Thursday, February 28, 2008

What...No Implant??

I'm frustrated, confused and emotionally drained. So, we have been trying to rush this process of getting the second implant done and all that was needed before we could submit the request to the insurance, was an aided test (a hearing test with just a hearing aid on). The reason they do this is to prove that the patient is not hearing the necessary speech sounds with just a hearing aid. They told me on Monday that they would not be able to get us in for that until early April--which would really not help our plan to get this all done in May. But Tuesday night they called and said that they had a cancellation, which by the way, has never happened in three years. I was thrilled, but the problem was that a new ear mold (the part of the aid that goes in the ear) was needed and to have one made would be another 2-3 weeks. Well, later that night Jake and I went to our parent class and when I opened my change holder in the car there was his old ear mold! Things couldn't be working out better and all of these small details were confirming my decision of going forward with a second implant.
Well, to make a long story short(er) after the aided test, we found out that Logan was not technically eligible for the second implant because his hearing loss is not "bad enough". This was new news to us, our last audiologist told us he was profoundly deaf in both ears (the same audiologist who told me I was crazy, for over a year, when I told her I felt Logan's loss had become worse and it had). According to Wednesday's test, he is "Severe to Profoundly" deaf in that ear, which means he is barely ineligible to receive the surgery-according to the insurance company, who approves it. I should have been thrilled, his loss is not as bad as we thought, but I wasn't--I was disappointed. Being that he's so close, I wish that we could do the implant, especially since we know his hearing loss is progressive-which means it will get worse. I just don't get it, it took me 2 months of sleepless, prayerful nights to come to a decision that I knew was right, only to not even have that choice anymore.
We came home that day and let him wear just the hearing aid all day and I "tested" him to see what he was hearing. I called his name from three feet away...nothing. The telephone rang from about 2 feet away...nothing. I even turned the blender on and nothing! According to this test he should have heard all of that. We are going to get another test done tomorrow at John Tracy to see if we get the same results. I think we are going to submit the request to the insurance with a letter from the audiologist stating why he needs this.
I feel like my thoughts are kind of scattered in this post, sorry for being all over the place.

Tuesday, February 26, 2008

We Love Sound Bingo

I bought this game when Logan was 6 months old and have been waiting until he would be able to play it. My older son really loved it when he was Logan's age. We pulled it out last week and were amazed at the sounds that Logan recognized, some of which he has never actually heard. It has quickly become his favorite game and asks to play it any chance he gets. Even after watching him play it over and over again I still love to watch him get so excited when he hears a sound...he points to his ear and opens his mouth wide. So fun!

Monday, February 25, 2008


Ahhh...the dreaded IEP (Individualized Education Plan). It shouldn't be "dreaded", but with the lack of the school district's funds and deaf educators, it is! Each public school child who receives special education and related services must have an IEP. The IEP creates an opportunity for teachers, parents, school administrators, related services personnel to work together to improve educational results for children with disabilities.
The night before, Jake and I wrote out our "wants", our short term goals for Logan and our long term goals for him. I was really prepared and eager to get what I felt was needed for Logan to get the best education possible. When I arrived I sat down at a round table with 6 other women starring right at me. They consisted of an audiologist, a deaf education speech therapist, a psychologist, another speech therapist, a deaf education teacher and Logan's in home therapist that he's had for about 2 years. They all went around the table and gave their report about Logan (an assessment of him was done 3 weeks earlier by each person there...very stressful for a 3 year old :) ) They then proceeded to tell me his short term and long term goals...wait a minute, I don't get an opinion? I don't get to express what I think the goals should be regarding MY son? After 30 minutes of that, they handed me the document and asked me to sign it stating that I agreed with it. I proceeded to pull out my (very nicely typed) paper of what Jake and I had come up with the night before. I was stating the services that I wanted to fight to get for Logan (such as more therapy sessions, a home FM system, etc.) when one of the women proceeded to say, "what's the use, you are just moving in June anyway." I then understood why the meeting had gone the way it had. The school district was unwilling to invest time in Logan since he was not going to be a student in their district permanently, only the next three months. It broke my heart. I understood (a little) where they were coming from but I tried to explain that this IEP would be carried over to Florida when we get there and that was the reason for the requests...something they should have already known. Well, hopefully it works out in our favor!

Sunday, February 24, 2008

So, I needed an extra day to come to a decision. Jake has always felt good about doing a second implant, but I wanted to be sure for myself before we went ahead with the surgery. So many things have been going through my head. Right now when you look at Logan you see "Logan", I was afraid that with two implants you'd look at him and see the implants instead of him. I didn't want to take that away from him, but I would hate myself if I didn't give him the chance to be his best self. I also didn't want him to have to sit in the front of the class room just to do well in school. I wanted him to have the chance to be as "normal" as possible. I actually told a friend of mine that I felt like a bad mother because I couldn't come to a decision on something that should be so obvious. Thursday night Jake and I knelt down and asked for a feeling of peace with going through with the second surgery. Friday morning was "Sibling Day" at Logan's school so Tanner was able to miss school and come with us. Jake also had his patient cancel, so he came along too. Tanner attended a class for siblings of deaf children. They taught them a lot about the disability and things to do to help their brothers/sisters learn to speak. After the class, Tanner asked me if Logan had two implants would it help him talk better and if so, he really wanted him to have two. . .and that's when the peace came. I knew then that the right decision was to have the surgery done. We are going to try to rush the process, so hopefully we can get a surgery date soon. I’m still a little nervous, the last surgery is still too fresh on my mind, but he’s such a brave little boy, I have no doubt he’ll do great.

Wednesday, February 20, 2008

Another surgery?

This question has been eating at me for the past 3 months. Do we get another implant for Logan in his left ear? The question seems obvious, since he's deaf in both ears, wouldn't you have implants in both ears? I wish the answer was that simple. There are pros and cons to both situations. The research out there on a child with one implant verses a child with two really isn't that different. It seems that the main advantage he would have would be localization, being able to distinguish where sounds are coming from. I have been losing A LOT of sleep over this (hence the 1:00 am post) and can't seem to know what is best. We have seen more progress than we ever expected in this short amount of time with just the one implant, so part of me wonders if he needs two. I asked Logan tonight if he wanted another "ear" on his other ear. His face lit up and he shook his head. If only he fully comprehended all that that would entail...or maybe he does. The ideal situation would be to see how he's progressing in 5 years and decide then, but that isn't practical. If we are going to do it, we'd like to do it before we move in June. I really want to make the right decision for him. Part of me remembers his surgery day and the horror of it all. I can't bear to see him go through that again, although I realize that is a small price to pay for the reward in the end. Jake and I have decided to make a decision by Thursday night and take that decision to the Lord.

Friday, February 1, 2008

"The Beauty of Holland"

I was given this today in the parent class of Logan's school. I loved it and had to share...

"I am often asked to describe the experience of raising a child with a disability-- to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...

"When you're going to have a baby, it's like planning a fabulous trip--to Italy! You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. The Michelango David. The gondolas in Venice. You even learn some handy phrases in italian. It's all very exciting.

"After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The flight attendant comes in and says, 'Welcome to Holland.' 'Holland?!?', you say. 'What do you mean Holland? I signed up for Italy. I'm supposed to be in Italy. All my life I've dreamed of going to Italy.'

"But there has been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place full of pestilence, famine and disease. It's just a different place.

"So you must go out and buy new guide books and learn a whole new language. And you will meet a whole new group of people you never would have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around and you begin to notice that Holland has windmills. Holland has tulips. Holland even has Rembrandts.

"But everyone you know is busy coming and going from Italy, and they're all talking about what a wonderful time they had there. And for the rest of your life you will say, 'Yes, that's where I was supposed to go. That's what I had planned.'

"But if you spend your life mourning the fact that you didn't go to Italy, you may never be free to enjoy the very special, the very lovely things about Holland"

--Emily Perl Kingsley


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