Thursday, December 4, 2014

another saga for Abel's ears


I think I'm mostly writing this for documentary purposes or perhaps as a way of updating family all at once, but it might be a little bit because I feel like I need to talk about it. I've tried looking at the bright side of the last few months- my deaf child now hears! But because we've had our share of problems since the surgery, there has been a black cloud above it all (a small one, but one just the same). For months, Abel has battled ear infections, Bell's Palsy, balance issues, the flu, and more. This was a happy child. This was a healthy child.
I think his medical professional team is finally starting to listen to me, to my gut, that something is wrong. He has been on every antibiotic known to man. He's taken steroids, ear drops, and tylenol for days because he is so often in pain. I despise pumping all this medicine in him and not ever seeing much improvement. I hate seeing him uncomfortable.
Yesterday was interesting. I loaded up three small boys and drove for at least six hours. I sat through two appointments and an hour and a half break in between. It was miserable, really. What I learned was even more upsetting. Still, Abel has fluid despite the ear tubes. Furthermore, he is no longer responding to most sound on the right side. This was tested in a sound proof booth. His left side remains very consistent, but he may have heard one prompt with the right side processor at the very loudest level. There were no responses after that. Then when he was hooked up to testing equipment, it was revealed that the nerves aren't being activated. His audiologist called me today to tell me that she has never seen much of a response in that test on that side. She said she had hoped it was due to the infection (and she still does), but -knowing the answer -I asked her what the worst case scenario was and she said, "It could be that the implant is failing and needs to be replaced."
Obviously, that's the last thing I want. (*She did add that she didn't think I should worry about that just yet)
His speech therapist received the information from the audiologist and decided to test it in Abe's session this morning. Sure enough, he seemed to hear some things, but he was much less consistent on that side. She is hoping it was an issue with the processor (outside portion) that was set to be replaced anyway because of a broken ear piece. We received the new one today and his speech therapist said she would come by tomorrow to work with him some more after she got off work to see if it was any better.
Meanwhile, I got a call from the surgeon. That's when this all started to sink in for me. He ordered more medicine and broke the news that Abel had to have yet another procedure that requires anesthesia. Yesterday was his second birthday. Christmas is coming soon. I hoped so badly that his recent ear tube re-insertion was the last surgery of the year. He will soon be sedated for a CT scan to look around at the infection site and to make sure the implant hasn't moved. I'm so sad for him.
I hope that one day I can look back on this as most cochlear implant parents have told me and say that it was all worth it. I have faith that I will, but right now my little man is going through so much and I wish he wasn't hurting.
Despite his hurdles, he is still doing great with what he is hearing. Just today, he said "ow ow" (for out. out!) and "mo" for more. It's incredible to hear a deaf child begin to speak using words appropriately and not simply repeating. There was a time that I hardly thought this day would come.

Thank you for praying with us. If you could specifically pray that the infection and fluid would go away, that the implant is in the right spot, and that my sweet Abel starts feeling better I would appreciate it so much.

A year ago today, I was blissfully unaware of what the following year would bring. I was amazed that I had a one year old and a two year old. I had no idea I was pregnant with our third. It hadn't crossed my mind that Abel was deaf. I didn't know how hard this first year would be, but God has brought us through it so far and I'm grateful. I believe He is teaching all of us different lessons. I trust Him. I do.

6 comments:

Jenna said...

you all (and abel specifically) are in my prayers. I know this road for all will not be easy but remember you are strong. Abel is strong. You all will get through this rough patch and be better people for it. Again continued plans.

Lisa C said...

Continuing to pray for y'all!

Bethany and Isaac said...

I'm so sorry that things are continuing to be extra difficult. :( I will keep praying!

Jen said...

Sending lots of good vibes your way! I hope the fluid and infection go away! Hugs!

JG said...

Absolutely praying for quick healing!

erika said...

Bless his heart. Keeping up the prayers.

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