Thursday, July 19, 2012

A Little Piece of Aven

Dear Aven-
           I have found myself as of late wanting to sit down and write to you through the blog; however, the moment I start to sit, I think to myself that it would be time better spent holding you and watching you smile.  So I go to you and I grab you and look into your blue eyes. You  look so innocent and sweet.  You just came off from having a cold and you did quite well.  I had called the doctor to ask about what we needed to do. I knew from here on out your colds would be anything but common.  We would have to handle them a little bit different than the ones that your sisters have. Your CMH physicians (Children's Mercy Hospital) had told us that if you developed a cough then that is when we needed to get you to Kansas City and your pediatrician stated that we should not give you any cold meds because the medicine has a tendency to thicken up mucous even more so for CF patients. So we just held you, used the Vick's rub like crazy and suctioned your little nose constantly to see you through.  It was hard for me to watch you sleep at night.  You would lay there with a smile on your face while your little chest looked as if it were racing to provide you with every little breath it could.  Your father and I even noticed a discoloration in your skin as you slept through your cold and the slight blueness in your cheeks worried us about the lack of oxygen you were receiving.
          Several people were glad to hear that your cold had passed.  I have been very thankful for all the thoughts and prayers that are being giving to you, but what so many do not understand is that just because the sniffles are gone, the damage has been done.  Every cold is a catalyst and it disturbs me that I can not see the damage other than through an X-ray machine.  Even if I could see it with the naked eye, there would be nothing I could do.
         Your sisters, Arya and Tara, love you so much.  I get tickled at Tara who will turn 4 in October, because she truly believes in her mind that when you cry, you are crying out for her and that she is the only one that can take care of you.  Both your sisters had their genetic tests and we did receive the results on July 10, 2012.  Arya and Tara are both carriers of CF.  They DO NOT have CF so they will never experience the symptoms and treatments that you will have to endure.  Their genetic profile shows that they each have one mutation of deltaF508, which means they are a carriers.  Two mutations, such in your case, would have indicated that they had cystic fibrosis.  This is very important information for your sisters because as they get older and if they find out that their spouses also are carriers of CF, then there will be a chance of them having children with the diagnosis.  Their chances were as follows:  25 %  of not being a carrier and having no mutations,  25% of having CF, and 50% of being carriers.  1 in 25 Caucasians are carriers of CF and many do not even know it.  Your father and I did not know that each one of us carried the mutation that would lead you down this path.
                                                                    Much Love Today, Tomorrow and Always,
Sleeping during your first cold!  We had a rough night prior!
                              Mommy Autumn
Big Sister Tara taking care of you!

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