A Little Whine With My Cheese

This post is going to be whiny. Consider yourself warned.
...

I signed up for a gym membership. Five years of parenthood, and the stresses of having a child with hearing loss, as well as the stresses of every day life, have not been kind to my body. Sure, I pretty much look the same as I did PB (pre-babies), but I don't feel the same. So, I decided to be selfish and do something for me.

In order to get myself to the gym, I knew that I would need to join a gym with a children's center. With our crazy work schedules, this ensures that I can get my workout in, even if Drew's Dad is out of town or working late. Great idea, or so I thought. The very first night that I left the kids in the play place, all of the older children made fun of Drew and his ears. How sad is that? So, after my workout, as I'm tired and ready to head home, I have to deal with hearing about how all of the other children in the play place were whispering and talking about Drew and his ears. Sucks.
...

I've finally made the big decision to enroll Drew in swim lessons. We are heading to Disney World for our first family vacation in 46 days, not that I am counting, and I thought it would be a good idea to introduce Drew to real swimming before our vacation. Well, today I had a little pity party for myself about how hard it is for me to get him to swim lessons. I have to bring his spare left ear parts. I have to put them in the waterproof food saver bag. I have to turn it on, take his other ears off, hold the ear, in a bag, on his head while trying to put a swim cap over it to hold in place. It sucks that he can't just run and jump in the pool like the other children. And the alternative, him not being able to hear while in the pool, is unimaginable.
...

Drew loves sport. Seriously loves them. But his ears are always falling off. He has to stop and start playing so many times in a day just because his ears come off and he needs them put back on. And now, he has decided that he enjoys boxing. (I blame that one on his Daddy and the Wii.) Well, he wants to take his shirt off to box. Well, in order to do that, he knocks his ears off and then needs them put back on. It sucks that he can't just play what he wants to play, when he wants to play without having to make sure he can hear.
...

I am finished. Now back to our regularly scheduled (cheery) blogging.

Nucleus 5 Upgrade

Cochlear has developed a new external processor, called the Nucleus 5. You can read more about it here, and find many of the new advantages and features that come with the N5. One of the reasons that we chose the Cochlear brand is because all of their current implant recipients can benefit from their technological enhancements and upgrades, regardless of time since implantation.

We have begun the process of submitting for the upgrade through our insurance provider. Cochlear is working with a company called Access MediQuip to assist with insurance coverage for the upgrade. You can contact them at (866) 586-8083. They will ask you to provide you insurance information. Your audiologist will need to provide a letter of medical necessity. More information on the upgrade process can be found here. We should hear something in about three weeks regarding approval (or denial).

Speech Therapy

Since Drew began school in September, I haven't had an opportunity to see any of his therapy sessions. It's funny how I went from being so involved in every little thing in his CI/therapy life to really having little involvement. Sure, I get weekly notes, and am given "homework" to do with him in the evenings or on the weekends, but it really is different from our life the previous three years!

I decided that I wanted to see how Drew was doing in his therapy sessions. Drew's teacher and SLP are fabulous (seriously, we are so lucky to have such wonderful people working with Drew) and they are so willing to let parents observe their classroom and small group sessions. Here is Drew, in action, at one of his most recent therapy sessions:



I can't believe how big my little boy is getting! He just amazing.

What Does the "Wrong" Ear Sound Like?

On rare occasions, Drew's Dad or I will accidentally put the "wrong" ear on Drew. We'll put his right on his left or vice versa. Each of Drew's processors is specifically programmed for an individual ear. For some CI users, their programs on each ear are nearly identical, so mixing them up won't create too many problems. Sure, hearing won't be maximized, but there isn't any tell tale sign that there is an issue.

That's not the case for Drew. His maps on his two ears are quite different. His right ear requires so much power that we actually had to go to a wider pulse width than his left ear. As a result, mixing up his right ear and putting it on his left causes him pain. It is "too loud", as he has told us in the past. And we always know when we've put the right ear on his left because he cries out in pain.

Now that Drew is a bit older, we were able to ask him after this most recent mix up what putting on the wrong ear actually sounded like. Here is Drew's response:

How I Feel?

This post by Christian and Lily's Mom does an excellent job of describing my feelings about Drew and his hearing loss. I think I do "have it together" most of the time, but there are always occassions when the reality of Drew's deafness, and how it will affect his entire life hits me like a ton of bricks.

It's not-so-much the silent time during bath, or the inability to communicate well during the night that worry or upset me, because we've become so used to handling those situations. Drew is becoming excellent at lip reading, and between that and gestures, he does well understanding what we are telling or saying to him.

But the fact that he is deaf will impact him in many, many ways. Not just in the classroom, where he'll likely miss pertinent information that could affect his progress. But how will his deafness impact his friendships? If he is at sixth grade camp, sleeping, and can't hear all of the boys sneaking out in the middle of the night to torment the girls cabin, not that they should, but they are boys who are going to do mischievous things, he'll miss out on that. Tiny little events that bond friends together. I know it is silly, I know it is irrational. But life with a hearing child was taken away from us. Drew is deaf. And sometimes that is just hard to accept.