JILLY

Jillian's having fun!

I know, way too long without updating "lil Jilly's" progress......She is doing phenomenal!
She is now 19 months, and she is starting to realize the value that her CI holds.
For the past three months she hasn't wanted much to do with her processor, she would fight us to put it on and fight us to keep it on. I felt as though she loves the sound of silence and doesn't want to hear any noises or sounds.
I will continue to fight for her second implant and at some point, when Jillian is able to make her own decisions and if she chooses not to wear her device and would like to remain a life in silence, I will RESPECT her decision.
I will remind her that this is a GIFT from God and that this was His plan for her.
I have only wanted her to have choices in life and never wanted her to be limited.
I wouldn't feel as though I fulfilled my Motherhood in making any other decision.
When the doctor told me that she was Deaf, my next question was "what can I do to help her", The CI, was not a decision or question between John and I, It was a demand.

There is a doctor at our Church that told me "wait about 5-6 years before you get her implanted in her left ear." Of course I knew where he was going with this conversation, but on the same hand I appreciated his concern. He stated that "you never know where technology will be in the next few years and may be able to give her something more." He's right, BUT, I'm not willing to wait. These are the most important years in her life to learn her vowels, consonants and to learn how to communicate verbally. She needs to be able to hear now. I don't doubt that there won't be something more advanced in the next few years with maybe less therapy, but what if there isn't? She will be able to develop, successfully with a CI, and she will get her second one within time. I'm not willing to take chances when it comes to my daughter's! They deserve only the best!

Jillian's Little Special!

"Our little star's" web sites has been updated!
If you missed the program from Saturday night or are out of the viewing area you can view the special on

http://www.abcactionnews.com/

-click on Health
-click on "Cochlear Implant helps a toddle hear"

This brings you to the picture of Jillian and her story posted.

To the right of the article shows a small T.V. picture screen "click on Play" and you can view her special!

Also to the left of her (written) article shows a link called:

On-Air Links:
-click on Links and Info
-click on "Cochlear Implants"

this brings you to some informative web sites, including Jillian's Blog and also the web site ( http://www.rhyanshope.org/ ) that has selected Jillian for the next candidate to been given her second Implant with the funds that will be raised!

About a week ago, my Mom picked up Isabelle to go shopping. I took advantage of Izzy being gone and interacted with just Jillian. She of course had her processor on as always and brought her into the toy room.
Isabelle was given this awesome play house for Christmas, from her Grandma (Candy) and Aunt(Maranda and Paulina) In each of the rooms of this house the appliances make noise, the phone rings, the tea pot on the stove whistles, the and the babies bedroom plays nursery rhymes.
Jillian responded to all of the noises. She picked up the phone after it rang and dances to the nursery rhymes! It brought a big smile to my face, tears came to my eyes knowing that she could hear these sounds. Whether they're the same sounds as you and I hear on a daily basis, she heard something to get her to react to what she was playing with!

Some may ask....If she can hear out of her one implant why isn't that enough?
Would it be okay for you or I to be born with ONE hearing ear?
I wear glasses and contacts, would it be okay if my Mom or Dad said you can see out of ONE eye??

Our Little Star!

Jillian's, ABC News Special will be shown on the 11 O'clock evening news, Saturday the 26th of April!

For all of you that aren't able to view the local news, you will be able to view it (the following Monday, afternoon) from their web site: http://www.abcactionnews.com/

Jillian's one month of progress!!

I know I'm way over due with updates!
I need to make this more of a priority to take time out and write about Jillian's progress and updates!
It's been a crazy month and every evening that I feel as though I have time, something else arises or I find myself exhausted and going to bed way too early! "No excuses!"

In the last month we celebrated Easter and Jillian's new experiences with sound!
I feel as though she is hearing some tones and responds to us on occasion!
She is at the age or old enough to know her rights from wrong!
She knows that every time she puts something besides food in her mouth that it's not allowed, she immediately looks for our responds! I'm not sure if she hears us or that she knows that she is not supposed to!?

The success I have witnessed, has been when I walk into the room as she is highly focused on a toy or cartoon and I say her name or start talking she looks my direction! So you can tell that she hears a different pitch from the TV or hears our voice when focusing on her toys!
It's amazing that there is even a responds, I'm so used to taping her on her shoulder to let her know I need her attention!

We still focus on explaining everything to her, what she is eating, the water running, the rain, the dog barking and why we do the things we do.
Her new found fun, is every night when I have to take her processor off to go to bed, she thinks it's really funny to take her pants and diaper off! This little game takes place five to seven times a night and no she never gets tired of it!
My challenge is trying to explain to her that this is not okay, as she laughs back at me and the minute I go back downstairs it's all off again! So I found at the Gap, (summer) pajamas that are one peice and feet-less! She has not yet figured out how to take them off! She's smart, give her another week!

Our biggest challenge with the CI is getting it on her and keeping it on!
She enjoys taking it off or shaking her head back and fourth so that it's hard for us to put on!
It's as if she enjoys the silence of peace and quiet! (but then again, which one of us don't) Again she finds this amusing, knowing that Dad and I are consistent with making sure that she wears it all waking hours!

She is very "hard headed" at her age (which isn't a bad thing) she knows what she wants!
She started her occupational therapy and the Doctor seems to think that it's not so much sensory, it's a behavior thing and will get better as she can hear more! Which is always positive thing to hear!

Before ending this update, I want to Thank each and every one of you, for viewing her Blog!
Before sending out the mass e-mail pertaining to her donations at http://www.rhyanshope.org/ she had 24 viewers! Now there have been a total of 165! The web site asks for only one dollar, but I ask that you send it out to all your family, friends and co-corkers!
Every dollar helps towards Jillian's second implant!
I Thank You and so does Jillian!!!

From one successful story to the next........

Today we met The Baker family at a park in St. Petersburg, Florida.
It was an incredible day! Our families blended so well.
Meeting Courtney, was like a reacquainting with an old high school/ college friend that I hadn't seen in years!
When I said "hello" and hugged her, tears came to my eyes. It was such an intense feeling, knowing that this person who I have talked to for months has walked down the same path that I'm approaching.
God does have our lives planned out before birth, and He reconfirmed it.
Our husbands hit it off and seem to share the same strong, high spirited personalities. It was interesting to listen to their conversation, from "guy" talk to hearing how passionate they are about their daughter's experiences and their progress.
As for the little ones......the four of them interacted and played together as if they have been best friends, that they see each other everyday!

It was amazing and yet very emotional for me to listen to Rhyan answering my questions. I asked her what grade she was in and what is her most enjoyable activity, at home or at school. She replied immediately without any hesitation or asking me to speak louder in the cutest little voice. She held a conversation like any other 6 year old.
She then was interviewed by the news cast and that is when I became teary eyed. I watched as the reporter asked Rhyan questions and she was smiling and responding like any happy little girl would.
It was tears of joy and anticipation, knowing that my Jilly will be at this point of progress at her age.

One of my husband's questions to Rhyan was "what do I sound like?" Which we have been told from others that it sounds like a duck, a robot, or like talking under water. She replied "what do you mean? You sound normal." Matt (her Father) told us a story, that one night they were watching T.V. and the theft commercial (credit card company) came on... the man is sitting there in a lazy boy chair and his voice is a females voice and she looked over at her Mom and Dad saying " that isn't right" that's not a mans voice. She was able to hear the difference from low and high tones and was able to differentiate the sounds from the voice.

I wonder if Rhyan (or Jillian when she is older) wonders why people ask her these questions? To her this is all she knows, there is nothing different.
It's funny because since Jillian has been born and people have met her for the first time, I don't introduce my daughter as " this is Jillian, and she is deaf." I introduce her as Jillian. Not that I'm embarrassed or want anyone to feel sorry for her, if anything when I do tell someone it comes across as being PROUD!
As she has become older, at times when people are talking to her and they except her to respond, I let them know that she is deaf. So that they have a little better understanding.

Meeting "The Baker family" was very inspirational! I love encountering inspired people, it only motivates you to do more and to be successful. Isn't that what life's about!!

Jillian turned 17 months today!

Two more days and counting to her first mapping appointment!

So ABC Action News has been following Jillian through her successful progress.
I will let everyone know when it is going to be televised!

On Thursday we will be meeting the Baker Family for the first time. I have been in contact with Ryhan's Mom (Courtney) since September 2007 (rhyanshope.org).
Courtney's daughter (Rhyan) received her first CI at 18 months and just recently received her second CI in May 2007.
Her bilateral implants have been extremely successful, and she now attends the first grade.
I of course can't wait to meet Courtney, but even more so can not wait to meet, and talk to Rhyan.
I don't want to overwhelm her with questions.....she 7 years old, but I can't wait to hear, and to see the success from this beautiful little girl that I have only read about and have seen her pictures.

In all honesty, I have always felt alienated when I found out at birth that my little one was deaf. I don't know anyone who is deaf, and immediately wanted to know how I can better her from her diagnose.

I have spoken to many parents with deaf children and spoken to the most beautiful people that have chosen to remain deaf, and admire everyone's story!

Sign Language is a beautiful language and will always be seen in our household.
Jillian will always be deaf and it is a beautiful gift from God.

I choose the path to try to give her the gift of hearing. I should rephrase that, I hope that this is God's plan for her.

I know that the deaf community sometimes frowns upon CI's but why not give our children every and all opportunities to try to make their lives easier!

I was told at age 7 that I needed to wear eye glasses to see the chalk board and I can't imagine my parents telling me just "deal with it".

Of course , if there is something that can better a situation......."go with it!"