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
Tuesday, April 8, 2008
Sunday, April 6, 2008
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.
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.
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