Sunday, November 9, 2008

"My son has what?"

I received a very interesting phone call from the surgeon's office last week. Here's how it went:

Dr. Antonelli's assistant: So Mrs. Cragun everything looks good to go forward with the surgery, we are just waiting for insurance approval. The doctor looked at the CT scan and other than Logan's birth defect, everything else looks normal.

Me: I'm sorry, did you say birth defect?

Dr. Antonelli's assistant: Yes, Logan's E.V.A.S.

Me: His what?
Dr. Antonelli's assistant: His E.V.A.S., enlarged vestibular aqueduct syndrome.

Me: You'll have to start over, I have no idea what you are talking about.

Dr. Antonelli's assistant: Mrs. Cragun, your son has E.V.A.S. This is the cause of your son's deafness. Is this the first you are hearing of this? What did your previous doctors tell you the cause was?

Me: We were told that every possible test was done and that the cause of Logan's hearing loss was unknown, so yes, this is news to me.



After the call ended I immediately Googled Enlarged Vestibular Aqueduct Syndrome. I learned that E.V.A.S. is the number one cause of progressive hearing loss and the only cure for it is Cochlear Implants. A ton of questions went through my head. Why is this the first I was hearing of this? It's not like it is uncommon. Why wasn't Logan tested for this sooner, especially since they knew he had a progressive hearing loss? Why did his first surgeon not see it on the CT scan? I became confused and upset at our previous doctors in LA. I couldn't help but to think, "what if". If Logan had been tested for this when he was younger, he could have been implanted by age one (which is recommended). If the doctor had seen it in the CT scan last year, they would have known that Logan needed the second implant and we wouldn't have had to fight them for it (and fail) like we did. We had struggles with our audiologists and doctors in LA from the beginning and I feel like this just put me over the top.

Knowing this new information doesn't change the future much and I know that. Logan is still getting the second implant and that's what is important. But I think as a mother, you become upset by feeling that your child was not fully taken care of. I look at the struggles he is facing right now and how he is now starting to really feel the effects of not being able to communicate with children his own age. I can't help but to think that we are two years behind in his progress because he was not diagnosed and implanted 3 years ago.

Someone asked me, if it makes that big of difference that we know the cause, because it doesn't change much of anything--and they are right. But knowing that Logan has E.V.A.S. and that his left ear will FOR SURE become progressively worse, helps me feel peace now in getting the second implant done. I have been slightly nervous not knowing if we were doing the right thing or not, I know now that we are. Once again, I am grateful that we followed our promptings to pack up our family and move across the country. I know that a lot of this move had to do with Logan, we are so happy that things are all coming together.

8 comments:

The DeVito's said...

I'm so glad they are making progress! I don't know if I told you, but we share a building with a deaf branch and all the missionaries have c.i.s. Most of them talk completely normal and all of them you can definitely understand completely. Just thought that might give you some hope!

ASL yia yia said...

What a wonderful and lovely blog! I'm a teacher consultant for babies and toddlers who have hearing difficulties, including loss and deafness. May I share your blog with my parents. They will love the insight and hope you have. They may also have a lot of questions to ask you.
Barb

hearmehearmenot said...

Wow... I would have a reaction like yours also, I think.

We were always told that "there's no way to know" (why our son has mild-moderate hearing loss), and that he was "probably" born with it (because this was pre-testing days).

Of course, inquiring minds would like to know... and, I'd have many of the same questions as you do... mainly, the "why didn't they tell us this before?" part.

BTW - Love your blog here. Martina can sing!... =)

debcny

Melanie said...

Sorry you had to find out that way. Noah also has EVAS but was born with no hearing.

mbishopp said...

hey, it me.

I am grateful that you were able to find out. it is like a mystery story solved.
Alexaner has his surgery date for c.i.'s. When is Logan looking to get his second implant?

Perry Family said...

Celeste, that is amazing! I would be furious too. But how wonderful that moving all the way to Florida was the right thing to do, esp for Logan. I have the goosebumps!!

Mom to Toes said...

Oh my goodness! I can't believe the earlier docs never found the cause... and I'm even more shocked you found out the way you did! That is just beyond words.

I am glad you have answers now. I know if we had never found the cause of Erin's loss, it would have made me crazy wondering.

Jen said...

That's great that you found out. I could feel how furious at the doctors you would be. But now you can change the part in "Logan's Story" from not knowing why, to the reason.

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