Update on the Kiddo and recommitment

 Not sure where I left off on the last thread about the state of things so a brief recap.

Last week Chloe (my 11 month old daughter) had a sedated ABP.  This is a test where while sedated they send tones of various frequencies and volumes into the ear and measure the Brains response.  Well I had gone into this test convinced that I was prepared for the worst possible news, I could not have been more wrong.  The results are that Chloe has 100% hearing loss in her left ear and minimal residual hearing in her right ear of low non audible tones, for all purposes she is completely deaf and can't hear anything around her.  As I said this was a kick in the stomach as we all want the absolute best for our children and this includes a trouble free life.  Even before last weeks test we knew and had some confirmation on major hearing loss we just were not sure how extensive the loss was.  The initial news of loss really zapped me of my energy and got me totally off track, with my focus being on research about what the possible alternatives are and support systems.

We are now on part 2 of what will prove to be a life long and crazy journey.  Our options at this point are 1) To raise her as a deaf child without aids (you would be suprised at what a hot point this is).  2) Take what modern technology has to offer and raise her as a deaf child that can hear.
3) Take what modern technology has to offer and raise her as a hearing child.

At this point I believe we are moving towards option 2. Based on her test results so far she is a candidate for implants in her left ear and possibly in her right.  Cochlear Implants will give her hearing of a broad range more so than Hearing aids would, which are not an option for her left ear.  I distinguish options 2 and 3 based on the method you choose to communicate with.  Some people choose to pursue only teaching verbal language as many of us are taught, while others purse a mixed language with verbal and sign language.

I feel the mixed language is the better solution.  Being deaf is part of who she is and nothing will ever change that.  She will potentially need to function in both societies if she chooses later in life and I want her to have the skills to do what she chooses as an adult.  Spoken language will be her primary language at school and in social situations, mixed language will be at home and then she will have the Sign Language skills when and if she needs them.  Another reason for this is that we all know how kids and teenagers can be when they decide it is time to assert their identity and need to control elements of their life.  I have read from parents and proffesionals where Aids become an easy point of control for them.  If this happens then we will still need the ability to talk with her and I that is something I always want the ability to do.

So what is the recommitment aspect?  As stupid as it sounds I have recommitted to my training, lets face it Half Ironman (70.3 miles) takes some commitment and is not easily obtained.  Even before this news I had already spoken with my wife about pushing to a Full Ironman next year (140.6 miles).  What better motivation do I need to keep pushing for what may seem to be the impossible than to show my daughter and sons that with work you can accomplish anything.  My sons knew the fat out of shape me but my daughter won't what she will have is the father my sons now have. The person that takes on the seemingly impossible and works hard to overcome the impossibility.  My daughter has given me 1 more reason to keep pushing my limits and prove to myself and those around me that WE control what is impossible in our lives and those around us can't prevent us from overcoming the impossibilities.

(HUGS) Paul. 
Hala

Bravo! You're can do attitude is such an inspiration. And it looks like you've done your research and have come up with the best possible solution for your daughter, giving her and you the best of all available options. I had no idea technology has gone so far as to enable someone who can't hear to be able to hear. That is so amazing. I know it's been a very distressing time for you, but now that you have a path forward, perhaps you can breath a little easier.

All the best.
Jan

I was introduced to the deaf community in college and yes, cochlear implants are of hot debate.

Best wishes.

Where did the last year go?  It seems like just yesterday you told us about your sweet little girl's arrival!

You are an amazing man and father.  Thanks for sharing Chloe's story with us.  Hugs.

Paul, you make me believe in dads. Seriously.

It sounds as if you and your wife have thought about this a lot and talked it over. I agree with all your points. You are giving Chloe options for the future. I think that's a tremendous gift.

As someone who has SOME hearing loss (not total but just a small percentage in each ear) I can scarcely imagine the road ahead. There's a certain social...I dunno...embarassment, maybe? to being hard of hearing at all. I hate when I have to ask people for the 4th or 5th time to repeat what they said and I know it frustrates people. I have a hard time hearing people's voices if they speak too softly or if they don't annunciate and with movies I have an especially hard time making out the words. I can hear the sound, just can't distinguish a lot of the words. I nearly always use closed captioning or else I miss something.

I've been given the option to do a hearing aid, although my doctor says it is not yet at the point where I HAVE to get one (I've become quite adept at figuring things out academically and "passive for normal"...most of the time), he says eventually I won't have the option.

So hugs to Chloe. Hugs to you. I look forward to seeing your battered but triumphant self in October wherein you will kill me on our run

my niece got hearing aids in the 9th grade and they have a place for her to plug her ipod in, very cool. It changed her life. She no longer had to sit in the front row in school to figure out what was being said and I honestly cannot tell she has them in.

She got hers at Mayo so I don't know if they are different than the type most of the elderly folks I know wear. But she loves them.

So expensive though, too bad you can't test drive a pair.

Big hugs and prayers coming your way. I know how it feels to get devastating news like that about a child. My youngest son Sam was diagnosed with epilepsy at age 3. I would have done any thing to have taken his illness myself and felt so helpless. We have always raised Sam to know that he could do anything he set his mind to do. When he needed extra help in school because of memory issues from his disease and medication, we found the perfect tutors to help him. Sam has grown up an example to many because he does not let his disease keep him down. He finished his first year of college last year with a B average and a major in Biology and Environmental Science. He has had many opportunities to teach others about epilepsy and is a very compassionate young man who goes out of his way to help others. It has been hard as a parent especially to send him off to college but his perseverance even though he had two seizures last year is an  example to me about overcoming obstacles. Your daughter will do great and you will be so proud. It has truly shown me that God does not give us more than we can stand. Praying for you and your family!     

hi!

I am deaf.

Please accept your child as a deaf person.

Please don't try to fix by cochlear implants. 

We deaf people can do anything except hear. 

I am 45 yrs old, living out on my own and ALONE, i drive (for the last 30 years), have a great job.

There are good education for deaf out there!

Learn sign language immediately so you can communicate with her efficiently! :) 

I quit wearing hearing aids at age 13, couldn't stand the sounds, and I couldnt identify the sounds anyway. 

I can read lips some, hard with strangers at first but it gets easier with people that I see on a regular basis.

Caution:  Deaf people can say swear words very good! LOL Because we have lots of practice! LOL

I also recommend you watch this old movie on netflix "And your name is Jonah".  I finally watched it recently on netflix with SUBTITLES.  It was not captioned back in 1979 when that movie came out on TV, captioning wasn't introduced until 1980.

Also turn on captioning on your tv.. it can greatly improve your daughter's reading and vocabularly!! It certainly did mine when My parents bought me in 1980.

I also tried to learn to lip read in 1970s when sign language was prohibited in Oklahoma so my parents called schools in WA and they did have sign language so they uprooted us and moved to WA and I finally learned how to communicate and picked up sign language pretty quickly! 

Good luck, and any questions, please feel free to PM me!