New Pictures

Today I picked up the pictures of the kids. We had them done a couple of weeks ago. It has been 4 years since I had their pics done all together. I have posted a few of my favorites below.

Memories

Well, I was able to upload my one true media video of Emily to YouTube. You can access it on my page. As I watched it I took a little trip down memory lane, so to speak. Most of the pics and video clips are from Emily's first stay in the hospital at UNC when she was diagnosed. I remember how little I knew of CF then, and how scared I was. Those three weeks in the hospital were the longest three weeks of my life as I educated myself about cystic fibrosis and as I learned how I had to care for her. During this time one amazing story comes to mind. . . . a week before we headed off to the hospital we visited the local library. Emily was insistent on checking out a book called Philadelphia Chicken by Sandra Boynton. Okay actually she threw a fit about getting it. It is basically a book of songs with the accompanying CD. I was reluctant to check it out as we tend to misplace CDs at times. Emily pleaded and pleaded and finally I gave in. We started listening to it in the van--it had some catchy tunes--and basically she loved it. We all did and it actually created some happy fun-loving times while traveling down the road singing at the top of our lungs during this very emotional time. When we went to the hospital a week later of course the book and CD had to come with us (never mind we would owe a late fee by the time we got back). About a week after we had been at the hospital I was perusing some materials the nurse had given me from the CF Foundation. One item was a newsletter--a particular article caught my eye . . . I quickly discovered that Sandra Boynton was donating proceeds from the Philadelphia Chicken book and CD to the CF Foundation. I immediately began crying as I thought back to that day in the library when Emily insisted we check out the book--it was as if she knew she needed this book to help her (and all of us actually) get through the coming weeks--a time when she had just been diagnosed. This book had carried us through a very hard time and it was obviously meant to be! I found the author's website and emailed her my amazing story of how Emily just knew she had to have this book and all of the joy and comfort it brought her during the time fo her diagnosis and first hospitalization.
Here's a link to the book if you are interested. It sure can make you laugh, smile, and sing on the worst of days. http://www.amazon.com/Philadelphia-Chickens/dp/B0001ADB6Y
You can listen to some of the samples too!

A Bit Delayed

Had to laugh when I logged on here. Okay, was it really April when I started this???? Well to make a long story short, I was promoted to principal shortly after that and well let's just say life has been very busy.
So, Emily's PFTs have slowly declined from 126% in April to 105% in December. Now, don't get me wrong, I know that 105% is really good, I just have this mindset that if we can achieve 126%, then that is where we need to stay. In my heart I know that when a "cure" comes along it will make a difference in Emily's life, but it will not undo any damage that has already been done.
So, with today's report it wasn't the best, or the worst. We have done 3 weeks of bactrim--two week off--got sick again, 3 weeks of clindamycin, and still not where she typically is after a couple of rounds of antibiotics. So, we are going to do two more weeks of clindamycin and see what happens from there. Emily's weight has dropped to the 35%ile--so we are starting Scandishakes to get her some extra calories.
It was a long day up to UNC, as always, but well worth the drive for the care Emily receives. Hopefully we can get her back to where she can be in PFTs and weight in the next few weeks . . .

Simply Amazing

In my original post yesterday, I said I was going to recap Emily's diagnosis, however, Emily had her three month check up today and I couldn't wait to post the results.
This was the most amazing visit! Emily's PFTs were 126%! The average PFTs for a seven year old with CF is 95%! So, you can understand how exciting this news was for us! It was her best EVER! Also, for the first time EVER, Emily moved to the Outstanding category in terms of her weight! Nurse Sheree told us it was like getting an A+ on an AP English test. I couldn't agree more! Now, I pray and pray and pray that we keep her here! While weight and PFTs were phenomenal we did have a lengthy conversation about the Ph probe test results from two weeks ago. The data showed Emily is having many episodes of reflux, even with 30mg of Prevacid twice a day. Dr. Davis is consulting with the GI specialist and will let me know on Monday what we will do to address this!
'Til next time . . . .
Cheryl

Welcome

Hello, for those of you that don't know me, I am Cheryl Lawrence, a working mom to three wonderful children, Emily, Douglas, and Donnie--and an amazing, supportive husband, Seth. Our daughter Emily was diagnosed with cystic fibrosis in February 2005. This was a life altering time for us and it began my journey of learning about and understanding cystic fibrosis so I could provide the best support and care for my sweet little Emily.
I was prompted to start this blog because (1) I have always loved to write to express myself and (2) I have been inspired by Nate's blog (www.cfhusband.blogspot.com) for a couple of months now(if you have never been there it is an incredible story-check it out!). I have so loved following his blog--how he has perserved Tricia and Gwyneth's story and made them real to me and thousands of others. I thought creating my own blog would be a wonderful opportunity to perserve Emily's story and life with CF. And so, I will begin her story in my next post with the hopes that one day she will want to continue it herself. Several of my next postings will be reflections, and in a way, therapy for me as I think back through the past three years when cystic fibrosis entered my life and the life of my family.