Tuesday, April 29, 2008


I've been wanting to do some highlights of each family member and today I feel I should start with Elizabeth. Probably because I've been in contact with someone from our local CF group about helping with this year's walk to raise money.

Elizabeth is a bright little girl with red hair that loves books and doing crafty little things. She adores her little brother, Seth. Elizabeth loves to play outside with her older brothers. Some days she very much enjoys aggravating her older brothers :) She has taught herself how to read and does a fantastic job at it and like her brothers has a way with numbers. Elizabeth loves to sing and attends a weekly singing group. This time around they are learning folk songs.

For anyone who doesn't know, Elizabeth also has Cystic Fibrosis. It's a genetic disease that's throws off the body's salt and water balance which causes the body's normal mucus production to go off kilter. This in turn causes a very thick sticky mucus that wrecks havoc on different parts of the body. The main concern is the mucus that develops in the lungs. Once it's in there it's in there AND it harbors bacteria. These bacteria cause flare ups which in turn cause more mucus which in turn damages the little air sacs in the lungs. It's not fun and there is no way to reverse the damage once done. CF exhibits itself in hundreds of different ways though and our daughter is extremely blessed in that she has NO lung problems. Instead she suffers from a blocked pancreas which means she can't produce the enzymes necessary to digest fats and protiens. This is easily fixed with enzymes she can take by mouth. Another recent complication manifested in her sinuses. Last year she had two sinus surgeris within months of each other. The doctor had to go in and clear out all the polyps that had completely clogged up her sinuses. I mean there were NO airpockets. The polyps had actually started causing the bridge of her nose to flatten out because there were so many trying to cram their way in there. The first surgery went really well and for the first time in a long time Elizabeth could breath through her nose. It was then that I realized she probably couldn't smell either. All those little stops by our roses for the past couple years where I told the kids to smell them and she probably couldn't. I just wanted to cry over that. She ate like nothing else after that surgery too. I realized also that she probably wasn't tasting the food right, no wonder we had spent so much time practically forcing her to eat. Sadly at her two week appointment the polyps were coming back. Had to start up a round of oral steriods and back on the nasal ones. Two months later it was if she hadn't had the surgery, the polyps were so bad. So we scheduled another. We had been warned, Elizabeth could be having sinus surgeris every 4-6 mos for the next couple of years but we were hoping. This last surgery took place in December and it's now almost May. The polyps started coming back but they weren't in her nose yet so we are just waiting but at least this time they have taken longer to form. We will be taking her in soon to check on them and see where they are at. The polyps form, of course, because of the mucus in her sinuses. It's so thick and sticky it aggravates the lining which causes the polyps to form.

Anyway, life for us is actually pretty normal. It could be a lot worse. Elizabeth is truly blessed. She is healthy and happy and some days full of more energy then I can handle :) Not to say I don't worry about her future. Most of the time I just won't let myself think about it. Her CF could take a turn for the worse and she could end up in the hospital for months. Looking farther ahead, she very likely will have a hard time having children if she can at all and that makes me very sad. So, I just don't think about it. Science has made so many advances in the last couple of years that we are very hopeful they find a "cure". In fact, they have just announced a new drug that has made it through phase one of its clinical trial I think and it's proving to actually reverse the affects of CF. We are keeping our fingers crossed.

The walk this year is on May 17th at Oaks Park. I didn't know in time to form a group to raise money but I will be going to help out with stuff like registration and helping along the trail. If anyone else is interested please contact Danielle Kilian dkilian@cff.org , they still need volunteers. Hopefully next year my life isn't so crazy (hahahahahhaha) and I can put a group together for the walk.


vaxhacker said...

Is that a geocache she's holding in that picture? It's funny what details you notice sometimes...

Sorry to hear about all the difficulties she's having to put up with, though.