Elena was going to run in the ING Tot Trot again this year. The only difference was...she was sporting everything 65 Roses. She was so happy about being a part of the team. Unfortunately, the event was rained and thundered out. She did however get a medal. She said, "How can I get a medal when I didn't run?" Mommy and Daddy said, "Take the medal and run! You run your race everyday with CF!" This answer was good enough for her. She wore her metal the rest of the day (and today)!
Elena's weight is tettering back and forth, but has not gone up. The "hungry pill" continues to make her hungry...so it is still working. Ya-hoo for that!
Also a MAJOR news update on CF research. Below I copied what another CF mom wrote from her blog. Her daughter , Caroline, is not even a year old yet and was diagnosed with CF early like Elena. She simplified the good news perfectly.
"First of all, they are working on new medication for Caroline's digestive problems. Right now she takes 3 pills with every meal or snack (and that number is likely to increase soon). {Elena takes 4 and started with 1/2 when she was a baby..the amount increases with weight gain
}She would only have to take 1 pill with each meal or snack with the new meds. Plus, they are working on a liquid form for infants...you can imagine how much easier that would be!
Even more exciting is the development of a drug that could potentially cure the basic defect in CF patients. It makes the defected protein work properly, which means chloride passes through the cells and prevents all that troublesome sticky mucus from forming. This means better lung health, which is literally a life saver! I knew about the drug but did not realize they would be testing it on CF patients with Caroline's mutation, DF508 (There are over 1,000 mutations that cause CF). They started Phase 2 of the trial to test for safety and effectiveness of the drug. Keep your fingers crossed and bless the people who have volunteered to take the meds in the trials=)Caroline is so young and things already seem so promising for her future health. "
This is great news for Caroline, Elena, and ALL those struggling with CF. Thanks to Caroline's Mom for the simplified explanation!!!!
