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On January 6, 2004 a beautiful baby girl was brought into this world. She had curly red hair and the most amazing blue eyes. Even from her first moments Janna seemed to be very aware of the world. Many commented that she seemed very wise, an old soul.
Janna spent the first few weeks of her life at the Children's Hospital in the NeoNatal Unit as we attempted to get her condition under control. It was soon confirmed that she suffered from a rare Genetic disorder called Epidermylosis Bulosa. We were optimistic that it would turn out to be a milder form of the condition, and that brighter days would be ahead.
She was released from Hospital on February 16, 2004. We were all so happy to get her home! We had a wonderful 7 weeks at home with her and adjusted to her many needs. Mom and Janna enjoyed many long afternoon naps, and play time with her big brother, who learned to be very delicate with his little sister.
We laughed because we had to carry her on a pillow to minimize damage to her, and we called her the princess in the pea. She was my little DIVA.
Unfortunately Janna's uphill battle began on April 10, 2004. I had been out shopping that morning for Easter dinner groceries. When I arrived at home, Janna did not look well. We packed her up to bring her to the Emergency, as our pediatrician was off for the weekend. During our trip there she deteriorated, and we made it to hospital just in time. Janna spent approximately 1 week in ICU and thankfully recovered from her infection well.
However, given that our homecare had fallen through, Janna spent the remainder of her life in Hospital. Janna had many up's and down's during the time in Hospital, as well as many weeks in the ICU. She would always do well until the Long weekend's. It became somewhat of a urban legend at the hospital. But sure as I am typing these words, she would always go "sour". Never failed.
Sadly after a lost battle with a severe septic shock, Our Janna Bear got her wings. She was in my arms and surrounded by her friends and Family who all had an opportunity for a last kiss and a goodbye.
Janna was loved very much at the hospital and by family and friends. She had her "girls", a regular bunch of nurses who cared for her. They were our family away from home, and honestly I do not know how we would have coped without them. In my meetings with them in Janna's last days, and since she passed, we laugh about her quirky ways, the days on the "Patio", the excitement when I would bring in a new Janna original outfit, our few but precious outings.
Janna touched the lives of so many, as was apparent at her Wake's and Funeral who were attended by so many.
Her memory will live on. We will be hosting a Golf Tournament in her memory to support EB related charities. And her memory lives on in me and those who have been forever changed by her directly or by the many e-mail updates.
I do and will miss her forever, and think of her every day. I am a better person for having had her in my life, and I know everyone else feels the same way too.
I love you my little Bear, and I will be with you again one day. But until that time, please be good to your grandparents, and have fun with all the other little angel's in heaven.
Love your Mommy, Daddy, and Big Brother Jacob
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JANNA FACTS AND HIGHLIGHTS:
-COLOUR OF HAIR:
Red and Curly
-FAVOURITE MUSIC:
Country and Baby Vivaldi - depending on her mood!
-FAVOURITE TV SHOW:
Regis and Kelly; Newly wed's
-FAVOURITE KIDS SHOW:
Baby Einstein
-HATED COLOUR:
Yellow
-FAVOURITE COLOUR:
Red
-FAVOURITE TOY:
Fisher Price Ocean Crib Toy
-MOBILE:
Whoozit
-FAVOURITE TIME OF DAY:
late night
-FAVOURITE PAST TIME:
Cuddles and Late night TV, and bouncing in her green chair
-FAVOURITE PERSON
Mom ( I hope )
-FAVOURITE OUTFIT:
Pink Dress with the hearts
-TRADE MARK:
Headband with the knot ( aunt jemima)
-MOST BEAUTIFUL FEATURE:
Her stunning eye's followed by her smile.
-FIRST TEETH:
At 4.5 months old
-SOOTHER:
Tried them all, ended up liking a premie nipple with cotton in it! Who Knew!
-BRAINWASHING TECHNIQUE:
When she wanted attention she would cough like she was refulxing, as soon as you would come to the crib she would settle and smile.
-NICKNAMES:
Little Stinker, Janna Bear, Little DIVA, princess, Angel Girl
-SONGS THAT MAKE ME THINK OF JANNA:
You Raise Me up! Closer to where you are, Little Wing, Your My inspiration.
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I would always sing to her a little made up song
it got us through many long nights in the ICU and hospital. It went like this...
Yes you are my Janna Bear
Yes you are my Janna Bear
Yes you are my Janna Bear
Mommy Loves you very much
Mommy and Daddy watching over you
Mommy and Daddy watching over you
Mommy and Daddy watching over you
My little Janna Bear
Grandma's and Grampa watching over you
Grandma's and Grampa watching over you
Grandma's and Grampa watching over you
My little Janna Bear
Uncle's and Aunties watching over you
Uncle's and Aunties watching over you
Uncle's and Aunties watching over you
My Little Janna Bear
All your friends watching over you
All your friends watching over you
All your friends watching over you
My little Janna Bear
The Angel's and the Lord watching over you
The Angel's and the Lord watching over you
The Angel's and the Lord watching over you
My Little Janna Bear.
Yes you are my Janna Bear
Yes you are my Janna Bear
Yes you are my Janna Bear
Mommy Loves you very much ...
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