About Cayman's Hearing
Monday, July 26, 2010
We are home from the hospital.
Our little Cayman now has tubes in her ears. There was definite fluid they drained but it is not enough to help her hearing alone. It turns out there is a much deeper issue than just the fluid in her ears. The CT scan and ABR hearing test both revealed a hearing loss.
There's more.
Cayman's inner ear is severely malformed and typically over time the hearing loss gets worse with this kind of condition.
Cayman loves music. She responds to songs we sing and shows we watch. Our hearts feel a little sting of sadness to think that one day she might not be able to enjoy those things in the same way.
Plus it greatly effects her balance and ability in walking. It's not that she will never be able to walk but it will take her some time to get to that milestone. Then you throw in her brain malformation with that and well...she just has some pretty big challenges to conquer.
Our hearts - as her parents - feel sort of heavy knowing there is more added to the list of struggles for Cayman.
But there was a piece of gladness we gripped at as we heard the doctor explain Cayman's hearing condition - It seems it's a miracle that she hears as well as she does.
In fact, for so long she's had us all puzzled whether there was even a problem or not. She responds so well to the things we say.
She will be getting hearing aids. I am looking forward to seeing if they bring any changes for Cayman. It makes me smile imagining her learning to talk and having a conversation with me someday. What fun that would be. But if not, that's okay too. I am deeply in love with my little miracle girl, just as she is. Cayman has us completely warmed with such joy.
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Kristen - I am so sorry to hear that they found hearing loss. It is hard to grasp when your child responds so well to sounds. Whatever it's worth, we have seen a gradual improvement with Audrey since she was aided. She is more vocal and has caught on to sign language so well.
Good luck with finding the right hearing aid (and insurance funding)!!!
Also, if you need a good resource for sign language... http://www.seecenter.org/ They tour the country and put on week long workshops that help interpreters/teachers/parents.
I am so very sorry to hear about her hearing loss. I pray that Cayman is able to enjoy everyday things always!
Good luck with the hearing aids.
Hmmm, you say Cayman has 'challenges to conquer'...that little girl has been a miracle from day #1....I think from watching and reading of her remarkable progress, that she will take the hearing challenge....and conquer it, or deal with it...with no problem. She seems to leap right over milestones that seemed to be out of her reach....a special girl...with very special parents
Kristen,
I can hear the sadness in your words. My heart is hurting and I wish I could be there right now, because I'd be giving you a great big hug right now.
There is something that kept playing back in my head as I was reading this, and I know I'm not going to say it how you said it to me; but I'm going to do my best and hope that you remember exactly how you said it. These words (or at least the meaning of them) have not left my heart since you uttered them:
Back, a couple months ago, when you were first pregnant (like the day you found out) we were talking in the wee hours and I said something about talking with the doctors about your current pregnancy and what were the chances of having another child with the same challenges as Cayman. You said something to the fact of this: That those numbers didn't matter as much to you because they didn't include the "God factor". The fact that no matter what the doctors see and tell you, they have no idea what God can and will do in your life.
I think this applies here too. Cayman is not in person what paper and tests tell you.
Think about Cayman for a second. She is a miracle, more than most I believe. From a medical standpoint, look at what she has overcome. I remember thinking (and I hope this doesn't offend you) when she was born, what a rough thing to deal with ALL of her anomalies, more than just hydrocephalus. But she has overcome, AMAZINGLY, I believe. She had a stomach malformation, yet she eats. She had a brain malformation, yet she is super smart. She has an eye malformation, yet she sees. She had issues with her heart artery, yet that little heart still beats in her chest. She has a bone malformation, yet she uses her hands perfectly. So now she has a ear malformation: but she HEARS!! I think she is an absolute medical miracle; as a medical professional, you CANNOT explain Cayman. I am saying these words in awe of the beautiful girl that I absolutely LOVE. And I am in awe of you Kristen: you are a beautiful person with more faith in our God than I have ever seen. I hope to someday have a portion of your faith. It seems like no matter what challenge or difficulty has come your way, you take it in stride and with a strong faith. And I am stepping out in faith and saying that those doctors just maybe having figured their equations with the "God factor".
I love you and I know you will do what is perfect and right for Cayman...you and Mike are doing a beautiful job raising her!
For the "bad" news, there is always her amazing record of doing things doctors said she'd never be able to do to any degree, let alone the degree of functionality she has done it with. Also, there are many children that have lost their hearing with other "issues" added to the situation & they, too, go on to surprise doctors :) Science can't explain the miracles of God :D xoxoxoxox! we love you guys! Be encouraged.
Wow! Cayman is a very special little girl, and she's going to do great things in her life.
On another note, I stopped for a donut this morning and saw a motor home called a Cayman. I thought of you.
Praying for you today!
(The internet god was messing with me yesterday, and I couldn't comment here.)
Thankful that the procedure went well and that you have more information with which to give Cayman assistance now to enjoy music and find her own voice.
As for the prognosis...it pales in her miraculous face. Barbara
I, too can hear the sadness in your words. I am so sorry to hear about this. But, Cayman is truly incredible. She is beating ALL the odds and will continue to amaze everyone, I have no doubt. At least you know now and will be able to make decisions about her hearing based on this. I can not wait to see how she reacts to hearing aids! Did they give you any sort of time line?
I will be praying for the best for Cayman.
You sound disappointed, but at peace, which is quite remarkable given that you haven't had long to adjust to this new information. What would we do with out Jesus to hold our hand through these things?
I've learned that it doesn't matter so much what we can and can't do in life, what matters is what's in our heart. And Cayman, her heart is full of joy and full of love. She is a miracle, no matter what obsticles she must face :)
Cayman is so PERFECT and WONDERFUL and a JOY (even in hair pulling and elastic snapping :o) ). Yes it is the struggles that she has to face and overcome that makes our hearts ache for her BUT you don't see her ever give up. She just does things her own way and in her own time. She has no clue that she's not suppose to be able to accomplish some of these milestones so she just does it anyway. I credit this to you Kris and to Mike. You ones have never "tagged" her. You ones have had faith and believed in her. She has felt that and has believed in herself. What a gift you ones have given her - self-confidence!!! (and stubborness - but we won't go there) And I agree with everyone else - God is not finished with our beautiful Cayman!!! I thank God for her and for her life and for all He has taught me through her. God is Good! Love you ones!!!
I have worn hearing aids since I was in the 6th grade. Starting out I wore Miracle Ear. I share this because I am sure that financially everything is taxing. Miracle Ear has a Children's Foundation that covers 100% of the costs involved in hearing aids (hearing aid itself, ear mold, up-keep, repair, etc.). I can get you more information if you would like it. Just let me know.
Here is the website for requesting the information packet for the Children's Foundation. I hope this helps. I know of several other resources as well if this is not an option. Again, just let me know.
Here it is:
http://www.miracle-ear.com/childrenrequest.aspx
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