I am Thankful for...

Thanksgiving is such a fun time of year! Getting together with family, friends and OF COURSE the food!

This year I feel I have a lot to be thankful for. A lot has happened in 2009, mostly good things some not-so-good. This year I am really thankful to have my family around me and friends who support me.

At church last Sunday we had a sermon on being thankful. The Pastor listed a few traits that thankful people show..and I could definitely improve my "thankfulness."
So I thought a good start would be make a list:

I am thankful for.....
Being a: wife, mom, sister, daughter, friend, aunt
Having: food, fun, clothes, money, talents, home, car, BOOTCAMP, health-care for my child, good health in my family
and last but never least: Having a God who is responsible for all of it...

Happy Thanksgiving Everyone!

C-Difficult

For the last week or so we have been flying-high around the Tucker home. After getting the negative result for C-diff we thought we had seen the last of it.

For the last 3-4 days I have been seeing symptoms of that retched-bug, I have been keeping it to myself and praying a little harder that night. Yesterday I heard one too many cries of belly pain to be able to ignore it.

This morning I was awaken by Ayla needing to use the bathroom at 6 am. I got a sinking feeling in my stomach when she was done. As this morning continued she had 3-4 Bm's fairly close together and grease was present. Her belly was really bothering her until the episode was over and she had gone all she could go.

I needed to come to terms with the fact that this was back. So I "collected" a sample because I knew I'd need one to confirm my suspicions. I contacted her Doctor and drove to the lab to drop it off.

Less than 2 hours later I got a call confirming what I already knew. They have a more aggressive plan for treating this. She will begin a 6 week course of antibiotics that gradually tapers down on the dosage amounts.

I am feeling very drained and stressed from this always looming over us. With all that I worry about with Cystic Fibrosis, Billiary Attresia and now C-diff my head actually hurts today.

Please keep Ayla and her mother in your prayers we need it!

*On a more positive note: Thank you Jesus for a normal sputum culture (her CF center does routine sputum cultures every 3 months)!
Love,

FUN-raising!!

This week I have been so excited about all of the endless possibilities that are out there to raise money for the Cystic Fibrosis Foundation.

I have had overwhelming support and ideas from my friends and family. People are so kind to want to help out with this.

Some of the things that I am going to be co-ordinating are:

• Golf Tournament



• Boot Drive



• Benefit Concert



• Raffle for a "kitchen face-lift"



• Car Washes



• Rummage Sales

That's just what I've thought of so far...If any of you "followers" have any ideas or suggestions for me that would be greatly appreciated. I am going to be contacting local businesses to get involved next week. If you know of a company that would like to get involved please contact me with that information.

We already have over $2,500 pledged to raise so far! Thank you so much "Team-Ayla"

Thank-You,

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,

The Results are In.......

We have gotten the results and the test was.....NEGATIVE!!! I had been waiting for the phone call all day long. And the nurse called around 4:30 this afternoon.

Thanks to everyone for all the prayers and support. We are so blessed to know that we are past the worst part of this and we can be sure that Ayla is healing from this pesky-bug!

Thank-You Jesus for answering our prayers, and delivering Ayla from yet another battle.

Relieved-Mama,

It's A Dirty Job But Mommy's Gotta Do It!

Most of you know about Ayla's little bug we've been dealing with for about a month now. Of course we've really been dealing with it longer than that and didn't know it. But a month is about how long we have been treating it with meds.

I have been handling a lot of poop these days. I have to take a "specimen" into the lab every time they test her for C-difficile. This is about the 4th or 5th time I have done it now, so I am getting surprisingly good at it.

Tomorrow is the day that they want her stool tested to see if this bug is gone.

I am joking about the humorous parts of this saga, but that doesn't take away from the seriousness of it.

Please join with us in prayer and believe that her test will be NEGATIVE tomorrow. I am gathering the "specimen" next time she goes and plan to have it at the lab in the morning, so I can get results same day. I will be sure and blog about it then.

Thanks in advance for all the prayers.

Love,

Nanny Food....

Every time my Nanny comes over to my mom's, she comes bearing gifts. Whether it's hampers of fresh peas to shell or other yummy veggies- it's always something to look forward to. My sister Allison is in town with her boys and so it went without saying that Nanny would come over and we would well...EAT! All of the grandkids & great-grandkids know her food by name! Its not just peas....it's Nanny's Peas...Not just dressing.....it's Nanny's Dressing....Basically she could cook a stick and it would taste amazing (I have to say my mom inherited this gift as well)!
Ayla especially loves corn on the cob, it doesn't really matter where it comes from. Every time Nanny comes she brings corn to cook for her and I have to stop her from eating after about 3 ears of corn.
Nanny is coming today, since my sister is leaving tomorrow and we will have a feast. I will be sure to let none go to waste! :)
Love,

Fingers Crossed...

One of the first posts I did was called: "C-difficult" and I explained about a bug that Ayla had been dealing with for about 6 weeks at the time. Since that post she has been on meds twice to get rid of it after testing positive for the bug again. On Saturday she finished the 2nd set of antibiotics and Larry and I are really seeing some good signs:

• She is averaging 2 BM's (poops) a day-before it was 4-10 /day


• Her Stools are hardly ever greasy anymore, this mornings was for the first time in 5 days


• She is complaining much less of belly pain (caused from trapped gas)
  
• She is having a lot more Gas, which is a good thing because things are moving through

So on Monday we will be going to the lab to do another stool study to see if this bug is gone after being off meds for a week. We are really praying that she will have beat this for good. I know that she is defying odds in so many other situations, so this one shouldn't be any different.
That's what we are expecting!

PRAYER REQUEST: Please say a prayer for Ayla to have a negative test result on Monday for C-diff

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?...update...

Yesterday I posted about the conflict I was having about getting Ayla the H1N1 vaccine. I closed the post by saying that I would update you when I made my decision. I actually made my decision that afternoon. I went to one of my weekly workout sessions and spoke with some ladies who had gotten it and turns out there was a clinic giving them for free locally. So I decided I would just call Ayla's dr's and see what they said.

Well as I expected all the doctors..and I quote: "Highly reccomend that all children regardless of illnesses have the vaccine, especially those who carry respiratory conditions."

So after hearing that information I took the fact that there was a clinic open that day and people for me to talk to about it as a sign that I should do it.

So I took Ayla along with my step-mom and her kids to get the shot. I have to say other than my normal "germa-phobe-ness" I was relatively calm. The shot was given just like the flu, she was given the injection (the inactive form) and has been great ever since. There is a 2 week span of time where she will still be suceptible to the germ but after that, its one less thing for us to worry about.

And for a worrier like me, thats a great thing!

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

Out of the mouths of babes...

So for most of you that know me and Larry and Ayla, you know about how difficult it was finding out about her diagnosis of Cystic Fibrosis @ birth. Especially since we had no knowledge of any family history of this gene that had been with us all along! And after we went through all the surgeries and learning more about how fast life can change on you, we were afraid to even murmer the words "getting pregnant again"... We hardly ever talk about it...it's like when one of us wants to bring it up we can see an unspoken fear rise up in the other and we blow it off as something else. Lately though we have let ourselves go as far as to think about names IF we ever have any more children. And thats a fun game to play. But its only a game. So yesterday I was taking a bath (which is a great time to think, eat, cry, heal what ails you or anything else) and I was thinking about how nice it would be to be living in that dream that I could just say "lets have another baby!" and not worry about what I will pass on to that child...or if I didnt pass those genes on the guilt I would feel for having a healthy child when Ayla lives with Cf... So I began to pray about it...and I just said: "Lord, please reveal to me your plan for my family. Please let me know in such a way that I can understand it and receive it. I want to know if we should have more kids, if thats in your will for my life. I need to know that I can have peace about it so I wont worry AS MUCH. Please let me know, I will wait to hear from you." After that I went on to finish my bath got out and carried on as I would any other day. And just a few minutes ago I went in to wake Ayla up from her nap today. I carried her to the couch for some snuggling time and in her half-woken state she murmered these words: "What are u worried about?" I said WHAT? again she said "What are you worried about?"....."Me?" I asked her why she said that..she just repeated herself again...and just changed the subject. I couldnt help but wonder, had God given my 2.5 yr old daughter a word for me? Because everybody knows that if you want me to pay attention to something important let it come from my child. So thats what I am podering this afternoon a little over 24 hours after requesting to hear something from God.... I can't believe she said that! What am I worried about? AMAZING

C-DIFFicult!!

For the last 3 months our daughter Ayla has been dealing with a lot of potty-problems. Because of Cystic Fibrosis a lot of the symptoms she has been experiencing can be mis-interpreted as effects of an incorrect enzyme dosage. I really have to stay on some of her Dr's because when you have a child with a chronic illness, sometimes problems aren't always explored to the fullest extent. So after a month and half of Ayla complaining of belly pain, very frequent daily diarrhea I called Shands GI (Ayla sees Dr's @Shands twice a year for Billiary Atresia). And they ordered a stool-study right away at my local lab. Low and behold that came back POSITIVE for C-diff. We went through a round of antibiotics and tested for it again and was NEGATIVE! So just to be sure we had killed the bug we did another stool-study after a week of no meds. And it cam back POSITIVE-again! So now we have her on a different antibiotic and are praying this is the last time we will have to deal with it.

The crazy thing is...most people get this from hospital stays or long periods of time using antibiotics...and Ayla was neither of those.

So please pray with us that the next stool study we have will be negative, and she will begin to feel better, and for the days of 10 BM's and whimpering from belly pain to be far behind us.