So Happy and Blessed!

I'm always happy to see when there has been so much time to pass between postings on Elena's CF Updates. This means things have been too boring to post. Boring=Healthy! This is a blessing for sure!

The latest "boring" news is that Elena had her regular CF check up yesterday. She now weighs 65 pounds! She is 4 ft and 4 in. tall. Her blood sugar continues to be normal so there is no risk at diabetes (which is common with some CF patients). Best news of all, her lung function test results were higher than they have ever been! Take that Cystic Fibrosis!

Even BETTER news...Elena's newest baby brother, Everett does NOT have CF. However, he is a carrier. When we got the results (and cried and cried at the awesome news) Elena asked what a carrier was. We explained how CF was passed on in the most basic way we could and furthered it by telling her who all was a carrier in our family. She ended with the statement, "I sure hope I'm not a carrier." Hard not to smile at this thought, but we told her she was extra special b/c she was a DOUBLE carrier. This answer satisfied her.

So much to celebrate! Thank you all for the continued prayers. God is good!

Follow up Appointment

Great news! Elena's lung function is back up to normal! She went from 70% back up to the mid to high 90s! There was no rattling noises in her chest, everything was clear. Her throat culture from two weeks ago came back postive for moraxella catarrhalis which causes ear infections and sinus infections. Dr. McKean was quite pleased that he guessed right and gave her the right antiobiotic to kick this BEFORE we even knew what we were dealing with....even before we knew that Elena was sick! THIS is why we go to McKean...he is just that awesome.

The great news reminds me why we go for regular check ups to the CF doctor. He catches things that we don't see until it is too far along. Next thing we know we are battling a nasty infection that takes months to reverse instead of the mere days that this was fixed. Joel and I are in tune with Elena's needs regarding life with Cystic Fibrosis, but there are just some things that only excellent doctors can figure out!

So thank you Dr. McKean for being the best!

$11,000 and counting thanks to Rosebuds!

The Rosebuds race was this morning. Our little kids in blue all out running at Grant Park for a great cause. Kids helping Kids with Cystic Fibrosis. 29 kids came out this morning and together they raised over $11,000! Great prizes were given out and there were smiles a plenty!

Thanks to my awesome help and best of all, the sweet little faces that worked hard to train for their race day and raise SO MUCH MONEY FOR CYSTIC FIBROSIS PATIENTS! You guys rock!

This day makes me and Elena SO proud of what Rosebuds has accomplished in only 1 year and 3 races! Our Rosebuds have raised over $30,000 since our first race Last March.

This team was created all because my daughter said she was the Little Kid's version of Mommy's CF fundraising team. I'm so very proud of her and her GREAT idea.
Cousin Logan's first road race! His Mommy carried him the whole way.
Elena's brother, Ethan! Finished his second road race, but first where he ran himself!
Elena's friend Bobby getting ready to run super fast!
Elena's friend David making a sprint toward the finish line.
Elena with her friend Cassidy showing off their medals! Way to go girls!

When you see this picture of Elena, you will see how VERY healthy she looks. It is because of donated dollars that has gone into research for medicines that help MY daughter stay strong and healthy. With her strength and energy she can continue to give back to the CF community in a big way through Rosebuds. so other kids can reap the same rewards she continues to receive daily.

Go Rosebuds!!!

Rosebuds AND latest Clinic Visit

A week away is Elena's Rosebuds Race!! Kids Helping Kids with Cystic Fibrosis. She is now trying to raise over $1500!!! Help her reach this goal by clicking on the donate here link at the top right of her blog. She and thousands of other people with CF thank you!

Make an on-line slide show at www.OneTrueMedia.com

Elena had her CF clinic visit on this past Wednesday. She weighs 63 pounds! She is taller and fatter, both of which we are so very thankful for. However, her doctor heard a rattling in her chest and her lung function has dropped a bit. We have added an extra breathing treatment a day as well as two meds to try and kick this. She will go back in a couple of weeks to re-test her lung function.

We also had to up her enzymes to 5 pills prior to meals (only if she is eating high fat foods and not her latest craze...green peppers or salad without dressing). Her weight gain and stomach pains as well as change in her stools has caused this decision.

A nasty stomach bug has been flying through our home. We are on Day 10 of dealing with it. Elena has been the ONLY one that has been healthy through out the whole ordeal. Pray that it stays that way.

We will also wait to see what her sputum culture produces. Usually, the Dr. has to use a long q-tip to swab the back of Elena's throat. This causes almost as much anxiety as shots for her. However, Elena coughed up her sputum on her own! We did a victory dance and round of high 5's through out the office. She is growing up and it makes so many things easier for her.

Finally, Elena, Ethan, and Emily continue to be extremely excited about Baby E4. He is growing so big. Ethan says, "Baby get bigger and bigger and POP out!" We talked to Elena's CF Doctor and arranged that during Elena's next clinical visit in the first week of June, we will bring Baby E4 for CF testing. Elena ONLY wanted to talk to Dr. McKean about her worries and concerns with her new brother possibly having CF. When her Daddy asked her what they talked about she said, "Dr. McKean said a lot of big words that I understand but don't think I can repeat. Anyway, I feel better." This was great news because Elena couldn't talk about the birth of the baby without crying. She was worried that she wouldn't be able to hold the baby if he had CF b/c she can't be near other people with CF. She was worried that the baby couldn't come home for months b/c she couldn't come home for months after her birth. She was upset that someone else would have to take all those medicines and do the yucky vest. Joel and I are just glad that Dr. McKean told her what she needed to hear to eleviate her worries.

Thanks for the continued prayers.

Whoa! Weight Gain!!!!

Elena has eclipsed 60 pounds! We are so happy with her health and weight gain, it fills our hearts!

We had a party when she weighed 40 pounds (Chuck E. Cheese), a party for 50 pounds (Six Flags with Mommy), and for 60 pounds Joel suggested that he take her to France. She said, "Nooooo, not Paris! Let's do Chuck E. Cheese again!"

Deal!

So, yesterday Joel and I took Elena and her two siblings to Chuck E. Cheese. After Joel and I being out of town for 9 days, this was a nice way to have fun family time AND celebrate another weight gain milestone for our growing daughter, Elena.

When I look across the blog, I notice that there are very few entries. Many may think this is because I'm busy raising 3 little ones and making one new little one. Although this could easily be true, that is not the case. Really, I have not had a need to update except with good news every once in awhile. What a GREAT blessing! Joel and I feel so much joy for Elena's continued good health and excellent growing! Praise God!

Also, here is the video promoting Elena's upcoming race on March 19th! Kids Helping Kids with Cystic Fibrosis...she wanted to create this team, and it started up last year. Way to go Elena!

Make an on-line slide show at www.OneTrueMedia.com

We don't need no stinkin' applesauce!

FINALLY! After 6 1/2 years, Elena is swallowing her enzymes instead of having to break open the pills and mix with applesauce. This is HUGE! Way to go Elena. Mommy and Daddy are SO proud of you.

Now the 20 pills a day can be swallowed with ease instead of spilled on the floor as we carefully try to break them open:)

Good reports...and a Christmas Musical

Elena had her CF appointment. Daddy took the day off to help Elena get ready for having her blood taken. This is NEVER an easy thing for her. After 2 hours of practice and loads of tears, Daddy took her to her appointment. Dr. McKean told Elena that she could scream as loud as she wanted, but she couldn't move when it was time to take her blood. She didn't move and she DID scream. Dr. McKean said that she was the best screamer they had ever had in his office. He actually looked kind of shocked at how loud she can be. We DID warn the office before we came.
The rest of the appointment was full of good news; weight gain and improved lung function, RIGHT ON! Praise God!

Lastly, if you have kids...they may enjoy watching this 18 minute musical Elena was in called Scrooge in Bethlehem. She is the pink Shepherd...pink...of course!

Make an on-line slide show at www.OneTrueMedia.com