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Life After the Diagnosis

Hannah taking albuterol February 2001
Life After February 21, 2001
It was time for the grieving to begin; believe it or not we were grieving.  The loss of a healthy child is overwhelming at times.  All our hopes and dreams for her were gone with that phone call.  We knew very little about CF and what we did know was not good.  We thought she was going to die and we had no idea how long we had to spend with her.  I had always wanted a boy and a girl.  I had a big brother and I had always dreamed of having a boy older than my girl.  I just remember how cool that was when I was a little girl having a big brother to protect me.
Now we faced the possiblity of Tommy, the big brother watching his little sister die and there was nothing he would be able to do to protect her.
We tried to explain to Tommy (only 6 at the time) that his sister was sick and we all had to work very hard to keep her healthy.  We had our first appointment with the Pulmonologist the following week to learn all about CF and what we needed to do to keep her healthy.
We learned a lot that day.  We learned that there was no cure for cystic fibrosis and that the life expectancy was only 32 in 2001.  Hannah has the most common, most deadly gene mutation. The Delta F508 mutation, she has two copies one from each of us.  To have CF, a child must inherit the defective gene from both parents.  No one in either of our families has ever had CF.
Hannah started and ended each day by inhaling albuterol and chest therapy which consisted of us pounding 12 spots on her back, sides and chest to clear the mucus.  With every bottle, she would take an enzyme pill that we would pour in apple sauce and feed to her. Enzymes help the pancreas break down food so she can digest it and absorb the nutrients in food.  She also took vitamin drops of vitamins A, D, E, and K since her body cannot absorb these vitamins.
Hannah was hospitalized in March, 2001for IV antibiotics to clear out the infection that had started months earlier.
She received her first PICC line, while also receiving her first bronchoscopy. One of us, was with her 24-7, it was exhausting.
She came home in a few days because she was not growing pseudomonas, just staph and she was able to be treated with oral antibiotics.
We settled into our new routine (as much as we could).  I know I became extremely depressed and typical for me I put on lots of weight.  We started going to church again. (Mt Carmel Baptist in Kenwood http://www.mcbc4him.org/)
Tom was even baptized converting from a Catholic to a Baptist.  We rely on God to keep us going.  Unlike some couples our marriage grew even stronger as we faced this challenge together.
Hannah was hospitalized again in December 2001 and again put on IV antibiotics.  This time she was in the hospital for over two weeks but came home a few days before Christmas.  Here she is pushing her IV pole around.  She is so brave.  Don't you love the beautiful curls.
And this was what normal became for us.  Trips to the CF clinic every three months, wondering what each throat culture would show.  She grew something almost every trip, H-flu or staph is the norm.  She has taken hundreds of antibiotics in her life time.
Hannah would have two psuedomonas infections, six hospital stays (one for an intestinal blockage) over the next six years.
But a routine blood test in September 2007, would tear us apart all over again.
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