It a Go!

Today Colton had his pre-op to be sure that he could have his surgery tomorrow. The doctor checked his ears for fluid and made sure that Colton is healthy enough to have the surgery. He has approved it and we are ready to go. We have to check in at 6:00 am and the surgery should be 3-4 hours. We are going to implant both ears. Recovery time is 5-8 days. It is an out-patient procedure and we aren't planning on staying the night, but it is open if we need to. We are being flexible because of Colton's medical history.

We are nervous about the surgery, but super excited that it is finally happening. This is going to change our life as we know it. We still have a long road ahead of us, but this gives Colton the chance to hear and speak. It breaks my heart to think about the pain that we will be putting him through though. I tear up just thinking about it. But the benefits outweigh the downsides. And we are ready to move forward.

The doctor marked both of Coltons ears with a "y" to indicate that they will be implanted.

Of course, we can't visit the doctor without spinning the doctor's chair. It is one of his favorite things to do.
Waiting for the doctor to come in and check out his ears.

Welcome to Holland

I found this on a support group page that a friend put me in touch with. I like how it describes some of the emotion of what it is like to have a child with a disability. It is still hard to tell people what it is really like. All the emotions that you do feel. How it changes your whole life. But it does a good job of making it more real. I also like how it talks about the disappointment that you feel when you find out about the disability. As a parent, you don't want to feel that disappointment in your own child, but the truth is that you have to mourn what it is that you have lost. That is something that we don't talk about a lot.

Welcome To Holland

by
Emily Perl Kingsley

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 vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may 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 stewardess 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's 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 you must learn a whole new language. And you will meet a whole new group of people you would never 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....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging 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."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

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

2 weeks and counting

Coltons Implant surgery is 2 weeks from today. We received notification of his pre-op appointment the day before and it made it more real for me. As we get closer, I am starting to get the pre-surgery jitters. I am worrying about everything. I think that if I don't stop I am going to make myself crazy. We still feel that this is so important for Colton. As nervous as I am, I am still anxious for that moment when they will turn on the implants and he will hopefully be able to to hear my voice for the first time. I know that it will be a big transition for him. Hearing sounds that he hasn't heard in his 2 years of life will be overwhelming for him. I know that this isn't a "fix" for Colton. I am still going to use ASL and try to give him every bit of language that I can. But I am excited for this opportunity for him.

The bad news has been that Medicaid only approved 1 implant for Colton. We really need to implant both of his ears because of his auditory neuropathy. If we only do one, there is a high chance that it won't work well because his other ear would interfere because he does hear some sound. I have been told by other families that deal with auditory neuropathy that their kids describe it as "static." All these families have implanted both ears because the first ear wasn't enough. It is frustrating that medicaid won't pay for both ears. Especially because we are paying a monthy "spend down" to have medicaid. It isn't free for us. We are paying for it. They also don't care about the medical reasons for needing 2 implants. They just don't want to pay for 2. As of right now, we are still going to go ahead and do both. I don't know what that means for paying for it. I guess that is a battle we will have to fight later.