Friday, April 06, 2007

A Heavy Heart

The surgery itself was a success. Crew is ornery... to be expected. After putting tubes in his ears and removing his tonsils and adenoids the audiologist was able to obtain an ABR. He hasn't had an ABR since birth only the hearing tests using the sound booth. The ABR is much more accurate and reliable. I really thought Crew was playing games in the sound booth that he really could hear but was acting "shy" or possibly "zoning out". Sometimes Crew zones when he is in a situation that he doesn't like. Or so I thought.

The results of the ABR confirm that Crew's hearing loss is progressing. I'm shocked. My heart is torn. It just can't be! Yet, the numbers play over and over in my mind. And I wonder... how much longer until he can no longer hear my voice:(

Secondly, I felt we had his seizures under control but the audiologist reported at least 3 seizures during the 45 minute hearing test. One was at least 4 - 5 minutes long. And I wonder what is happening to my child? There are so many questions in my head and my heart aches.

7 comments:

  1. I am sorry to hear about the hearing loss. I know it must be so hard for you. I don't know how I would feel. I remember when we were diagnosed with Plus disease on his eyes crying because I didn't think my baby would ever see our faces. I can't imagine. I guess you spend the next little bit teaching him I LOVE YOU in sign and telling him a million times how special he is. I know that actions speak louder than words... Your actions are screaming LOVE!!!

    Nancy

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  2. I'm not sure what I can say. BIg (((HUGS))) to you and lots of prayers for you and your family.

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  3. I am glad the surgery went well.

    I am sorry about the test results.

    I hate not being able to fix things.

    Very big hugs!

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  4. {{{{HUGS}}}}
    so sorry :(

    I'm glad the surgery went well, hopefully you'll figure out the rest of it.

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  5. I am glad the surgery went well and he's recovering :)

    I am dissapointed for you about the test results and the seizures. I wish I had the answers as to why they happen.

    Sending all our love ((hugs))

    Angela

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  6. Wow - big hugs. Hearing loss from the seizures and seizures that you can't even see without an electronic device like the ABR machine. That is rough. Thanks for sharing this though because it might explain some things that are going on with Ellie right now. I always think of seizures as having an obvious behavioral component - but it's clear they can be subliminal too.

    Ellie is on Depakane for seizures as much as I hate having her on a med because we are dealing with some side effects from it. Rock and a hard place for sure.

    It looks like you are doing all you can which is why Crew is a lucky boy to have such a great mama.

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