It's Hard to Know....and It's a lot of pressure when you don't

Since having Ayla and learning of her illness I have become a Dr, Nurse and Nutritionist among other traits.  I got my education from the school's of "NICU education," "paying attention" and also from "asking around."  I have learned a lot from these but my knowledge is always questionable.

When you have a baby something inside of you changes and a certain intuition occurs for your child.  I can literally feel it in my bones when something's not right with Ayla.  But unfortunately with Cystic Fibrosis some things that would be "small potatoes" to others should be taken seriously and it's hard to know the difference.

Since I am a "stay at home mom" and primary caretaker of Ayla most of those kinds of decisions fall on me.  Not that I don't call my husband to get his take on things....but I have that intuition and most of the time the weight falls on me.

At times when a cold flares up or a consistent complaint occurs I get very stressed out.  I get worried that maybe I haven't handled this or that the way I should have.  What if this turns into that and I could have done something about it?  What if I counted on my so-called "intuition" and it fails me?

Ayla has had what most people would say is just the "normal" cold that kids pick up when starting school.  It went away and now it's back.  How long do you let something go before calling the Dr? We all know that prescriptions are given out quickly with CF to prevent illness taking over in the lungs....when should you wait and when should you allow them.  Antibiotics have their own set of disadvantages for our kids.

I just sometimes feel like I would love to just brush a cold or random complaint off my shoulder.  I would love to wear only the "mom" hat and not have all the pressures of wearing the others.  That is the card I was dealt.  When I get down about how CF affects me, I can just remember how much it affects Ayla.  I will always be here to put on a different hat each day depending on what she needs.  And when she's older I'm sure I'll wear new hats that will come along with new challenges.

I know that I can only do my best.....but it doesn't make it any less stressful when my best may not always be good enough....

"Choosing to SEE" A great Read.....

CLICK HERE TO HEAR ABOUT THE BOOK

Ever since Ayla's diagnosis I have been longing for a book that I could relate to.  From a source that I could trust in.  

This book is perfect for pretty much any person in any walk of life-but for me..I feel like it was written for me to read it...

For a few years now I have been struggling still to deal with the turns my life has taken, things just hadn't turned out the way I thought they should.  Why had God let these things happen to me? To my family?

This woman has had some things happen to her that I can't even fathom and somehow she remains positive.  I just finished chapters 22-28, these were the toughest to read.  I literally cried the entire time reading them.  

This book is not just about the tragic accident that happened to her family, but is also about the raw emotions and true doubts a christian can have when you don't feel protected by God.  So often people in the church paint a picture that you can't be mad at God and still be a christian.  And they even go as far as telling a person who has just been through hell on earth that "this is all part of a plan."  Even though that statement is true, and looking back now I can see that.  But in the moment you really don't care about "the plan."-when all you can feel is the PAIN!  

The author's son said something in his eulogy to his sister that really hit home with me.  He said that when your in a "mess" it's like being up close to an abstract painting by God's hand-very out of focus and you can't understand what it is....But the farther you get from the painting (or the more time that passes) the clearer the "big picture" becomes.  

That really made sense to me to describe any trauma in that way.  When I was was in the midst of 3 months of surgeries, ventilators breathing for my baby, fear of her death and sheer panic I could not see past what was in front of me.  I could not see that nearly 4 years later I would have an odd's defying, happy, healthy, energetic, smart, beautiful little girl.  I could not see how my story would affect people and how it would affect me.  

I am not even finished reading this book yet and it has affected me this much already!  I would encourage anyone who is dealing with questioning God and his plan for your life to go out and get this book.  Reading her story will remain in the fore-front of your mind long after you close the pages of her book.  

~krista

Home Sweet Home

We just woke up from a much needed night's sleep in our own beds. Ayla is running around like nothing ever happened. Larry's getting ready for work and I'm having my morning "computer fix."

I have got my fundraising hat on again...I have all these things I need to do in my mind..and April is approaching fast. Not to mention Ayla's 3rd birthday that I need to plan that month as well!

We are definitely having a multi-family rummage-sale at Image Maker's Salon on 2.20 (located in the parking lot) and all the proceeds will go to Great Strides via Ayla's Army. I am looking forward to making that really successful, I know I have a lot of stuff to get rid of.

Now about Ayla, the Dr's have started her on a daily Miralax regimen. This should help prevent any further blockages. I hate that she has to take yet another medicine daily but if it will help her, I'm all for it. The Dr's really aren't sure that she hasn't had this blockage for months, so all that time we were battling C-diff-could have been signs of this blockage. I mean you think she's pooping and it's not hard. But like her Dr said, your poop will liquefy if it needs to get around something. And that makes sense to me.

So I'm going to be "On-Guard" for new things including all the old signs I watched for now.

CF is such a crappy disease-literally!

C-Diff: volume ____? to many to count...

I emailed Ayla's Dr today because I am concerned these meds she's been on aren't getting the job done.. I am about 90% sure that she would still test positive for C-difficile if tested today. Which makes me very sad. I was thinking about it last night and realized that we have been dealing with this bug since at LEAST September!

Her doctor emailed me back and is going to call in ANOTHER stool sample to be done. But I really have no doubt she still has it. She has been having the same or more belly pain here lately and her BM's are not formed and greasy (for the most part) -sorry for all of you who don't know but we CF'ers talk a lot about poop!

So I will probably get that together (polite words for collecting the sample) tomorrow and take it down to the lab and wait yet again for these results. I think this is the 6th time now that we have done this.

My question to her doctor was "what is the next step in getting rid of this" I mean we have tried 2 different methods now, CMON!

Ayla has been such a sport and still is the happiest child you'll ever see, but I feel so bad that she has had to deal with this all these months!

Please pray that whatever step needs to be taken to get rid of this C-diff (if we test positive) is the right one and that it will work for us!

I'll post an update after labs are done.

frustrated mama,

Join Team Ayla!

I had a great conversation with a woman from the Mobile, AL office of the Cystic Fibrosis Foundation. We spoke for about fifteen minutes about Ayla and fundraising. She gave me directions to starting a fundraising team....Team Ayla!
We will be raising money year round at events that I will tell you all about as they come. We will also attend the National Fundraiser for the foundation called Great Strides in April 2010. I have sent some invites to join my team and welcome all interested parties. I would love to raise some serious money to help fund the research needed to cure Cystic Fibrosis.

If you would like to join my team or donate visit:

http://www.cff.org/Great_Strides/KristaTucker

I also spoke with her about my desire to help put together a resource for Cf parents. I shared with her about how when dealing with Ayla's diagnosis, I would have loved to have had a private place that I could go to know someone else was dealing with the same issues I was(how I could have used a "Breathing Room" then). Many Dr's tried to recommend individuals to call but that wasn't me, I wanted to deal with this on my own for a while.

She agreed that there really aren't any publications dedicated to the parents and we really need that. I would love to be a part of it, I enjoy writing and am so excited to see what's next for me in the future. I have really enjoyed doing this blog. I know that many of my friends and family are keeping up with us by using this tool and I love that.

But I really want to be involved in something that helps CF parents, I really hope that God will orchestrate this for me. I could be doing something that I enjoy and helping people who are dealing with the same things I am.

That would be a dream and I pray it's in "the plan" for my life, or something along those lines...

Anyways I am so excited about Great Strides and doing some other things as well..

I think the first thing on my list is a Boot-Drive with help from the Niceville Fire Department. I will let you know when we finalize the particulars.

Thank-You,