Monday, October 2, 2017

Decision Made.

It's been far too long. Only appropriate that I follow my last post was about the decision as to whether we should get Logan a cochlear implant with this...decision made.

Logan is getting a cochlear implant. It took us 15 months to make the decision. Surgery is scheduled for November.

We met with the surgeon for the pre-op appointment last week. When he asked if I had questions, I broke down. The tears started to fall. I am anxious, I told him. Jokingly, he said that he won't charge us for the $50,000 device that Logan is going to get, but for Kleenex, I'll have to pay. (We actually don't pay a cent for all of this.) He reminded me that some anxiety is normal. I know this. He stared me in the eyes and said, "I'm not anxious about this at all." That made me smile. He explained that this is a study and as a result, surgery must be done perfectly with minimal risk. He performs four cochlear implant surgeries per week and has been doing them for twenty years. It's going to be ok and I'm just trying to breathe.

When we received Logan's diagnosis, I immediately went into research mode. I was determined to learn as much as I could and speak to as many people as possible so that we could make the best choice for our child. I don't think I truly let myself grieve his hearing loss. I just wanted to fix it, knowing full well that hearing loss can't truly be fixed. After 15 months of it being a maybe, it became a definite. A definite with a date for a life-changing surgery on my baby boy's brain. It completely overwhelms me. The tears fall often and without warning. Thoughts and worries fly through my head in the middle of the night. I know in my heart that we've made the right decision but that doesn't make the next few months any easier. It's all coming out now.

So, why? How? What was it that helped us make our decision? Right after Logan's diagnosis, I was in touch with a mom of a boy who is about four now. He is unilaterally deaf, although I don't think his is quite as severe as Logan's. He does not have a cochlear implant, but his mom and I chatted about hearing loss and its challenges. We've been in touch and I recently wrote her to let her know that we are going ahead with a CI. She asked if I would mind sharing our decision making process. This is what I wrote:

We both walked out of our first appointments at Sick Kids saying 'no' to a cochlear implant. After a couple weeks of processing it all, I realized that I needed to learn more so that, in the future, I could explain to Logan why we made the decision that we did. 

I went to the Bob Rumball Centre (for the Deaf) and met individuals in the deaf community. I requested to speak to parents who have a child with SSD (single-sided deafness) and went ahead with a CI at Sick Kids. I joined Facebook groups from all over the world -- parents of children with CIs, parents of children with SSD, adults with SSD....I posed questions to these groups and scoured past posts. It was here that I started warming up to the idea of a CI for Logan. 

We all seem to know at least one adult who is deaf or partially deaf in one ear. I started speaking to those people too. They've lived happy and productive lives for sure, but it has not been without its challenges. One of my brother's best friends is completely deaf in one ear, like Logan. We spoke extensively. He explained the challenges of going to restaurants, work events, riding in a car, the fatigue etc. He is managing but it can be tiring and frustrating.This was a story that I heard over and over again from individuals with SSD. In adulthood, he had an MRI to see if he is a candidate for a CI. Sadly, he is not. He said that if this had been available to him as a baby, he would have wanted his parents to go ahead with it. Most of the adults I spoke with said that the challenges of SSD started presenting themselves once the children started school. This was a big one for me, as Logan's speech and language is currently on par or better than his peers. For the most part, he seems like any other child who has bilateral hearing. However, I have noticed his challenges in localizing sound. 

I've spoken with three parents of toddlers who received cochlear implants as part of this study. Two of them are nearly 2 years post activation. One of them was activated in January. All three parents said, without a doubt, that it was the best decision they could have made for their child. Testing is showing that their child's deaf ear is now hearing within "normal" ranges. This happened in less than 6 months post activation. 

In the future, he can choose to take the device off whenever he wants. Even though we are making this life-changing decision for him, we are ultimately giving him the choice. That was the only thing that the two of us could agree on for months! 

I spoke to the mom of a 22-month old boy, who received his cochlear implant earlier this year. The conversation with her couldn't have come at a more perfect time. While my anxiety and worries are still there, she has given me an idea of what to expect. It feels all-consuming right now, but she assured me that it is just a regular part of their daily routine now. She was me a year ago, breaking down in front of the surgeon. She gets it and that's more comforting than anything else. Within months of her son's surgery, he was hearing within a normal range in his CI ear. That is truly amazing to me. We are meeting up with this little boy and his family very soon.

We were born with two ears. We are meant to hear with two ears.


Logan and Finn

With his beloved "ba-pa"

On their first day of grade one

A trip to the zoo with their cousin

Hiking in Portugal. General update post to come :)

3 comments:

  1. There is no doubt whatsoever that you and J are making the right choice for your child. I admire the extensive research and time you took to get here.

    Best of wishes (concerning the anxious months ahead, as I know the surgery will go seamless) to you all. Please keep us posted, although obviously us here in this space is not a priority BUT we do care ❤️

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  2. PS: seriously am in love with that last photo from Portugal. Needs framed!

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  3. Great to see an update!

    It sounds like you did a lot of thinking and researching in order to make the big decision and no matter what he thinks as an adult, he can appreciate that you did right by him. :) I'm sure it will go well--it sounds like a routine procedure for the doctor.

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