Saturday, June 30, 2012

Dear Aven-
         We just returned from the 66 Drive-In.  I was a little reluctant to go because this week we have been faced with extremely hot temps.  It actually got up to 105 degrees today and I was worried that you would not handle the temperatures well, even in the evening;  however, we went ahead and took the car so we could keep the AC on so you would not get too over-heated.  It was important for us to take your older sisters.  I have felt that the last two months have been centered around you, as is the case with all newborns, and we wanted to get out and do something that your sisters would enjoy.  They were showing Madagascar 3 and Pirates: Band of Misfits.
         As I type this, eventhough it is late, I am looking at your father who is feeding you.  I had mentioned that I had to cut the last post short because I had to go prepare your enzymes.  Well, let me try to catch you up as to why we are giving you enzymes.
          The first five days out from your genetic test, which was taken on May 9, 2012, was a little stressful. We had gone to Children's Mercy due to your newborn screening and eventhough two screens came back positive for CF, there was still a part of me which believed that they were simply false positives. What made it stressful was when we went to the clinic we met so many people....nurse practioners, doctors, social workers, dieticians, and nurses.  They kept referring to themselves as "Aven's team" and explained how they would be there for our family as we started the CF journey.  Your father and I had lots of questions which they did a great job answering; however, as I sat there conversing with the physcians, there was a little voice inside my head that kept saying "why do they keep treating us like our daughter has cystic fibrosis when all we have done is newborn screening which is known for having more false positives than not?"  I remember crying once in front of the doctor.  They were presenting CF as a life-threatening disease and so when I asked about life expectancy, they were very positive when stating that they are always making strides in the CF community.  Years ago a child with CF was not expected to make it past their teen years and now the average life expectancy was 37.  That's when I cried.  Your father put his arm around me. You see I was currently 37, and I could not imagine you not making it to this same time in your life. Great things happened to me at the age of 37....I had you.
              Maybe I was in denial or maybe it was just hope, but after that visit I was able to walk with both feet on the ground and just kept thinking about all the false positive tests I had read about. It wasn't until May 18, 2012 that I really felt like my world had fallen apart.
            When I think back about the phone call, I really wish I had not cried in front of your sisters.  Dr. Baer from Children's Mercy had called and stated the the results from the genetic tests were in and that "your genes had cystic fibrosis written all over them."  I remember trying to hold back tears, but she could tell that I was choking up. My first and only question was "What do we do now?" She went on to explain that there were so many mutations out there, but yours was the most common.  You had two depletions of Delta F508 ( which will be referred to as either homozygous DF508 or DDF508). We went ahead and scheduled your next appointment for May 22 and at that time we would sit down with your team and begin our plans for your treatments. 
            As soon as I hung up the phone I cried out in pain.  I remember it feeling like when I had cried over the death of a loved one.  An overwheling sense of loss.  I just held you in my arms and kept repeating "No, No, No."  These were the tears that I wish I hadn't shed in front of your sisters.  Your daddy was not home and Arya and Tara came running into the room to see if I was hurt.  Once I composed myself, I called your daddy to tell him the 'official' life altering news.

                                                                                       Much love today, tomorrow, and always,
                                                                                                   Your Mother - Autumn

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