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,

Crying Over Spilt Milk...

I find myself becoming so frustrated at meal times with Ayla. The importance of weight gain and high caloric intake has been drilled into me from the beginning. Its the same with any child, they go through peaks and valleys when it comes to their appetite. Lately I have really been trying to push her to drink more milk. When I last spoke to the dietitian she recommended 3-4 8oz glasses of milk a day. That's A LOT! So at times when I think I "know" when Ayla should be hungry and she wont eat I get so frustrated with her. I felt so bad this morning because I scolded her for not finishing her milk after I told her she HAD to.
I know that I should act like I don't care and she would probably do it on her own. It's just so important to me that she get the right amount of fat and calories. I take it as a personal achievement if she gains weight at Dr. visits.

This is the life of a CF-Mom, always trying to push food down a satisfied child's mouth & wanting to cry when they wont ablidge, adding heavy whipping cream to mostly everything, and giving daily treatments and meds...Ohh I almost forgot...analyzing each #2 that's done every day to see if said child is absorbing said fat and calories.

I do the best I can, and learn from the mistakes I made today and try to have a better tomorrow.

Love,
The Food Nazi

Clinical trials...all smiles!

I felt the urge 2 days ago to contact a woman that reached out to Larry and I after getting Ayla's diagnosis of Cystic Fibrosis. She works with the Cystic Fibrosis Foundation and I hadn't really been able to receive all the information I was given at that time in my life. It was all still setting in that this was really happening to us.

So 2 years later I felt compelled to give her this blog address and ask her how things are going with the foundation and fundraising.

THIS IS A PORTION OF WHAT SHE SAYS IN HER EMAIL: "I can tell you that advancements have occurred in the past 2 years. We are currently testing several drugs that indicate it may be possible to correct the CF defect in the gene. We believe these have the potential to stop the cascading effects of cystic fibrosis, which will, in turn, add decades of life to those with CF.. Dr. Beall (at CFF headquarters) likens it to what asthma looks like today. If we can control CF in a similar fashion, people born with CF will have normal life spans and will die with CF, but they will not die from it.
The drugs mentioned above are in pill form (yea!), and could be available to CF patients in 4-5 years. It is an exciting time for those of us who have been working toward this for years (I am finishing my 12th!) The more people we have helping fund this research, the sooner it can get thru the trials and on to FDA approvals."

Seeing these words coming from a person I trust, was amazing. I began to imagine life for a second without all the fears and stigmas of "chronic condition" & "life spans."

The next thing I did was forward that email to my family to share this great news.

And then the last sentence of those words kept playing in my mind: The more people we have funding this research, the SOONER it can get thru the trials and on to FDA approvals.....

I really feel like there is something I can do to help get this new medicine in our hands. I can fund raise! I can build a team....why not call it.....team Ayla (thanks mom)..and i can do things year round to raise money for the foundation.

I am going to work on getting the needed information from the foundation this coming week. I am getting really excited about what I can do to cure CF. And I hope you are to. Watch for upcoming posts regarding fund-raising!

H1Nwhat?

There has been a lot of controversy over the vaccination for swine flu. I am a member of a few different chat rooms for Cystic Fibrosis parents and there is a lot of back and forth going on about this topic. Some parents are adamant others (like me) are not sure what to do. I have always given Ayla her seasonal flu shot and gotten in myself but this one I'm just not sure about. I know that this illness mainly targets pregnant women & children (especially with respiratory illness) and that is a good reason for Ayla to have it. I have done some research on it and found:

• That most of the Dr's offices are giving the nasal spray (which is a live form) and can get you sick. The only form I would give to Ayla is the injection (which is dead)


• This vaccine has been rushed to market because of the pandemic in our country and has not had enough trials.

Recommendations from The Cystic Fibrosis Foundation tell me to vaccinate Ayla for H1N1 and all household members. I have been waiting to hear from her Pulmonologist or Pediatrician regarding this matter and have had no recommendations thus far.
I have always wanted to listen to the doctors and my intuition and make the best decision I can for Ayla. I am meeting with the Doctor on Friday to discuss this. Ayla has been so healthy the last few years that we as family sometimes feel that we can be more "brave" when it comes to her care. I am guilty of this as well, thinking: "Well what if she was fine without it?"

But in the end I will listen to the doctors because over the last 2 years God has really orchestrated which physician groups I take Ayla to see and who I don't. I pray that I can get solid information and recommendations regarding the H1N1 vaccine and make the best choice for Ayla.

I will keep you all posted after this decision is made....TO BE CONTINUED!

Watch this Rap Video about H1N1: http://www.youtube.com/watch?v=_gwUdmPl0bU