And a Partridge in a Pear Tree...

(taken at my parents for our BFG Pretend Christmas...thanks to Will for this name B (Bostelman) F (Freeland) G (Goodrow)...taken PRE-flu outbreak)

Ethan, Emily, and Everett were diagnosed with Influenza Type A on Tuesday of last week. The moment their diagnosis was confirmed, we sent Elena out of the house. She has been living with her Grandparents for a week now and is symptom free! It is a good thing we sent her right away (at the Doctors insistence) b/c since that day we have been cleaning throw up, doing every song and dance to get the medicine down the kids (I even sang "A Spoon Full of Sugar" while whirling and twirling through the Candy Cane Forest...two movie references here), doing 4...no make that 7 loads of laundry a day, and praying Elena would stay healthy. Oh, did I mention that Daddy had been out of town all that week? I should be exhausted and cranky. However, I've got friends nearby that have made food drop offs, medicine drop offs (thanks girls) and a ton of family offers to help out. So instead of tired, I'm very grateful!
After a trip to the doctor and the hospital on Saturday we learned that:
Ethan has the flu, pneumonia, and an ear infection
Emily has the flu, severe bronchitis, and an ear infection
Everett has the flu and an ear infection
and a Partridge in a Pear tree!

Elena has NOTHING! Thank you Dr. Miller for your quick action to remove her, thank you Dr. McKean for the quick meds to protect her, and thank you grandparents for keeping her for so long! She thinks she is on vacation even though Nana continues to do homeschool with her.

Today the kids are doing better. The fevers are gone, the smiles are back, and the sibling bickering is right back where it was two weeks ago. Of course, there is a few hugs and sweet gestures here and there to keep a mother's heart happy.

It has been surprisingly nice to be stuck at home. Our home is decorated all festive, the fireplace stays lit and warm, and the advent wreath is lit every meal (the kids are WAY excited about the fourth candle being lit yesterday...I have to admit that I was, too!) The flu forced a slow down and I think it came at just the right time.

I hope you all have a chance to slow down and really enjoy the joy that the birth of Jesus brings! Merry Christmas!!!!

Thankful

We are so thankful for Elena's good health. SO many people have helped Elena to be at the great spot where she is. Thank you to ALL of you for your hard work and efforts to keep Elena healthy, growing, and strong. Ethan, Emily, and Everett especially thank you...they are so happy to have their big sister Elena.

Lung Function Improving!

Why is it that everytime I go to type "lung" I type "lunch" instead? Must be hungry or the thought of getting food in Elena never leaves my mind. Could easily be either!

Elena's visit to Dr. McKean for her Cystic Fibrosis wellness follow-up went better than expected! Elena has had a runny nose this week and the end of last week. She has been totally herself thru it all, but we have learned that even when she is acting normal, her insides can be going haywire. SO, we were surprised to have Dr. McKean tell us that her lunch...I mean LUNG function is the best it has ever been and that it improves with each visit. WAAAA-HOOOOOOOOO! Joel and I feel that her weight gain has been helping her overall health. She is actually a little chubby in areas! This makes us so happy. I have never been more happy to have to say, "Sorry, Elena...no seconds tonight." We N E V E R thought we would have that problem. We prayed for this day and God brought it!

The cold Elena has could be an infection. We will have results from her culture on Friday.

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!!!

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!

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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!

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