CF Awareness Video

Nervous Nelly...

Ok, so I have been pretty bad about blogging lately.  I have had so much going on lately that I haven't had much free time.  To be honest, I haven't had much of a desire to write.

The other day I said the reason I hadn't written was because I haven't had anything interesting to write about.....but that's not entirely true...

A few weeks ago we had our kickoff luncheon for 2011 Great Strides.  I am co-chairing the walk this year with 2 other amazing ladies!  I was under the impression that I would not have to speak at this event.  I thought it was going to be a learning experience for next years kickoff for me....well needless to say when I got to the event I found out I would be speaking for a few minutes about how CF has affected Ayla's life.

My mind immediately went into a tailspin, and my stomach started turning.  What would I say? How would I put the last 3 years of living with CF into 2-3 minutes?

Our representative from the C.F.F. opened up the meeting and introduced us and we each got our turn to share our stories.  I was the second person to go...I was getting so nervous and emotional listening to the stories.  I was actually fearful that I would be crying before it was my turn.

I pulled it together when my name was called.  I spoke about Ayla, her diagnosis, her issues, her triumphs and her personality.  I thanked everyone for being there, talked about the science and how much a new enzyme (Zenpep) has changed Ayla's life.  I ended with the reason we were all there, which was to raise money to save our kids.  To get the researchers and scientists the funding that they so desperately need to make "Great Strides" toward a cure for C.F.

After it was all over I cleaned my plate..which had gone cold from my inability to eat due to nervousness.  I was really glad that I spoke and felt a sense of pride after the whole thing was over.
The kickoff was such a great way to get people excited about Great Strides and to give CF a face and name.

I had so many people there to support me and who are signed up to do all kind's of things to help us this year.  I am so thankful to those people, you know who you are!

I can't wait to see what Ayla's Army accomplishes in 2011!!

We have our first event on Sat 2.26 2nd Annual Rummage Sale for CF, and I will let you know how we do this year!

Krisat-

Great Strides 2011....A lot is happening!!

The schedule for fundraising over the next few months is really beginning to fill up!  Which is such a blessing.  It's amazing to me the willingness of people to get involved with our cause and go above and beyond what I would imagine.

In December I was worried about how I would get everyone excited about fundraising this year.  I was worried that I myself wouldn't be the motivator the my team needed.  But January came around and Ayla's Army is off with a running start!

These are the events we already have "on the books" for 2011:

Great Strides Kickoff Luncheon Bonefish Grill 2//8

Prize Drawing Ticket Sales

2nd Annual Rummage Sale for CF 2/26

1st Annual "Steak & Take" March

2nd Annual "Party with A Cause" Schooner's Restaurant 

2011 Ayla's Army TShirt Sales -ongoing

This year is going to be a great year for raising money, I am so excited about the leaps and bounds Scientists and Researchers have made in 2010....Let's hope 2011 brings many more....Great Strides is a way for us to do our part.  

I get really excited thinking about the possibility that we could be so close to changing C.F. to mean Cure Found!  

Thanks to everyone has donated a prize, reserved a T shirt, RSVP's to an event, donated money, joined my team, and supported us so far. 

I can't wait to see what our total is this year!! 

The Destin Walk is April 30th-Contact me to get involved!!

-krista

It's the Season for Fundraising and Weddings and Birthdays!!

So this time of year has become a time that I look forward to.. It's a new year with a new start, Great Strides is in April and we are in full-swing!  I am working with an awesome team to make this year's walk one to remember!  I am really excited about all my ideas for this year.  I am going to try and do the same thing's I did last year and some new!

• Rummage Sale to benefit the Cystic Fibrosis Foundation (Last year we raised 1200$)
• T Shirt Sales (going on now!)
• 5 ways to raise $500 packets for my team members!
• Prize Drawing Tickets (with some amazing prizes)
• Jeans for Genes

Also in April my Best Friend is getting married and I am very involved in the planning process! I am having lots of fun and can't wait to see the finished product! I am loving being busy and certainly have lots to do.  Ayla is going to be the flower girl, so that's exciting! Any excuse to go dress shopping works for me!
Did I forget to mention Ayla is turning 4 in April too? YES I said 4, I can't believe how big she is!! She is doing great and is so entertaining.

Contact me for a shirt! They are really cute!! 20$

~krista

CF & Liver Clinic Updates Jan 2010

We started the morning off with the Liver Clinic @ Shands.  Ayla's Dr. is so good with her, she is the best little patient ever!

This was the first appointment in years where I haven't complained about some sort of tummy issue, the Dr. pointed that out to me! I hadn't realized until he told me, what great news!!
Her labs from the previous visit were running along the same lines of "almost normal" and for someone with Billiary Attresia that's normal and good.
We then went on to talk about something that's always looming over me...Liver transplant.  Her Dr. said that you never know based on a child at this age if they will need a transplant in their lives.  You can't judge based on how well she's doing now.  He could say he was a 100% sure she would NOT need one in 5 years, and he could say with CERTAINTY that she would NOT need one in 10.
He then went on to say those patients with B.A. who don't ever need one, often have blood work and files similar to Ayla's.  He also told me that the older a person is the better for transplant ( i didn't know that). All we can do is pray!  He also didn't need to draw labs so this made Ayla super happy!

We went to Cracker Barrel for lunch...the most fattening place around for Ayla...to kill some time...

We then had CF clinic ....they were so happy about her weight.  She had put on about a pound and a quarter since mid October! And went from 50th percentile (where she's been for years) to 53rd!! They listened to her and she sounded great! She practiced her PFT's and did great with those.  Then came the dreaded Culture....wow.....with age this is just getting worse!! It took 2 nurses and my mom and I to hold Ayla down...I absolutely hated it!! I will be so glad when she can bring up phlegm (?) on her own!
She smashed her finger in the door and screamed bloody murder throughout the clinic.  We had Dr's running in to tend to her little finger...so cute...My child never forgets ANYTHING like her mother and told her Dr she wanted to go to the "treasure box" and the sweet Dr let her have 2 toys since she had such a traumatic day!

We drove home and Ayla slept...It was a stormy day....but the appointments were uneventful....and for us...that is BEST!!

Thanks for keeping Ayla in your prayers...she is really thriving!!

2011 New Year, New Resolutions....

They are on every one's minds this time of year.  Pondering over how we spent the last year and what we want to change in the next.  Ayla has had a pretty great year health wise, she only had 1 hospital stay due to a blockage in Jan 2010.  Other than that no Pseudo cultures or IV anti-biotics, for a CF'er that's something to celebrate!!

And her liver condition (Billiary Attresia) hasn't reared it's head either..she has continued to thrive from her corrective surgery almost 4 years ago.  Labs continue to improve and weight is being gained at a wonderful rate! She is now 34.5 lbs!! I can remember her being 9 lbs at three months and never imagining she would be so healthy...Her butt is even starting to pooch-out more and there has been some cottage cheese spotted on those legs!!

We are beyond grateful to God for the miracle and blessing she is!!

As far as our family is concerned 2010 will always be thought of with some sadness, after loosing a child to a miss-carriage in May of this year.  But a lot has happened and I have come to terms with that.  We know we will meet that child in heaven some day.  We are hoping we will be blessed again with another child, and are waiting on God's timing.

Our business has thrived this year and expanded, in a time when success is hard to measure.  My husband has worked so very hard to provide for us and to allow me to stay home-we are so blessed this is an option for us!

As far as Goals for 2011 are concerned, I have a few:

- I want to be more organized in our home and business (this is on every one's list I'm sure!)

- I want to start scrap booking, I realized I have all of my beautiful photos on the computer and no-where else!

- I'll just throw the exercise one in here for kicks, since I'm hoping 2011 will bring a desire for this!

- I want to take time to read the bible more regularly (I think that's more do-able than saying I want to read it through!)

I could go on and on....But I guess the most important goal in life is to never stop improving yourself in whatever role(s) you play....Play them well....and for ME thats:  Wife, Mom, Child, Sister, Friend, Nurse, Cook, Maid, Counselor, Book-keeper, Writer and Coach!

~So Goodbye 2010 and Hello 2011~

~krista

Christmas 2010....finally

So I am a little late doing this post...but oh well.  Better late than never I suppose.  Christmas this year was awesome.  Larry and I decided this year to really make this one about others and it was so much fun doing so.  I made home-made gifts for family and Ayla even painted ornaments for everyone.

Ayla had an amazing time opening gifts, this was the first year she could really get into all the presents on her own and she was so into all of it!  She was beyond blessed this year and we even had to go through her toys and get a few bags together to donate so we would have room for ALL the new ones!

It was an awesome Christmas Day, we made so many memories and were so grateful for everything.  Larry got me a NOOK Color which is awesome and he got a EVO phone-that he has still not put down!!

Merry Christmas Everyone!

~krista