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

Loose Teeth and More babies!

Elena lost her first tooth today! She was extremely excited. It has been loose for over a week and she has been very anxious about loosing it. She said that reading "Junie B. Jones Toothless Wonder" helped her prepare for what might happen when she lost a tooth.

I'm sure most of you have heard already, but if you have not:

We are pregnant with our FOURTH! We are very excited (as you may expect) because we love children. Joel and I knew from the day we said "I love you" the first time (back in April of 1996) that we wanted at least four children. Once Elena was born with CF, our plans stalled. It took us four years to decide to have another child. We opted to adopt to prevent the risk of CF. So Ethan was our second child. We then adopted Emily.

We easily could be consumed by fear of CF with our fourth child. However, Joel and I have nothing but excitement. We feel that we are prepared no matter what the outcome. We are certainly equipped to handle CF or numerous complications at birth after all Elena went through. However, we certainly are praying for health.

We feel so blessed. Thank you to our friends and family for the prayers!

CF Appt. Follow Up

Elena had her follow up appointment with Dr. McKean yesterday. Her lung function jumped back up to near normal! Wa-hoo-whheeeeee! We are awaiting the results of her pseudomonas test. If she tests positive, then we will be adding in a new nebulizer drug to her routine so the pseudomonas can't continue to do damage to her lungs...and if treated aggressively we could get rid of the pseudomonas all together (which we have done once before when she was under a year old).

For now, we are not scheduled back until November 23rd. Thanks for all the thoughts and prayers. God continues to work through each one of our fabulous friends (and of course our devoted family!)

What? Check again...and again..and again?

Elena gained SIX pounds since her last visit 3 months ago AND grew 4 inches!!!!! It was such a drastic change that the CF staff weighed her 3 more times! Hallelujah!

However, the not so great news is that her lung function has dropped down quite a bit. Dr. McKean felt that it was probably related to the cough that won't go away. We are starting her on antibiotics and increasing her nebulizer meds for the next two weeks.

We will go in for a follow up visit at that time to see if we need to get more aggressive in treatment by adding the super duper CF nebulizer antibiotic (TOBI) back into her routine. Elena was on an inhaled antibiotic in the hospital in December and then only one other time before that when she was a baby. She has been very fortunate that it has not become part of her regular care. Our pocket books are just as thankful ;)

For the next two weeks we are going to keep coming at this yucky cough until we can shake it for good!