Thankful

This month as we write down and reflect on the things which we are most thankful, one thing continues to return to the forefront.

Last night while we watched Elena do her breathing treatments with Everett in her lap, our hearts filled with thanksgiving for God's gift of our CF free baby, Everett, this year. Everett sat in Elena's lap and pulled at her nebulizer with his giant baby cheeks jiggling from the vest treatment. We are so thankful that he will never have to experience the rigorous treatments that go with having Cystic Fibrosis. We are thankful that Elena is doing so great. We are thankful for our two adopted sweethearts, Ethan and Emily, that fill our home and our hearts with joy every day. Each of our children has been such a special gift. God is so good...ALL the time!

Our entire family has a cold. One by one we have developed runny noses. Elena continues to fight it off like a champ. Please continue to pray that she fights off the cold and nothing settles in her chest. She will have her next CF appointment this month. We are hoping for a boring visit. Those are our favorite kind!

Test was negative!

So, after being off the medicine to get rid of the Aspergillus, waiting to get tested after being off the Aspergillus, being tested to see if she still had Aspergillus, and then waiting for the test results...she no longer has Aspergillus! Praise God! So the good health for Elena continues forward. Prayers for Elena have always been so amazingly strong!

ABPA blood test done...now we just wait for results

Elena did great with her blood draw today. She screamed as she was told she could. Everett was sleeping and didn't wake up. Ethan kept saying, "Why is she screaming?" Emily looked like she might cry herself. They were all in the room with Elena for the big event. As soon as it was done, Ethan and Emily gave Elena a big hug and Ethan said, "You so brave Elena."
We will not have results of the ABPA test back for two weeks. Meanwhile, Elena will be treated for aspergillus for three months. If the bloodwork comes back positive for ABPA, then she will also take a steriod to help clear that up.

Meanwhile, Elena still shows no signs of ABPA. Thanks for all the offers to watch the kids while we went to the Doctor today. I got 15 offers to watch Ethan and Emily! It feels good to have such an awesome support system amongst our friends and family.

This picture is handy work by Ethan. How is it that a 2 and 3 year old are better with an iPhone than their Grandpa? ;)

Allergic Bronchopulmonary Aspergillosis (ABPA)

We just learned that Elena's recent throat culture tested positive for aspergillus. Her first time. Thank goodness she is doing so well otherwise and is not showing symptoms of ABPA. We'll learn more from the doctor tomorrow when Elena has her blood drawn. Hoping she cooperates like last time.

What is allergic bronchopulmonary aspergillosis (ABPA)?

Aspergillus species is a fungus that often lives in the airways of adolescents and young adults with cystic fibrosis (CF). When people develop an allergic reaction to aspergillus, it is called Allergic Bronchopulmonary Aspergillosis. ABPA affects about 2 to 11% of the people with CF. It causes inflammation in the lungs and, if untreated, can cause further scarring and fibrosis.

See more HERE

Thanks for your continued prayers. We are hopeful that this will be nothing since she has continued to be so healthy and shows no symptoms of anything more serious.

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!!!