What? Weight Gain???

So, we don't want to jump to any conclusions, or get too excited, but....Elena got on the scale this morning and was up to 42 pounds! That is a little under a two pound weight gain while also over coming a nasty cold. She usually vomits her way through sickness. We are so happy with this turn around!

She decided to start drinking milk again, but only if it is in a certain cup with three ice cubes. I'll feed it to her while standing on my head if that is what will work!

This morning, we all sat down and had a ramin noodle party for breakfast with Elena. Ethan thought he was in HEAVEN! He sat at the table with us while wiggling a little jig of glee as he ate his noodles. Elena ate her entire bowl ( a bowl worth 700 calories after we added butter and olive oil). Andrea, I realize that the sodium count in ONE bowl would do you in for the month. Of course, you all know that Elena needs the extra sodium...so on top of the 1560 mg of sodium...she added more salt! Sometimes it is hard not to gag while making her meals:)

We may have finally overcome the 40 pound plateau! As usual, we will keep you posted.

Great Strides Success!

It was another fabulous year for "This Team is Brought to You By the Letter E". We raised just under $6000. The entire event brought in $600,000!!!!! It is overwhelming to see the amount of support our friends and family give us with CF. The generosity and support make the tough days so much easier.

Elena continues to do VERY well. Her weight had gone done, but is slowly creeping back up. She is steady around 40 pounds. She has not fallen below 40 in several weeks, so this may be a permanent thing! Praise God!

She has been doing her vest treatments daily and reeping the benefits. She has defeated colds and sinus allergies better than her healthy family members. God rocks!

Elena has a quality of life today that was not even available for kids her age 20-30 years ago. Most children didn't live past Elena's age of five. The money you raised goes directly into funding research that searches for a cure for CF. We are so close to a cure, all the while Elena is provided with more time because of all the new found treatments.

Thank you everyone for being a part of our team and prolonging her very precious life.

The walkers, the team leaders, the donators, the prayers...ALL are Elena's heroes.

Last Chance!

Last chance to join our team for Great Strides this Saturday at the Georgia Tech Burger Bowl.
http://www.cff.org/Great_Strides/JulieGoodrow & donate to
"THIS TEAM IS BROUGHT TO YOU BY THE LETTER E"!!!!!

Every dollar makes a difference. We are SO close to cure for Elena. Help us get there! Thank you and God bless!

Team 65 Roses: Elena Style

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!!!!

Another Pound and ANOTHER!

Today was Ethan and Elena's Annual check-up. The Pediatrician was more than thrilled to see how giant Ethan had grown. He is in the 95th percentile in height and weight at 26 lbs and 9 oz and 32 inches tall. He is our giant boy!

Elena had a MAJOR break thru this week. The hungry pill continues to work wonders! She is now weighing 39.2 pounds at home...at the Doctor she weighed 40 with shoes and clothes. Last weigh in at home was 37. SO...this makes a solid 2 pound weight gain for the month! Way to go Elena! We are so glad that she is back to 40 pounds again...even if it took 6 months to get there.

A Precious Pound!

YES! Elena gained a pound! So, it has been a long road, but she has finally gained 1 pound. So know she is 37 pounds. We still need to get her up past 40, but any direction up on the scale is a success.

Also, she is finally understanding the value of her vest treatment that she does daily. Today when her treatment finished, she said," Mom, I can breathe better this morning. I think my vest helped." Yes...yes it does!

Wa-hoo!

My Hungry Pill

Elena started an appetite stimulant and WOW! She is hungry all the time! YEAH! Something is working! She has started drinking milk as well. She takes a half of the pill with breakfast and then the other half with lunch. She calls it her hungry pill. Still no weight gain, but at least she is eating more.

A funny story about CF...Elena was with a group of young girls at church the other night. She announced that she had CF. They asked what that meant, she said, "I'm not quite sure, but I have to take enzymes before I eat." Later she asked me, "What is Cf for?" translation "What does CF stand for?" I said, "Cystic Fibrosis". She replies, "Oh yeah! 65 Roses"