Tuesday, September 15, 2015

Onward

In full disclosure, after my last post, I stopped working out. Now, it's not because it was too hard, or I didn't have enough time. It was because I was starting to gain weight. I was eating back about half the calories I burned, (because I couldn't decide if I needed to at all), and I was working out twice a day. Whether I was pushing too hard or what, I decided to just forgo the strict workout regimen and focus on food. I am proud to say that I am down nearly 20 pounds, so I'm pretty satisfied :)

Also, Jillian started preschool! I'll save that for another day.

There is one final thing that happened I have no mentioned yet. {Not a pregnancy announcement} After the initial news, I wanted more information before I started going public with it. Here it goes...

Dear friends, Jillian's hearing loss has changed. Basically, her left ear has been compensating for her right ear so well, (I mean, she hears AMAZINGLY well in her left!), we were not able to truly see the level of loss in her right ear until her last booth test in August. They were able to do background noise in her left ear, while doing the "beep beep beep" sounds in her right. We always knew she had moderate to severe loss, but it is actually to the point where it is considered profound. She is not completely deaf in that ear, but it's the step above complete loss. That was hard to hear, even though I knew it was unlikely to stay moderate to severe her whole life.

Which brings me to this. Due to new research out, if she were born this year with the exact diagnosis she had at birth, the hearing clinic would recommend some type of hardware, (meaning either hearing aids or a cochlear implant depending.) Due to the fact that her loss is now considered profound, she would benefit most from a cochlear implant. I had read research before that suggested she would need some type of hardware eventually, so I was already prepared for that. Phil and I prayed, and discussed it with a few trusted consultants, and decided we want to move forward to give Jillian the best quality of life she can.

Now, don't get me wrong. We are well aware of how smart and verbal she is. Most people close to us forget that she has loss at all. And just try to tell Jillian is has a problem hearing. She would laugh in your face! She is an incredible little girl, and hearing loss is not an end of the world diagnosis. It's not as scary as cancer, or as debilitating as other things children have to live with every day. It is still a big deal to our family. It still affects us on a daily basis. It is still something I want to make sure Jillian never feels held back by. I want to give her the world, and I want her to believe she can have it. This device would help with things we take for granted. Things like, talking to your friends in a crowded lunch room at school, getting directions from your passenger in the car, and hearing a teacher's instructions during a fire drill. These are things that are, and will be, challenging for Jillian.

Phil and I met with Jillian's audiologist and speech pathologist yesterday. They gave us the bottom line. This would benefit Jillian in many ways, and this would be the time to do it.* However, most insurance companies will not cover a single cochlear implant, and therefore not many surgeons, including Jillian's, are able or willing to do the surgery. The out-of-pocket cost is outrageous. So, we are in a small group of people at this hearing clinic in a strange boat. We have a need, and a solution, but have no easy way to get from point A to point B. The clinic is working with us to come up with solutions, but it will be a long, yet quick road. Long because we're going to have to be vigilant and constantly advocating for Jillian, but quick because we only really have a full calendar year before this window will close.

*The window of time I keep talking about basically boils down to this: Jillian's brain is still , for lack of a better word, pliable. If she had this surgery, her recovery time would be quick, and her brain would have less challenges to rewire itself as it learns to hear with an ear that has never used those nerves to hear before. If we wait too long, we risk not only her not being able to adjust, but her brain would have a harder time. She would then most likely not use the technology, and therefore waste time and money on this procedure. That is why we only have until she's 5 at the latest to do this surgery.

I did leave the appointment feeling at peace. I really struggled with the idea of this surgery for Jillian because I wanted this to be for her and not me. I wanted to make sure this is the right decision. After our meeting, I knew deep in my heart that this is the way to go. Now we just have to figure out how to get there.

It makes me so mad that the research is there, and it's the exact same surgery they do for children who need it in two ears. Yet, they can't seem to agree to do this. I mean, if you were blind in one eye, would you just let the insurance company tell you they won't help you medically because you can see well enough with the one eye that you will live a relatively normal life? Of course not! So why is it that way with hearing? If the technology is there, and the research backs it up, why not?!

One of the options we may have, (it's not set in stone yet), is a trial through a medical clinic. It's not experimental, but it's considered a trial because it's not FDA approved yet. This would not only help Jillian, but potentially help other kids in her situation in the future. We're waiting to hear if that is an option or not.

So the next year is going to be hard, and interesting. We've got a few things in mind to get the ball rolling, but for now it's a waiting game. We always appreciate prayers, and positive vibes! We have a great support system, and know that whatever outcome happens, it's going to be ok :)

Bravely onward!

5 comments:

  1. That is amazing (and frustrating) news. We will be praying for all of you during this time. Please let me know if you need anything!

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    1. Thank you so much friend! Your support means a lot to me :)

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  2. I think you did the right thing. I will keep you in my prayers.

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    1. Thank you, Linda! I appreciate your prayers.

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  3. I think you did the right thing. I will keep you in my prayers.

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