist at primary childrens hospital. It has been a long road and I know we still have a long ways to go, but we have a surgery date scheduled for January 7th. I question myself everyday if this is the right thing for her. It is very scary and exciting all at the same time. For those of you who have no idea what Auditory Neuropathy is here is a definition I found. I am still trying to understand it but I think this is a pretty good explanation. Chloe's quality of hearing is what is affected they say that people with Auditory neuropathy hear alot of static/buzzing and they have good hearing days and bad hearing days.
Auditory neuropathy is a hearing disorder in which sound enters the inner ear normally but the transmission of signals from the inner ear to the brain is impaired. It can affect people of all ages, from infancy through adulthood. The number of people affected by auditory neuropathy is not known, but the condition affects a relatively small percentage of people who are deaf or hearing-impaired.
People with auditory neuropathy may have normal hearing, or hearing loss ranging from mild to severe; they always have poor speech-perception abilities, meaning they have trouble understanding speech clearly. Often, speech perception is worse than would be predicted by the degree of hearing loss. For example, a person with auditory neuropathy may be able to hear sounds, but would still have difficulty recognizing spoken words. Sounds may fade in and out for these individuals and seem out of sync.
In the spring of last year we were able to get in touch with USDB (utah school for the deaf and blind) they have been amazing! They have helped us understand auditory Neuropathy a little more, they have done more hearing tests, they got Chloe fitted for loaner hearing aides to see if she may benefit from them. Chloe started going to preschool at usdb this fall and LOVES it!! She has a great teacher. Unfortunately Chloe has not benefitted from her hearing aides. Her teacher and us have noticed there is no difference with and without her hearing aides. She has made no progress with her speech and comprehension. So if we want her to be able to hear clearly and be able to progress the next step is Cochlear implants. We moved forward looking into Cochlear implants for her. We have been working with a great audiologist at primary childrens hospital. It has been a long road and I know we still have a long ways to go, but we have a surgery date scheduled for January 7th. I question myself everyday if this is the right thing for her. It is very scary and exciting all at the same time. For those of you who have no idea what Auditory Neuropathy is here is a definition I found. I am still trying to understand it but I think this is a pretty good explanation. Chloe's quality of hearing is what is affected they say that people with Auditory neuropathy hear alot of static/buzzing and they have good hearing days and bad hearing days.
Auditory neuropathy is a hearing disorder in which sound enters the inner ear normally but the transmission of signals from the inner ear to the brain is impaired. It can affect people of all ages, from infancy through adulthood. The number of people affected by auditory neuropathy is not known, but the condition affects a relatively small percentage of people who are deaf or hearing-impaired.
People with auditory neuropathy may have normal hearing, or hearing loss ranging from mild to severe; they always have poor speech-perception abilities, meaning they have trouble understanding speech clearly. Often, speech perception is worse than would be predicted by the degree of hearing loss. For example, a person with auditory neuropathy may be able to hear sounds, but would still have difficulty recognizing spoken words. Sounds may fade in and out for these individuals and seem out of sync.
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