Dr. Daniels Visit

We had our appointment with Dr. Daniels this past Tuesday! We did a lot of the usual--review her history, talk about implant devices, and check her ears for fluid. She has had fluid in her ears for a couple of weeks now, so she isn't hearing a whole lot with her hearing aids right now. We have an appointment set for January 4 for Ellie to get tubes put in. Dr. Daniels said we could wait and see if the fluid clears up, but even if it does clear up in time for her cochlear implants surgery on Feb. 10, the fluid could build up again after surgery and cause problems. So I told him we should just do it and avoid all the worry of canceling her cochlear implants surgery. She also will be having an MRI on January 18 to make sure her cochleas are looking good and ready to receive implants.

Dr. Daniels also gave us more information on the different types of cochlear implant devices. We were originally thinking we would go with the Nucleus 5 (from Cochlear Corp), which just came out in September (I think that was the month). It is a lot smaller than any other device, and it has a remote control to use for switching programs. But, Dr. Daniels told us that the customer service for Cochlear Corp. is not that great at all and can be very frustrating at times to deal with. He also said that the external devices tend to break a little bit more often. The other option we have would be to go with Advanced Bionics. He said they have outstanding customer service and they care more about people, rather than only being completely business-minded. The Advanced Bionics device also has a higher capability to hear music better, whereas Cochlear Corp. focuses more on speech. I asked Dr. Daniels what he would implant into his child and he said he honestly couldn't answer that because Cochlear Corp. just came out with the Nucleus 5 and he is very impressed with the small size of it and the remote control that comes with it. Before the Nucleus 5, he said he would do Advanced Bionics without hesitation. So, needless to say, we have a lot to think about again in making our final decision. We'll keep you posted!

I hope you all have a MERRY CHRISTMAS!

February 10 -- Implants Date :)

Well, we have a date on hold for Ellie's bilateral cochlear implants. It will be February 10. Dr. Daniels does only 2 implant surgeries per month...Ellie has to be at least 12 months before she can get them. Her birthday is January 17, but both of the January dates were spoken for already. They said that if something is canceled for some reason, we will be the first one to fill in that slot. It is actually quite amazing that we are even able to get in as soon as February. Especially since she is still in the process of being evaluated right now! She had an appointment last Friday for an evaluation with the audiologists at Spectrum Health. They did a hearing test with her hearing aids on (and found basically the same thing as Jack usually finds at Shawnee Park). They also showed us the different devices that we have to choose from. Then, on Monday (yesterday), we had an evaluation appointment with a speech pathologist from Spectrum. She said that Ellie is actually doing very well with her hearing aids (not news to me.) :) She seemed quite surprised actually and was hesitant to say that she would recommend her for a cochlear implant. But then she asked me a bunch of questions and discovered that, even though Ellie is doing remarkably well for a baby with profound hearing loss, she is still only making "ah-ah-ah" sounds and she doesn't show any recognition of the meaning of words (ex: mommy, daddy, buh-bye, etc.) So in the end, she said that she thinks Ellie would do great with cochlear implants. The only thing that both people doing the evaluation said was that they might want to reassess her after she has had her hearing aids for a longer period of time. They didn't say anything for sure, and I think that Dr. Daniels will still want to do the cochlear implants as soon as possible simply because she does have a profound hearing loss and there is only so much the hearing aids will be able to do....Anyways, I hope that wasn't too confusing....

Tomorrow is our last appointment with Tim Burkhart (chiropractor)...even in the midst of all this testing and evaluating for cochlear implants, we're still praying that God might choose to heal her ears.

Thanks again for all your thoughts and prayers as we go through all this!

Appointments--Evaluation for a Cochlear Implant

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!

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

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!

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!

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!

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!

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!

Ellie's 1st week with hearing aids

For the most part, Ellie is not too bothered by her hearing aids. She sometimes likes to tug at them, but I just divert her attention to something else and she forgets about them again. In my last post, I mentioned that I thought she was responding to some loud noises. But since that first day, we haven't really seen many reactions....we've tried banging pots and pans, yelling her name, and making all kinds of loud noises. She just doesn't seem to react--it could be that she hears it very softly and doesn't really care since she isn't used to hearing anyways...I don't know??

On the other hand, we think she can hear her own voice. With her hearing aids in, she jabbers like crazy!!! And she jabbers loud!! We can hardly carry on a conversation. :) It's actually pretty funny!

We have a couple of appointments set up next week to tour potential schools for her--Shawnee Park and West Oakview. Shawnee Park has an Oral/Deaf program that does not incorporate sign language. West Oakview does incorporate sign language. We will be touring each school next week and as soon as we make our decision, we will start having someone come to our house about once a week to work with Ellie.

Hearing Aids

Ellie got her hearing aids today! At her appointment, the audiologist (Jillian) thought that she saw Ellie respond to her voice at 45 decibels. Jillian didn't turn the aids up all the way because it would be too much for her little ears. They told us to keep her hearing aids on for only a total of 1-2 hours today so that she can ease into it. When she had the hearing aids on, we were watching her really closely...trying to see if we could get a reaction. We got a couple reactions when we were talking pretty loud! :) One time, I hid behind the door and said "Ellie" really loud while Joe held her...he said she right away looked at the door! Fun. :)

Now the battle will be to get her to keep them on...we got some toupee tape from the beauty store to help keep them in place. I also ordered a hat that the audiologist recommended to help keep them on--it will hold them in place, but the material allows the sound to still reach the microphone on the hearing aid.

We have a check-up in 3 weeks to have her hearing aids adjusted--hopefully turned up a little bit more! All in all, it was a fun day to be able to see Ellie react to some of the noises we make. :)

side view--bright pink with clear sparkly inside her ear


I think she likes them! :)

We have an ID number!

I called Children's Special Health Care Services to see if they had processed our application yet. They did! So I was able to get Ellie's ID number for CSHCS, and I called Hear USA to make an appointment for her to get her hearing aids. We will be getting them next Monday. :) Yay for a productive day!

Pray for Miracles

....Something I forgot to post previously...In terms of a time frame, we are hoping that Ellie will be able to have a cochlear implant sometime around March.

I also wanted to let you know about a video that I saw on "youtube." Go to this link http://www.youtube.com/watch?v=iCZ3CBmYZfw . This is a video of a baby that has a cochlear implant. She is at the doctor's office ready to get her cochlear implant activated (turned on.) So this video shows her being able to hear for the first time. Warning: Be ready to cry! (at least I did) :)

In the meantime, we hope to get Ellie's hearing aids in the next couple of weeks. But I also wanted to ask everybody to just pray for a miracle. I not only pray for one everyday, but I'm always watching Ellie to see if God gave us a miracle. I know that God is able to heal Ellie! On the other hand, He also made her with these ears that are so special, and I know that He has great plans for her. Anyways, that's just my way of asking everybody to please continue to pray for a miracle...Thanks!

The Story So Far....

I decided to set up a blog as a way for everybody to be able to know what is going on with our little girl. So here is the story so far...

Ellie was born January 17, 2009. She did not pass the newborn hearing screens in the hospital, so we had to go back and do another test when she was a few weeks old. Once again, she didn't pass that test, but we still were not too worried because they suspected she had fluid in her ears. Since the test was only pass/fail, fluid can easily cause the test to be "fail." So we went back in March for a more in-depth test. This test showed "moderate hearing loss" in one ear and "severe hearing loss" in the other. We then went to an ENT doctor to see if she still had fluid in her ears. He confirmed that there was fluid in her ears and decided to wait a couple of months to see if the fluid cleared up. We went back to see him (Dr. Sprik--ENT) in May and he told us the fluid was gone, so we could do another hearing test. At this point, we were not too worried because we thought Ellie was responding to our voices. We would talk to her and she would babble back.

On June 18, we went to Spectrum Health for a hearing test. We were shocked when we heard that she was not responding to anything the Audiologist was sending to her ears. She told us that Ellie had "severe to profound" hearing loss in both ears. Definitely not what we were expecting!

We got in touch with Ken-o-sha, and they did a hearing evaluation and a developmental assessment for Ellie. For the hearing evaluation, the audiologist (Mary) put "ear plugs" in Ellie's ears and then went into a room across from us where she could observe through a mirror. I held some toys for Ellie to play with, and then Mary would say things through the ear plugs to see if Ellie would react. She did get a reaction at 95 decibels and higher. This would put Ellie in the "profoundly deaf" category. Basically, she probably couldn't hear a lawn mower if it was right next to her. On the other hand, it was kind of fun to see her react to hearing something. When Mary cranked up the volume and Ellie heard her, she looked around, then up at me...thinking "what was that??" The developmental assessment showed that she is developing at a perfectly normal rate (which we basically knew already).

Ellie has been fitted for hearing aids. She will be getting bright pink around the ear and a clear sparkly to go inside the ear. (so cute!) :) They will adjust them so that they are amplifying to the max. Then, after about 4 1/2 months of hearing aids (late December), she will have another hearing test done to see where she is at. On January 5, we will go see Dr. Daniels who is a cochlear implant surgeon. He will evaluate her and see if she would be a good candidate for a cochlear implant.

Right now we are in the process of getting Children's Special Health Care Services (CSHCS). CSHCS will cover the cost for everything related to Ellie's hearing issues. We cannot get the hearing aids for Ellie until we have CSHCS, so hopefully it will come through soon! We just received the application in the mail yesterday with a letter saying that Ellie qualifies for CSHCS.

That's it for now, I will keep you all posted as there are new developments!