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Wednesday, April 8, 2009

Cystic Fibrosis?

I started blogging because I enjoyed reading so many other fantastic blogs, and I love finding inspiration in them all. Reading them nourishes my soul. I love reading your stories, and feel like I actually know some of you :) I am writing this post to document something we as a family have been going through for a few months.

Since starting my blog I see it as an important tool. I love to scrapbook; although I am many years behind now, I have a room full of supplies which I keep adding to, in hopes of the days ahead in which I will catch up. I see this blog as a space to record important parts of life, the good, the bad, and everything in between.

I have never kept a diary since I was a teen. I never understood why grown women kept journals about daily life. I do now. I can't believe my eyes were closed for so long! What an amazing way to preserve memories. Not just the good ones, but the way you feel about bad issues or sad issues as well. (lets face it, as each year goes by, a little corner of our memory goes away with it) Perhaps some would suggest to do it in a more private way like a journal, but for me, my blog, will provide my family with the ability to remember the little things, the big things, the wonderful things and the sad things. All of which are important in our life journeys.

For those of you who physically know me, you will know that we have had a hard time with Aayla. For those of you who are popping by, or are internet friends, let me fill you in. When Aayla was 6 months old I began to think that there was something not quite right. She has always been and still is the most precious little girl. She is what I call an "old soul". She is so sweet and gentle, so content and precious...but as the days pass I know there is something not quite right. She stopped gaining weight. She goes up and down like a yoyo with her weight. She is now 1 1/2 years old and weighs about 18 pounds. She has been on a diet of pediasure since Oct of 2008 and has met basically none of her milestones on time or at all.

At 1 1/2 years old we are excited that she now is just starting to hold a cup to drink, to hold a spoon to attempt to eat, to take an awkward step, to say mamamama and dadadada, even though she doesn't associate them with us. These are things she should have been doing for months now. Yet she looks at you with her big brown eyes and smiles with such emotion. The Doctors have all said they think it's just because her body hasn't been keeping on the calories. That she is too alert for anything major to be wrong. So why doesn't she gain weight? For almost a year now, there has been minimal growth. She has hardly gained anything, and when she does gain it she looses it in the next week.

We aren't gaining any more weight, but we aren't loosing either right now. The pediatrician has ordered sweat tests which we completed today, as well as redoing blood and stool work. The sweat test, tests for cystic fibrosis. At first a heavy weight dropped onto my shoulders at the thought of my sweet little girl having such a thing.

When Aayla first got sick I was quite depressed although no one probably knew. When I was doagnosed with MS it was easy for me to put a stiff upper chin on and just deal with it. I gave myself a literal 5 minute pity party and then moved on. Life is too short to dwell on things that are out of our controll. I believe our lives are what we make of them and we need to think positive to be positive.

So this negative, depressed feelings about Aayla, I buried. No one new, knows, until now. It is not so easy to be positive about such things when they happen to our children. I did feel depressed for a few months, but after a trip to Hawaii in January; where Aayla gained a lot of weight, things were picking up.

And now this posibility....Then I remember, life is too short to dwell on such things. Aayla will be who she will be and what ever ails she has, we will love her! I hope of course that the tests rule out this possibility, as the doctor suggests, until next week when the results are in...we will wait. She needs us to be strong, so I stand up, shake off those weights, and move forward. She WILL be OK!