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!

Jillian's promise

I have submitted Jillian's request for Cochlear implants three times and she has been approved and then denied three times.
The doctor's and I have recently appealed her case. At this point, I no longer applied my case with feelings but with facts.
I contacted all the other successful Moms with children that have been implanted asking for their advise and their letters so that I can coordinate success and feelings all in one letter to accomplish my goal.
Below is my appeal letter that was sent to my insurance company......

November 7, 2007

Appeal of denial for benefits for the Nucleus Freedom Cochlear Implant

Dear Appeal Reviewer:

I am writing to appeal the recent denial of benefits for my child, Jillian R.

The cochlear implant is a prosthetic device designed to restore an individual’s ability to regain auditory stimulation by replacing the permanently inoperative function of the internal organ known as the cochlea. Since the hair cells, which stimulate the auditory nerve, in the inner ear do not function (functional defect), the cochlear implant assumes the functions of these damaged hair cells (permanently inoperative or malfunctioning body member) in the inner ear. The cochlear implant then stimulates the auditory nerve fibers with electrical impulses, thus restoring auditory stimulation to the auditory nerve.

Cochlear implants not only enable deaf/deafened individuals to hear verbal and environmental sounds, but also allows these individuals to take advantage of increased educational and employment opportunities. They can converse with others comfortably, talk on the telephone, and become active in our hearing society. As a result of implantation, Jillian will be able to hear verbal and environmental sounds that both orient her as well as alert her to potential dangers. For both children and adults, cochlear implants are a vehicle to increase the productive abilities of the profoundly hearing impaired. Without a cochlear implant, Jillian is at risk for several potential accidents since she is unable to hear verbal warnings, alarms or other environmental noises warning of danger.

Critical learning periods exist in early childhood that affect the ability of children to develop normal speech and language. Because of the potentially deleterious impact of hearing loss on a child’s speech and language development, it is logical that early diagnosis, treatment and intervention is critical for optimal outcomes. When hearing aids do not provide detection of conversational speech, it is not possible to develop the speech perception skills that assist with speech and language development. In these cases, cochlear implants have provided the auditory input that facilitate acquisition of speech and spoken language.

In light of the medical necessity and demonstrated outcomes, I would appreciate a reconsideration of Jillian’s denial of benefits for the cochlear implant procedure and related services. Humana’s denial withholds from Jillian the only opportunity to ameliorate her disability and receive the invaluable benefits of hearing. I strongly petition you to reconsider and reverse Humana’s decision to deny cochlear implants and their related services.

Please contact me if you require any further information. I look forward to your prompt reply to this formal appeal.

Jillian's Big Day...

Jillian's turning one in a few days.....
I have been out shopping for gifts specific to her needs. I found so many toys that light up, books with smells and different touch of textures to feel. I loved the challenge to find gifts appropriate to her needs.
I found myself walking throughout the aisles with a smile on my face knowing that these presents this year will help her gain the strength in others areas and knowing that next years purchases will be geared towards noise and speech.
Throughout all of the denials, I know that our prayers will be answered!

Jillian's Hope....

In the month of October there was an article in the St. Petersburg Times, regarding a little girl named Rhyan who had just been bi-laterally implanted. As I read the article tears came to my eyes, to think of the joy that family and child were going through!
The excitement that she could hear; the birds chirping, the sounds of laughter, the soon to be heard Christmas carols, being able to hear her sister talking and being able to verbally communicate with her family! The opportunities await her!
My husband contacted the editor from the column asking for any guidance and resources that he may have learned while interviewing and writing the article.
Around the middle of October I was sent an e-mail from Shelly (one of Jillian's audiologist) introducing me to Courtney, Rhyan's Mom. She explained that Courtney and her husband were creating this fundraiser for Cochlear Implants and the deaf community and are in need of a candidate. I was so truly blessed imagining that one day, Jillian would feel the same happiness and sound that Rhyan was given.