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!"

The Gift of Hearing.....
Which some of us take for granted! Next time you're in a public setting, at the pool, at the Beach, at the Grocery Store, or at a Restaurant. Plug your ears and look around you....that is the closest feeling you'll get to being deaf.
I have tried that at times, just to put myself in my daughters foot steps, to comprehend what it would be like, and what she has gone through.
I know that she doesn't know any different, but I can't imagine not being able to hear music to dance to, my parents teaching me, my sister's voice, and laughter. My Grandparent's telling me they Love me, the sound of birds chirping, the wind blowing through the trees, the sound of the telephone ringing, the door bell to company, and our dog (Marley) barking.
Today was Jillian's activation date. To her the most scariest day and amazing day of her life.
It started with her doctor's tuning the implant, to her it was beeping sounds. Like you and I can imagine when we get our hearing tested.
Her reaction was a little scared and crying but for the most part she was still, curious and a bit confused.
The Audiologist then said "we are going to turn the implant on so she can hear our voices." I said a quick prayer , and Thanked God but was scared of how she was going to react.
She started crying immediately, and looked puzzled. After a few minutes went by we took her out of her surroundings. We walked outside of the Hospital and introduced her to noises and sounds that she had never heard or been accustom to.
The sound of a lawn mower, a industrial truck passing, the sound of a horn honking, and walking into a bathroom and turning on the faucet to running water.
Her expressions were irreplaceable!
She was a champion through it all, not crying , just her facial expressions and head turning was enough to know that she was interested and could hear.

At times we weren't sure if it was vibrations or just observation, but of course we were optimistic and viewed it as success.

After the appointment went back home and put her down for her afternoon nap.
This was the MOST AMAZING part of the day, three hours later she woke up, and Dad went up stairs to get her. He proceeded down the steps with her head turned the opposite direction of me, and I said "GOOD MORNING JILLIAN" ...her head turned so fast towards my direction with a puzzled look on her face and John and I just smiled at each other and said " did you see that?" That to me was the most exciting, memorable moment in my 31 years besides giving both my girls their first kiss at birth!

I will never forget, nor ever have an experience like that again!

Later that night I opened one of her Christmas gifts given to her from her cousin's it was a electronic keyboard. I had kept it hidden from of course her bigger sister (Isabelle) knowing her desire to open and play with it but this was Jillian's gift for when she would be able to hear.
I unwrapped it and turned it on, I pressed a button that would continuously play a beat and Jillian started laughing and dancing to it! Again, just an amazing moment!

I can only describe this experience as if I'm a child that received a new toy for Christmas and can't wait to play with it! When I'm at work, I can't wait to get home to both my girls to interact with them. But now my youngest daughter can hear things she has never heard before. I'm introducing her to things by sound and words that she has never been able to comprehend. It's as if she is new born and I'm explaining to her what everything is for the first time, except that she is smart enough to put two and two together. Everything she eats, feels, smells and sees is now introduced to her in words. It is honestly incredible!

It is truly so important for a deaf person to be implanted as soon and young as possible because if enough years go by it's only harder for them to adjust and understand.
I'm not saying that an implant won't do justis for an adult but you have to think about a child is like a "sponge" their first three years are crucial to what they see, hear and learn.

Thank you for all of your prayers!

Days and counting.....

I took Jillian today to the Doctor's for her scheduled vaccines and Meningitis vaccine.

All together a total of five shots, needless to say she was ready to get out of there!

She weights 31 pounds and 35.5 inches.

She'll be 17 months on the 11th of this month!

Her BIG DAY is less then 5 days away!

We are ready and of course excited! I'm very curious to see how she'll respond!

I have been told that my expectations shouldn't be too high for the initial activation date, because at times it could be more of a trying event and within a few months I may see more of a successful responds. I of course am praying for the best results for her!

So of course, I will keep everyone updated with her progress!

My expectations are of course always high and I don't expect a miracle on Wednesday, but I can't wait to see her first responds from the first sound or word she does hear!

Whether it's from her Dad, sister or myself will bring a tear of joy! I pray that she isn't scared.

A DATE, WE'LL NEVER FORGET!

WOW, I have to get better at updating my Blog...alot has taken place since my last update!
As of FEBRUARY 5th 2008, Jillian received her first CI! It was 16 months of prayer and determination for her surgery to take place and her recovery to be successful!
The Surgery was just under three hours and she made a strong recovery. We were out of the Hospital the next day and off her pain meds by Thursday afternoon. There were no signs of any pain from her, just smiles, laughter and a great appetite the next day. Thank God!
Her Great-Grandparents and Aunt flew in from Toledo, Ohio to share this important day with her. She did end up back in the Hospital for a few days after her surgery but not from the CI. She woke up on Thursday morning and the right side of her head was completely swollen. The Doctor told us if the incision was inflamed to call but never warned us about her head. So I placed a phone call the surgeon and he asked us to come in, we saw one of his assistants and she stated that it was okay....if it gets worse call back! My thought was how much worse did it need to get, she looked like "Mike Tyson", with one ear bent like a car door and her head swollen. She stated if her eye becomes swollen to call back. Needless to say Friday morning she woke up looking like "Popeye" her right eye was swollen shut, so I called the doctor back and he advised us to come in to see him. We showed up at his location and the words were "wow, I have never seen this before!" Always something a Mom wants to hear! I appreciated the way he took care of the situation. He stated that we go back home , pack her a bag for a few days and go to the ER at All Children's Hospital. He gave me the orders to give to the first doctor that saw her. She was immediately given antibiotics through an IV and within just a few hours the swelling started to go down. The doctor diagnosed her with Cellucitus. Which can be extremely dangerous if not treated immediately. This was a isolated case and had nothing to do with the CI. So for any Moms (and Dads) out there that are reading this please don't think that this is a side effect from a CI.
Jillian also has been diagnosed a while back with Sensory Integration, so needless to say both of her admissions to the Hospital were not easy for her. She doesn't like people touching her. She is extremely sensitive to touch. When she sees a stranger (doctor, nurse, therapist) coming towards her she starts screaming and crying. Since she was born she has had nothing but therapist and doctors working with her to better her condition. When she was hospitalized the nurses and I made an agreement, they gave me the things to take her stats and when she was sleeping I would turn her arm gently to face the outside of the crib so that the nurses could very carefully and gently insert the antibodies to her IV. This was the only way to keep her peaceful. She is so sensitive that when I bend down to kiss her while she is asleep she wakes up immediately. So I have learned to kiss my hand and softly place it on her bottom, so with enough cushion she won't feel it.
Jillian has recovered just fine. She is on strong antibiotics and thank God we have two days left of taking them. The thing that breaks my heart is giving them to her three times a day. She gags and chocks every time, but I know how important it is make sure she has her dose and completes the course that was prescribe by the doctor so she doesn't relapse.
Jillian is still having troubles finding the interests in walking. I pray that she finds it soon, because a 27 pound baby starts to get heavy! But I remind myself that there will be a day in the future that she won't allow me to hold her through the mall and grocery store so I treasure every minute!
I took my Mom and the girls out to dinner last night, as we sat there with great conversation I expressed to her my concerns with Jillian's other challenges. Following the conversation my Mom reminded me of something that took place when I was 10, she said she'll never forget. We were at the mall in Toledo and I saw a child that to me at that age was a little different, I turned to my Mom and asked her "what was wrong with that child?" My Mom responded that he was a "Special Gift from God and that his Mom and Dad needed to give extra attention to his needs" .....and she remembered me saying as well as I do, " I hope that God would Bless me with a Child like that! " Thank you God for granting my wish!"

Jillian's BEST NEWS!!!!

December 12, 2007
I contacted the insurance company because I still had not heard back from them, patiently, eagerly a waiting asking if Jillian had been approved. I received from a voice with happiness "your daughter has been accepted and approved for one cochlear implant!" My heart started beating harder and barley able to say thank you, as tears ran down my face. I then asked for names; asking for specifics....."I had been told before, I need documentation" (when, who and I need this in writing) This date I WILL NEVER FORGET, I have been waiting over 14 months for this news, I received the letter shortly after the phone call. The following day I called her surgeon with so much enthusiasm, The nurse answered and almost screaming the words "I'm calling to schedule my daughter's Cochlear implant surgery the nurse started laughing! I thought I was never going to be able to say these words. She said I can take care of this for you, and her surgery will take place on February 5th 2008. I completed the day with e-mail to all my loved ones with this information.

December, 16th
I was so excited to go Christmas shopping, for the first year of Jillian's life I concentrated on gifts that had vibrations/feelings, touch and smell. For the first time I was able to shop accordingly to her future new senses! I bought (I think every toy) that made noise! I questioned myself thinking do I really want all this much noise in my house? But when you celebrate a new life into this world you pray that she or he will have ten toes, ten fingers and all of their senses and sometimes God Blesses you with challenges!

December 24th
Christmas eve, we visited my Mom for a wonderful dinner and later attended Christmas Mass, it was the most beautiful service that I could have ever asked for. My Dad and Mom (their grandparents) met us there. If there were no gifts under the tree from Santa, we had already been blessed with the best gift ever! Every Sunday @ 9am is family service at St. Ignacius, the children are asked to come to the alter while the priest gives a sermon to the children. The Priest's homely started off with "I'm not sure if anyone has heard of the city Toledo?" Well my oldest daughter yelled "my cousins are from there!" The priest laughed and proceeded with his words...... he told a great story about a poor parish in Toledo, Ohio and then after the children were asked to walk up and come forward for a blessing. Isabelle, Jillian and I walked up to the priest and he proceeded to give Izzy her blessing and the priest turned to Jilly as though he knew she needed a little more attention then the others, he looked at her blessed her on her forehead and said "God is With You" . Of course a great tear came from my eye, saying in my mind "Thank You God!"

Needless to say I knew my prayers would be answered! I can't wait for the future!