Wednesday, October 3, 2012

Dear Aven,
       It has been awhile since I have made a public post.  I have since then written you and your sisters a few letters and have made videos documenting our journey. (One of the videos I have been working on can be viewed here )
        So much has happened over the last month that I know I will forget to touch base on many things, so I will just focus on a few.  Probably the most important thing is that you are happy, doing extremely well, and are surrounded by so many people that care and love you. I wish I could blog about how you no longer need to take your enzymes nor that you have to do your treatments, but you know by now, that these are the things we have to do to keep you thriving.
         It has been very difficult to teach full time and to give you and your sisters as much attention as I would like and you need. I am very positive about the things to come and try to only give out information that I feel will bring awareness about cystic fibrosis.  I think your father and I are managing, but I will not lie, it is tough. I find myself crying every day on the drive home.   I do feel that you have the best possible set of parents to help you through this and I know that we will be there every step of the way.
          I finally did something the other night.....on September 28, 2012, I held your little hand and I looked into your innocent blue eyes and I told you that you have cystic fibrosis. It dawned on me that yes, you have been going to the doctors appointments and you have been the one that has been 'poked and proded', but everyone has just been talking around you.  I wanted to be the one to tell you. I explained to you in great detail all that I knew about the disease; the science behind the mutations, the discoveries that have been made over the past two decades, the treatments and medicines that you will have to endure on a daily basis, and even about a cousin that passed away due to CF.  I told you then and I will continue to remind you, that I will never know what it is that you are going through, but I do know that CF will never define who you are, it will only be a little piece of who you are; hence the name of this blog:  A Little Piece of Aven.
       I have had several people tell me that they love the name of the blog and liked how I played on the saying "A little piece of heaven."  When I created the title, that saying did cross my mind, but I knew from day one, that the real reason that I would entitle it this is just like I mentioned before,  CF will just be a little piece of who you are.
        Over the next couple of weeks we will be increasing your enzyme dosage, the amount of salt you take in on a daily basis and the length of time with your percussive therapy.  You had a good check-up on September 21, which resulted in no new bacteria growth, which means no anti-biotics.  We will head back to see your CF team on November 1.   You will also be in calendar to promote CF awareness and to raise funds for the Cystic Fibrosis Foundation. Hope to post pictures real soon.
          I will try to post a little more next time, until then......

                                                                      Much Love, Today, Tomorrow, and Always,
                                                                                       Your Mother Autumn


This is a picture that I took of you a couple of weeks ago.  I just love this!
This is Aven! This is who you are!