"Everyone needs a place to call their own"

Tuesday, December 29, 2009

Ayla-Update: "Proceed with Caution"

So I just had to update everyone on Ayla and our "new-plan" from the doctor's. Things have been going really well. She is learning to like some new foods and her belly issues are about 80% improved! She hasn't had any grease & hardly complains of belly pain at all anymore! And for those of you who know me or are Cf''ers yourselves you know most of my posts have something to do with poop. And just now Ayla had her first BM of the day and it was a SINKER-people!! That's like the poop all of us cf parents dream about for our kiddos and she had one today. I have to believe that this new diet is really agreeing with her.
And to top that off, we went to the pediatrician yesterday to check on this cough (which was just a cold) and Ayla hadn't lost any weight since he'd seen her! In the meantime she had had a 4 day stomach flu and total change in her diet. Hardly any fat at all!! And we are maintaining!! I am so excited to see what she will weigh at our next visit. I feel so much better about what food I am giving her now and would love for her to thrive on this diet.
So it has really been a great few days, we are doing treatments (CPT & Nebs) and just hanging out together.
Yesterday I also made a "drop" aka: stool sample yesterday, they are testing her fat & carb absorption. So I am really interested to see how those come back.
Just wanted to keep you all in "the-loop" with Ayla and her progress. I really feel like this is the beginning of a turn-around in her GI health. It's crazy how dietitians tell me to pile on the fat and that may have been part of our problem in the first place.
I guess you live and you learn.
Hope everyone had a great Christmas and Happy New Year!


Saturday, December 26, 2009

We had Such A Merry Christmas!

Christmas was so wonderful this year, we at the Tucker house had a lot to be thankful for. Ayla was really into all the fun this year and got everything she wanted and more! My husband really surprised me and got me a MACBOOK! I was so excited...I have been dreaming of one for so long. I enjoyed watching my husband open all his gifts...he got some cool things as well.

Ayla also got a "christmas-cough" yesterday. She starting this yesterday morning, so we hope this just goes away on it's own. I will probably take her to the Dr. on Monday just to get a listen...
After our morning at home we went to my mom's house for a late lunch. It was very good..I was so tired I couldn't move!
2009 was such a great year can't believe it's almost over~

Update on Ayla's eating: She's really been adjusting well, I haven't gotten her totally used to the milk supplement they prescribed yet. But as far as the food i've offered, she's done amazing!
And we have had really good BM's, no grease, and hardly any belly pain.


Wednesday, December 23, 2009

Shand's Update: Full Story...

My mom, Ayla and I left on Monday morning for an afternoon appointment with the GI Dr's @ Shands. They wanted to see her because of the re-occurring C-diff she's been having.
Before leaving Ayla contracted a stomach flu over the weekend....and the morning before we left her daddy had it as well. Driving down I felt a little "weird" but was not missing this appointment. We made great time on the way down, we were hungry so we stopped and ate at Cracker Barrel for lunch. Ayla was really sleepy and grouchy. Her little bottom was hurting from going to the bathroom so much.
We got the appointment right on time and waited for the Dr's to come in. I had a list of topics to discuss, mostly about my concerns in the previous post. The Dr's were very thorough, they spent over 30 minutes with us. When they first came in Ayla looked very lethargic and was dehydrated. They considered admitting her for that, but after drinking Gatorade she perked right up. I began to ask them my questions about the labs we've had and if they were testing correctly for c-diff...Turns out they were...bummer! So she really did test positive for c-diff. I also told them I had made the decision to take her off those meds and start a diet of less fat and sugar to see what happened. And that I had seen some improvement before this virus happened.
The Dr's left the room and came back in after talking things over with each other and this is what they suggested:
They want me to limit fats and sugars from her diet, she can have no milk. And they want her to eat plain yogurt as many times a day as she will. Basically what they are trying to do is give her belly a rest so it doesn't have to work so hard and it can heal itself. They are also prescribing a formula for her to replace milk, that's calorie dense and is pre-digested (so it's easy on the tummy).
This will be a major change for us all because basically everything she usually eats she can no longer have. I have to change my way of thinking from all fat to no fat...I am hoping that she will take to it well. And it would be awesome if we could broadened her "food-horizons" in the midst of this. And to top it off it would be a miracle if she could thrive on this sort of diet. I would feel much better about the types of foods I was giving her if she could eat like this all the time.
This is only temporary though, they want her to maintain this diet for a couple of months to see if we can see a major improvement with the C-diff. And if not they want to admit her for a few days to see exactly what she eats and do the required tests at that time.
On the way home we didn't even make it to I-10, I got so sick we had to stop and get a hotel. Ayla was so over riding in the car and she wasn't feeling well either. We are so grateful to Nana for being there with us. What was supposed to be a quick trip turned into an overnighter...But we are ALL better now...

Please pray that this natural approach will work for us!

*they also tested all her liver functions, I will update you on that once I get it*

Thanks so much for every one's concern and prayers over this,

Friday, December 18, 2009

25 Things I love About Ayla...

A little bird told me I should do a post totally dedicated to how amazing Ayla is...so here it is..so Glad I did....I have an awesome child!

1.) She has probably a 5oo word vocabulary...shes 2.5..wait..maybe that's an understatement...
2.) She wakes up every morning raring to go...
3.) She doesn't ever meet a stranger...
4.) She is the happiest child...
5.) She does all of her daily treatments so well and hardly ever complains...
6.) She plays well by herself...
7.) She remembers things from a year ago with no problem...
8) She can recite almost every nursery rhyme by heart...
9) She loves music...
10.) She is so girly and loves doing girly things...like putting on mommy's makeup...
11.) She is a daddy's girl...
12.) She says..."I love you" when she knows she's done something wrong...
13.) She is so healthy..despite our speed bumps...we are so blessed she is doing so well...
14.) She is so beautiful
15.) She is so very creative and imaginative...
16.) She goes to sleep at night without a whimper and sleeps all night in her big girl bed...
17.) She is a big helper to mommy...
18.) She is defying statistics every day and doesn't even know it...
19.) She actually likes to take her daily medicine...
20.) She memorizes books by looking at the pages..after a few times of having them read to her.
21.) She is so sassy...and we love it...
22.) She plays too rough with her boy cousins and gets in trouble....reminds me of myself...
23.) She knows her Dr's by name and carries on full conversations with them at check-ups...
24.) She is VERY independent...
25.) She can say her ABC's correctly, count to 20, and knows the words to Lady-Gaga's song Papa-Papa-Razi! So funny...I have to get it on video for you all..

Just wanted to take some time to point out just some of the wonderful things about my Ayla...she is a blessing every day to everyone in our family!

Thank-You Ayla for being such a bright ray of sunshine!

Love your mommy,

Tuesday, December 15, 2009

The Saga continues...to Shands we go!

Well...Well....Well....what do you know....Ayla was positive for c-diff AGAIN!
I took her to the Dr Tuesday because I have not been seeing the improvements I should. The Dr. was pleased that she hadn't lost any weight. And went on to say that he thinks that we need to re-evaluate the plan of action here. (AMEN!) We have been treating this and nothing is working. The meds they had her on apparently are very strong and should not be used for a lengthy time period. He wanted to talk to the Dr's @ Shands about this.

In the mean time we would do another stool sample..results are above.

So on Tuesday afternoon I get a call from the Dr's at Shands and they would like to see Ayla on Monday. Yes...that's 3 days before Christmas! My mom and I are going to drive down and possibly make the trip in one day.

Everyone involved thinks it's a good idea for us to get Ayla in front of these Dr's. Because she looks so good. She is not showing the normal symptoms of someone who has c-dff according to her pediatrician.

So now my mind is going a million miles a minute...doing research on what else could cause her loose, nasty, greasy stools and this belly pain. I am now forming a list of my own conclusions which could be:

1.) food allergies
2.) enzyme diagnosis
3.) over-abundance of fat in diet
4.) Lactose Intolerance

Our labs in this area are.....well...are not the most "Hi-tech" meaning when you get a stool study done for c-diff anywhere else..they test not only for the presence of the toxin...but the amount. Because in case you didn't know...you have c-diff toxin in your poop...(little nugget of information for you all). And the lab that I have had like 6 stool studies done at has been testing ONLY for the presence...NOT the amount!! Which is like....so stupid!!

So.....I am getting mentally prepared...packing my arsenal of questions...for this trip to Shands. I refuse to come home without a plan of action. Some kind of test to prove that plan will work. And something I can do for Ayla until that plans works.

Thank goodness for doctors, but thank goodness for mommies intuition. I know that I am lead to do the things I do for Ayla by god. It's a full-time job to be her mom....there's no title I'd rather have.....than...

Nurse, nutritionist, mom,
cook, maid, stylist & friend...

Updates to come after visit with Shands. Please keep ayla in your prayers.


Monday, December 14, 2009

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,

Thursday, December 10, 2009

I want the answers I want...

This week has had my questioning a lot of things...Does anyone ever feel like "things just aren't going the way they should?" and "this can't be part of any good plan?"

I have spent a lot of the last few years trying to figure out this puzzle that seems to be my life.
Sometimes things will go your way and you'll feel like the luckiest person on the planet, as soon as that thought enters your mind something else will come and knock you down.

Not this is all about problems or whining....But this week I have realized well....that I have issues. Someone else's good news can make me angry at times. I don't really know why, I'm sure I am happy for them somewhere inside...

It was brought to my attention this morning from "a little bird" (you know who you are) that I can look on someone else's circumstances and be envious of what they have or their mentality and they might be looking back at me and wanting what I possess.

So I can feel sorry for myself that my daughter has Cystic Fibrosis and that I can't have another baby without that possibility....Or_____________________________________?

I am sordoph stuck there....OR what? I can tell you what you want to hear me say....but will that make it true?

Don't get me wrong...I know I am lucky! Everyday my child amazes me more and more and I could not imagine her any different.

Well I said that but I lied...I could imagine her without Cystic Fibrosis...This is how it would go: She would wake up in the morning...and eat whatever she wanted...mommy wouldn't be saying no to foods that aren't high in fat and calories. We could forget the enzymes. After that we would watch her favorite movie...we wouldn't have wait until we did Chest Percussion Therapy for that...so she would forget that she has to do this twice a day for the rest of her life...we would then go outside and play or anything else she wanted to and not worry she was sweating too much & loosing sodium or for that matter burning up those precious calories...We could sit together and talk about when she will go to school and what she will be when she grows up...and not have to think of anything but just that...and believe it....

I know that God can heal all wounds of the heart, all sickness, all situations...and he has mended my wounds but they are not healed...I can look at this blog and know that I am progressing in my struggles, because for the longest time I would not speak of it.

I know that this post may not be the most uplifting or fun, but this week there have been some things that have got me wanting answers...

I feel like if God would show me a vision of Ayla being an old woman surrounded by her siblings, her children, and grandchildren...that it would make it all worth it to me...

But I suppose that's like a scientist forming a conclusion from a hypotheses....His end result may be the same but it wouldn't have merit unless it was proven through experiments...

We all want the answers we want. We may not get the answers we want. That's the scary part. I guess we just have to enjoy the life we have while waiting for those answers and hope for the best.

*To waiting....and seeing....CHEERS* ding-ding.....

Monday, December 7, 2009

Keeping up with "The Jones"

As christmas nears I am feeling really stressed. For those of you that have already gotten your shopping done and mailed your Christmas cards...Well that's just great!

But for me, I have not gotten anything done. Every year I want to one-up myself on gifts and do better than I did last year. Being self-employed we don't get Christmas Bonus' or anything cool like that. We pay the bills and then whatever's left...we do christmas.

Ayla is at such a fun age this year being 2.5 she really understand Christmas and is totally into it. We just want to go all out for her and each other. My husband Larry always says "he doesn't want anything or that he would rather be able to give us (my daughter and I) a great Christmas than get a bunch of things himself." Isn't that what all guys are supposed to say? But they can't really mean that. I am feeling guilty this year because I really want to get him somethings that he doesn't expect...But since I don't work..he knows how much money I use because he gives it to me...So it's hard to pull a fast one over on him.

I would really like to be the perfect stepford wife and have the perfect home, christmas cards mailed with smiling faces, have all the best gifts bought for every member of our family, bake fresh cookies, and be a size 6 all at the same time. But Ive come to the realization that I cant!

So I hope all of you ladies out there realize that we can only do what we can do.. If the moneys not there we can't go into debt trying not to hurt anyones feelings. The power bill is more important than our image.

We can't all keep up with what everyone else is able to do. But we can help someone in need and take care of our families as best we can...and happy with that!

I hope you all enjoy doing what you can and be okay with what you can't!

Thursday, December 3, 2009

My Funky Mood...

Since last weekend I have not had a very good attitude. I've been easily annoyed, bored out of my mind and just plain stressed. I've been told that I don't deal with stress well...who knew?
"A little bird" told me that maybe the reason I'm feeling this way is because with the holiday last week and having friends come to stay with us, I had something to look forward to.
And as it always does life tends to make it's way back to the normalcy we love to complain about.
This week I have hardly gotten dressed at all, the only time I did look half-way descent was to go to Bootcamp twice this week.
We as a family meaning our entire family-every branch on the tree is feeling this economy crunch. Some of us are suffering from the housing market crash and others are just trying to make it in sales of some sort.
But it all SUCKS! There I said it!
Larry and I are definitely on that list, we have made many bad financial decisions in our time. And I have to admit that some of them were due to my personal lack of patience. We couldn't wait to make major decisions, we flew by the seat of our pants and we've flown right into a deep-deep hole.
I know that so many people are going through these types of struggles. And with the holidays approaching it doesn't make it any easier.
Larry and I have learned from our mistakes and are paying for them...We are in a "season" of our lives and we have to pray that spring will come soon.
And that God will continue to show us the right paths to walk down in all facets of our lives.

*for all of you who think I'm complaining please see post: "I'm Thankful for..." and know that I realize I have ALOT to be grateful for...this is my "breathing room" and I needed a breather today, so thanks for listening*


Wednesday, November 25, 2009

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!

Monday, November 23, 2009


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)!

Friday, November 20, 2009


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"


Tuesday, November 17, 2009

Join Team Ayla!

donate to my causeI 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:

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.

Monday, November 16, 2009

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.


Sunday, November 15, 2009

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.


Thursday, November 12, 2009

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! :)

Wednesday, November 11, 2009

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

Monday, November 9, 2009

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.

The Food Nazi

Friday, November 6, 2009

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!


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!

Thursday, November 5, 2009


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

Wednesday, November 4, 2009

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

Tuesday, November 3, 2009


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.