Wednesday, July 27, 2011

Do you Hear what I hear?

If, by chance, you are Maggie - the answer is definitely "NO".

When Maggie went through her massive chemo, we were told of lots of potential side effects.  At the time, the one you want to hear most is "cancer-free".  We did know that hearing damage would happen - as part of all of her scans and tests she had 2 or 3 different hearing tests at Riley.

Our last one at Riley was in December of  '09 (I think) and we were told that the effects of the chemo could take 3 -6 months to see the full effect on her hearing.  We found an audiologist here in Bremen - yes we were shocked too! and got her in and got her hearing aids.  For those of you who don't know, she picked pink and purple swirls for the molds (the part that sticks in her ears) and the part that hangs on her ears are still beige.

Around home, we don't notice her hearing issues much - it is quieter at home, not so many extra noises, not so many people etc etc.

However, lately it seemed I had been yelling TO her much more.  Being a loud person has come in handy with her.  At the pool or waterpark I think that she can hardly hear.....lots of people, noise of water and the inability to wear the "ears" in water....I had to yell often for her to be able to hear me.  I am sure we are quite a site.

So with her starting kindergarten in the fall, I wanted to get her a checkup with the audiologist.  We went in a little over a week ago.  She did a hearing test with and without the aids.

When it was done, the audiologist told me that that Maggie's hearing has decreased significantly.  This was (still is) pretty surprising since it is 18 months + after her last chemo. [Wow!  As I think about it - we are approaching 2 years on that - last week of September '09]  I truly didn't think that her hearing would be decreasing this far PAST her treatment.

For the first time, the audiologist mentioned a cochlear implant!  My heart about sunk.  Ok, I think that it really did sink. So I asked about cochlear implants.  I've had well-meaning people suggest them to me yet never the docs.  What I learned is that the implants are used for people that hearing aids cannot help.  Right now her hearing loss would be probably considered profound without the aids and Moderate with the aids.  So they are working.  IF one chooses to have a cochlear implant, then it removes whatever hearing that the person has on his/her own therefore making the implant irreversible.

We are seriously thinking about learning sign language as a family.  Just as a help to her - and maybe...hopefully.... reduce our yelling?  :)

I know that a cochlear implant is nothing in the whole scheme of things.  It is just ANOTHER thing that we are having to really watch and wonder how this will impact her future.  Yes she is cancer free and is so much better off than other Neuroblastoma patients.....

The other day I was trying to tell her of Heather Whitestone - the Miss America from quite a few years ago that was deaf.  Rod started mocking me as he wasn't as impressed with the Miss America issue.  I knew tho, that she would like that! :)

So that is a little glimpse into our world.  If  anyone knows a good, efficient, and cheap way of learning sign language let me know. :)


  1. i have 2 friends that graduated from bethel with sign language interpretation as their degree. i have written both of them an email explaining your situation a little bit, and am waiting on a reply. will let you know if i get one :) good luck!

  2. This sounds like such a difficult decision to make for your child. Sign language would be good for the family I would think. I would also think that if Maggie attends public school there might be assistance in helping her learn, that is a guess though. I know there would be assistance in "translating" her classes.

  3. Hi there! My name is Myra and I live in Weslaco, Texas. I found your blog by coincidence (I think God intended me to find it). I am a 33 year old neuroblastoma survivor! I loved it see that your baby survived it too!! God is good!!! Many blessings to you all!

  4. visit my blog and read about my story at



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