We have a couple of appointments set up for Ellie to start being evaluated for a cochlear implant. The first one is next Friday (the 20th) at 8 am. I'm not exactly sure what they will be doing at this one...The second one is the following Monday (the 23rd) at 8 am. This one is for speech--they will want to know what kinds of sounds she is making, etc.
I took Ellie this past Wednesday to see a chiropractor (Tim Burkhart). She did end up needing an adjustment....her neck was a little off. This was encouraging because Tim said that the neck area can be related to ear issues. I don't want to get my hopes up, but we're definitely praying that this could maybe help improve her hearing. We will be following up with him next Wednesday and the following week as well. Since she has been adjusted, I keep on trying to see if I can get responses with lower volumes and sounds like "shhh" or "ssss"....these are sounds that we were sure she would not be able to hear. Sometimes I think she does respond, but other times (most of the time), she seems oblivious.
Anyways, that's all for now...I will keep you posted with the appointments and hearing test results!
Friday, November 13, 2009
Tuesday, November 3, 2009
New Hearing Test
Ellie had another hearing test done at Shawnee Park yesterday. This test showed improved hearing responses! Jack (the audiologist) said that he was seeing responses from Ellie without hearing aids for frequencies that he hadn't been able to get responses to before. He said it looked like she could hear at about 85 decibels (which would be a 10 dB improvement from before).
When she was wearing hearing aids, she was very vocal, so it was a bit more difficult for Jack to test her...but he said she looked like she responded to his voice around 35 dB. This is a jump up from the 45-50 dB level that he found last month. We're very excited about this improvement! On the one hand, we hope that it will continue to improve....but on the other hand, if she does continue to improve, it might take her out of candidacy for a cochlear implant when she turns 1. Jack told me yesterday that an infant with "profound" hearing loss can get an implant at 12 months, but a baby with "severe to profound" hearing loss may have to wait until they are 24 months. Right now Ellie is still in the "profound" category, but if she continues to improve with the test results, she may have to wait awhile.
So you can see, we're kind of tugged in a few different directions...We would love her hearing test results to continue to improve so that she wouldn't ever need a cochlear implant. BUT we don't want to wait a whole year if she will still need it when she's 2...that would be a lot of language development time lost. Another direction we have been exploring is stem cell treatment. A couple of weeks ago, I was just online researching different things and I came across someone's blog about stem cell treatment for hearing loss. It is still in the experimental stage, but I do think that sometime down the road, they will be able to improve hearing by using stem cells. There are no guarantees as to when this may come out, but it got us thinking about some different options. The catch is that once someone is implanted, their residual hearing would be gone, so stem cell treatment may not work. (Again, this is all online research, so I know I probably don't have all the facts straight....please, if you know anything more about this, let me know!) So we were talking about maybe implanting just 1 ear and waiting for stem cells for the other ear, but we kind of feel that we should do what is best for Ellie right now....which would be bilateral (both ears) cochlear implants. So those are the different directions we feel pulled toward...lots to think and pray about!
Ellie is a busy girl...she is pulling herself up on everything now (and getting into everything she's not supposed to!) :) She is always so happy...I couldn't have asked for a better baby! Here are some new pictures!
She like to crawl through tiny spaces!
Halloween Costume--Go Michigan!
Ellie's cousin, Jada
Tuesday, October 6, 2009
Ellie's Hearing Test
We went to Shawnee Park yesterday for a hearing test. They first tested her without the hearing aids which came out with basically the same results from Ken-o-sha--profound hearing loss...registering sound at about 90 decibels. Then, we did the test with the hearing aids in. She showed some signs of hearing around 45 decibels, so she is hearing quite a bit more than we thought she was. :) I think it just takes time for her to know how to respond to sound. We keep trying different kinds of sounds and she is gradually responding to more and more. Today, I got a response from an "mmmmm" sound. We try to make different sounds for each toy that she has so that eventually, hopefully, she will try to make those same types of sounds.
Today, it was fun to see her laugh at her cousin, Logan, because he was babbling loudly. It was like it was the first time she had ever really heard him, and she thought it was the most hilarious thing...so cute!
Today, it was fun to see her laugh at her cousin, Logan, because he was babbling loudly. It was like it was the first time she had ever really heard him, and she thought it was the most hilarious thing...so cute!
Sunday, October 4, 2009
The latest and greatest
We have been noticing more responses to Ellie's hearing. We're pretty sure she can hear us "cluck" our tongues, and possibly some VERY loud talking. Tomorrow, we will go to Shawnee Park for a hearing evaluation. The audiologist there can do a hearing test for her and also adjust her hearing aids if they need it.
Last week I was really questioning whether or not we made the right decision to go with Shawnee Park (auditory/oral) program. I talked to a woman who has a little girl in the Total Communication program at West Oakview. She had such great things to say about the program there, and stressed that it is helpful to use sign language with her daughter. I did have some concerns about how we will be able to communicate with Ellie when she is in a pool or bath or in bed (because she will not be able to wear her processor for the cochlear implant in the water or to bed). Without signing, it seems like it would be frustrating in those situations. Anyways, I was on the verge of switching schools for Ellie, but then I talked to another mother of 2 girls that have been through the auditory/oral program. She assured me that Shawnee Park is a great place to be. Of course, every child is different, but it was just reassuring to hear that her girls just thrived there. They were able to me mainstreamed into their school of choice by kindergarten. As for communicating when the processor has to be off, she said that both of her girls have learned to read lips. Her oldest can have an entire conversation just by reading lips. Amazing!
She also talked to me about insurance. They have the same insurance as we have, and she said that it will cover a bilateral cochlear implant (both ears implanted at the same time). This is huge because it will help Ellie to know where a sound is coming from! We are totally excited about that!! I called our insurance carrier this past summer when we needed hearing aids, and they said they don't cover anything related to hearing, so I assumed they wouldn't cover a cochlear implant. However, I guess they consider hearing aids a "lifestyle choice," but will still cover cochlear implants....don't ask me???? Anyways, since we can go through our insurance for the cochlear implant, we don't have to wait for 6 months for Ellie to wear hearing aids. (that was a requirement set by Children's Special Health Care Services.) So I was able to move up her cochlear implant evaluation to November and her meeting with Dr. Daniels to December 22. So now (hopefully) Ellie will be able to get her cochlear implants sometime in jan/feb. Yay!
Last week I was really questioning whether or not we made the right decision to go with Shawnee Park (auditory/oral) program. I talked to a woman who has a little girl in the Total Communication program at West Oakview. She had such great things to say about the program there, and stressed that it is helpful to use sign language with her daughter. I did have some concerns about how we will be able to communicate with Ellie when she is in a pool or bath or in bed (because she will not be able to wear her processor for the cochlear implant in the water or to bed). Without signing, it seems like it would be frustrating in those situations. Anyways, I was on the verge of switching schools for Ellie, but then I talked to another mother of 2 girls that have been through the auditory/oral program. She assured me that Shawnee Park is a great place to be. Of course, every child is different, but it was just reassuring to hear that her girls just thrived there. They were able to me mainstreamed into their school of choice by kindergarten. As for communicating when the processor has to be off, she said that both of her girls have learned to read lips. Her oldest can have an entire conversation just by reading lips. Amazing!
She also talked to me about insurance. They have the same insurance as we have, and she said that it will cover a bilateral cochlear implant (both ears implanted at the same time). This is huge because it will help Ellie to know where a sound is coming from! We are totally excited about that!! I called our insurance carrier this past summer when we needed hearing aids, and they said they don't cover anything related to hearing, so I assumed they wouldn't cover a cochlear implant. However, I guess they consider hearing aids a "lifestyle choice," but will still cover cochlear implants....don't ask me???? Anyways, since we can go through our insurance for the cochlear implant, we don't have to wait for 6 months for Ellie to wear hearing aids. (that was a requirement set by Children's Special Health Care Services.) So I was able to move up her cochlear implant evaluation to November and her meeting with Dr. Daniels to December 22. So now (hopefully) Ellie will be able to get her cochlear implants sometime in jan/feb. Yay!
Thursday, September 24, 2009
Ellie's 1st day of School
Ellie had her first day of school on Monday! Don't worry, she's a straight-A student so far. :) Actually, all she had to do was play. Her teacher, Kelly, will take the first couple of sessions to just get to know us. Her sessions will be for 2 hours every Monday morning. Kelly took a turkey caller along with her and we discovered that Ellie can hear that! We got her busy playing with something and then would do the turkey caller and she (usually) would look around to see where the noise was coming from. Yay!
On Wednesday, we went to HearUSA for a check-up visit. They turned her hearing aids up a little bit more, but didn't do any kind of hearing assessment so we are not exactly sure how much she can hear yet. We keep trying to test out her hearing by talking loudly behind her, but we haven't seen any huge reactions yet. When we think we do see a reaction, it's usually because of something that she caught out of the corner of her eye.
The picture above is of Ellie wearing one of the Hanna Andersson hats we use to cover her hearing aids. They are supposed to keep her from pulling off her hearing aids, although she has perfected the art of taking her hat off and ripping out her hearing aids--all while I'm driving in the car!
Tuesday, September 15, 2009
Shawnee Park
So we decided to go with Shawnee Park! We are very excited to get started working with them. :) I have an appointment to meet with some people from Shawnee Park and Ken-o-Sha on Friday morning to make an "Individual Family Service Plan" (IFSP). We will establish where we are at right now, and then set some goals for what we want to happen.
Ellie continues to be very vocal with her hearing aids. :) We will go back to Hear USA (hearing aids place) next Wednesday--hopefully they will turn the hearing aids up so that she can hear other things!
Ellie continues to be very vocal with her hearing aids. :) We will go back to Hear USA (hearing aids place) next Wednesday--hopefully they will turn the hearing aids up so that she can hear other things!
Sunday, September 13, 2009
Schools
Last week we toured 2 different schools for Ellie to go to. The first school we went to was Shawnee Park. At Shawnee Park, they focus on developing listening skills without using sign language or lip-reading. We were able to meet some of Ellie's potential teachers, and we really liked everybody that we met! It was fun to be able to see the 2-year old, 3-year old, and kindergarten classrooms. :)
The second school we went to was West Oakview, which is a total communication school. They incorporate sign language and lip-reading as well as working on speech/listening skills. We really loved all of the teachers/supervisors that we met.
Regardless of which school we choose, someone will start coming to our house once a week to work with Ellie and me. Then, when she turns 2, she will go to school for 3 or 5 half-days. (I can't imagine sending her away 5 days a week!) By the time she reaches kindergarten, she will hopefully be ready to be mainstreamed into whatever school we want to send her to.
Before we went on the tours, we were pretty sure we wanted her to go to Shawnee Park. But after visiting West Oakview, we found that we really liked that school too. We've been talking about pros and cons of each school all weekend...we're starting to lean toward Shawnee Park again, but we are not 100% sure yet, so I will keep you posted!
The second school we went to was West Oakview, which is a total communication school. They incorporate sign language and lip-reading as well as working on speech/listening skills. We really loved all of the teachers/supervisors that we met.
Regardless of which school we choose, someone will start coming to our house once a week to work with Ellie and me. Then, when she turns 2, she will go to school for 3 or 5 half-days. (I can't imagine sending her away 5 days a week!) By the time she reaches kindergarten, she will hopefully be ready to be mainstreamed into whatever school we want to send her to.
Before we went on the tours, we were pretty sure we wanted her to go to Shawnee Park. But after visiting West Oakview, we found that we really liked that school too. We've been talking about pros and cons of each school all weekend...we're starting to lean toward Shawnee Park again, but we are not 100% sure yet, so I will keep you posted!
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