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Shelley Lill
11/4/2015 6:46 PM
Almost five years ago to the
day, our son Thomas was diagnosed with a bilateral profound hearing loss.
To make it even more difficult, only a few short weeks before we were
told that he was severely visually impaired. What overwhelming news for
parents! On the long drive home from Children's Hospital in Pittsburgh, I
had a lot to think about. I did not know any children with a hearing
loss. How do we communicate with a baby with deaf blindness? The
audiologist had mentioned something about trying to correct it...what did that
mean? What would that entail for our infant son? Shortly after that appointment, we had a
follow up with the audiologist.
Thomas was fitted for tiny
hearing aids. I didn’t even know that
they could make them so small! When he
was six months old, he was aided. There
was no reaction like the cute videos that make their rounds on social
media. We then made an appointment to
discuss the Cochlear Implant process.
Unfortunately, because of other health concerns that he had been facing
at the time, he was not a candidate. Fast
forward a few years, the idea what brought up over dinner with my family. Again, we made an appointment, but it needed
to be moved around for several different reasons. We felt that it had been a sign that it was
not the right time.
We now jump to January
2015. Thomas was aided with a new, more
powerful set of hearing aids. After not
responding to them in any way, my husband and I felt that it was time to
seriously pursue the possibility of an implant.
We spent many hours making pros and cons lists, researching, asking
advice from parents who had made the decision for their children, even going as
far as asking strangers that we noticed wearing implants. I made an appointment for him and we began
the process. We first met with his
ENT. He gave us a list of things that
needed to be completed before they would consider him for candidacy. It almost seemed like we were on a scavenger hunt! I immediately made an appointment for his
MRI, his meeting with the neuropsychologist and the speech therapist. He passed those with flying colors and was
indeed a candidate for the implant.
Surgery was scheduled for
October 5, 2015. My husband and I took
him down to a hotel the night before. He
knew something was up when we arrived at the hotel…without his big
sisters! Monday morning came and we took
him to the hospital. He was such a brave
little boy. I was so proud of him. The surgery lasted three hours and he made it
through as good as could have been expected.
My heart absolutely broke seeing him for the first time after
surgery. I truly second guessed having
made the decision to have him implanted.
Watching him in pain was heart wrenching, but I was hopeful that the end
result would outweigh any of the discomfort that he was feeling at the
time. He came home the next day and
stayed home from school for the rest of the week. He did really well with the healing
process. I was very pleased with the
outcome. The audiologist allowed us to
borrow a model implant so that he could practice wearing it, almost as to desensitize
him so that he wouldn’t fuss with them.
Surprisingly he let them alone.
Now, as I sit here on this
warm fall evening, a rarity for November in Pennsylvania, I write with anticipation,
as Thomas’ Cochlear Implant will be activated tomorrow! It is almost the same feeling I had the
nights before my children made their entrances into the world. The dreaming, the hoping, the thoughts of
what should I say to my son the first time that he hears my voice? I am realistic that he won’t understand my
words. I understand that it will be
scary…not only for him, but for my entire family! This is the start of a (huge) new chapter in
the book that we call life. And I couldn’t
be more excited to write this with him.
The most important piece of
advice that I could give another parent about making the decision to have their
child implanted is that they need to take their time. Be sure that this is what is right for your
child. Ask questions…lots of
questions! Do your research. Make a list of pros and cons. Be realistic.
This is not a cure for deafness, but it has potential to be life
changing for your child. Be confident in
the decision that you make. Don’t let
others make you feel guilty for the decision.
And most importantly, have hope!
I look forward to sharing the results with you tomorrow. Stay tuned!
This post is part of the collection
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I so feel you! My husband and I went back and forth on the topic, too, did a lot of research on the surgery, implant and realistic expectations for its use in communication and/or environment for our son. We felt confident that we left no stone unturned, just like what you and your husband did for Thomas. That's a cute picture by the way!
HeatherWithrow - 11/19/2015
1 likes0 replies
I appreciate every word you posted here. Great share and such a reminder to the questions and issues surrounding such a decision!! Will stay tuned!!
Karen Natoci - 11/10/2015
1 likes0 replies
What a moment in time to capture, Shelley. A moment on a long journey with your son and family. Wishing you and he the very best outcomes, knowing that your love is the most precious gift he could ever have.
Amy Parker - 11/6/2015
2 likes0 replies
What a great site for families to share, network , and learn
Patti - 11/6/2015
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Each question you will see is related to a certain message that your child might be able to express using a variety of behaviors. Read the question and decide whether your child is able to express the message described using any of the listed behaviors. If the answer is YES, then you must also decide whether your child has mastered the use of each behavior or whether it is still at an emerging stage. Check either the mastered or emerging box next to any behaviors your child uses to express the message. Use the following definitions to decide whether a behavior is mastered or emerging
