Tuesday, December 14, 2010

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:)

Tuesday, November 30, 2010

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!

Thursday, October 28, 2010

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!

Wednesday, August 25, 2010

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!)

Tuesday, August 10, 2010

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!

Monday, August 9, 2010

First Day of First Grade!

Today was Elena's first day of first grade. She was more than excited to start up homeschool again this year. I gave her the choice to start today or next Monday. She insisted we start today!
I have posted a video of Elena leaving for school. Also, there are a few pictures and a video of our super hero cape dance party that followed dinner. Always crazy fun around here!

Tomorrow Elena has her CF Dr. visit. We are excited to let Dr. McKean know that Elena now weighs 53 POUNDS!!!!!! Her weight has shot up a ton this summer. We are all so thrilled that weight has been less of a problem for Elena this year. Having the extra weight will help keep her lungs healthy. Strange? Yes, I know. But when the rest of her body is healthy, her lungs do not have to work so hard to fight off infections.

We are also anxious to see what else we can do for Elena's recent cold that won't leave. I will post after her appointment tomorrow night.

Tuesday, June 8, 2010

The Graduate

After a fun filled year full of learning, fun, field trips, help from family and friends...Elena has graduated from Kindergarten! Way to go big girl!
We are excited about homeschooling again next year!

Wednesday, May 12, 2010

45 Pounds = Six Flags

Elena had her CF appt today. She weighs 49 pounds!!!!!!!!!!!! Thank you CHEESEBURGERS! All looks well with the exception of one spot in her lungs. We are going to treat this spot with extra meds and a little more chest therapy (the Vest)to get rid of the wheeze she is having. Also, she had a vomit night 2 nights ago, but seems to be fine. It was more than likely a CF complication from excess mucus in her tummy making her feel oozy.

SOOOO...on to the fun stuff!

Six Flags in Elena's Words

When did I go?
On Friday May 7th, 2010 Six Flags was only open for Homeschool kids. It was VERY hot. There was a water mister that cooled you off. (Mommy and Dr. McKean nicknamed this the Pseudomonis Maker). I went when I weighed 45 pounds.

Why did I go?
I went because I FINALLY weighed 45 pounds. I wanted to go on a roller coaster. I like the Willie Coyote roller coaster. I also went because Mommy drove me, Will, and Aunt Jennifer.

Who went with me?
I went with my Aunt Jennifer, Cousin Will, and Mommy. I wanted Mommy to with me because the next day it was Mother’s Day and I wanted that to be a big activity to do before Mother’s Day with my Mommy. I don’t really know what to say about Aunt Jennifer. Sometimes I like her to come because I like to ask her when I can come to her house to play Barbies. But mostly I like to be around her because she looks like my favorite princess Snow White. I wanted to go with Will because I love him and I would like to sit next to him on some rides. What did I do?
I rode lots of rides. I rode the Scream Machine. I kind of liked it, but I really didn’t like it when my butt popped up off the seat. I only like the little small hills. I did NOT like the Georgia Cyclone. I didn’t like it because it was really really really fast and bumpy. I like the Monster Mansion. I did not like the scary part where a big monster with red eyes was pointing at you. Aunt Jenn didn’t like it either. I also didn’t like where they blew out hot air when a monster ate chili. I like the Hansen antique cars and the bumper cars. I like the antique cars because I got to drive it and it was easy.

What did I eat?
I ate a hamburger and some fries. Aunt Jenn bought me a frozen strawberry lemonade. It was yummy! On the way home, we got a Gummy snack from Bass Pro Shop. We stopped at Wendys before that for a yummy dinner. When we dropped Will and Aunt Jenn off at Bass Pro Shop, I took a little nap.

My favorite things!
My favorite ride was the Willie Coyote small roller coaster and the log jamboree. The Willie Coyote was my favorite because I leaned to the side for a really long time. I like leaning to the side but I don’t like upside downs. I like the log jamboree because it was a wet ride. I liked the small hills. I like fast small hills, but not fast big hills. I like the Monster Mansion because there was a duck farmer that had a hose and water was coming out from it for real. He sprayed us!

Did I have fun?
YES! I had fun because there were lots of rides that were fast and really fun. I had fun because I was with my Mommy, my cousin, and my Aunt. I like riding rides with them. I sat next to Will in the Monster Mansion. THAT was fun. I rode alone with Will on the Willie Coyote and that was the MOST fun; just me and Will.

Silly Sayings
• “Have a Six Flags Day!” was EVERY employee’s favorite saying.
• Humming, “Dum dum dum dum du, dum-da-dum” while doing a silly dance
• Can I get an “oh yea!” Everyone answers before EVERY ride.
• “Why do I look scared in this picture when I was having fun?” as Elena looks at one of the ride pictures.

Friday, March 26, 2010

Rosebuds Race!

Here is Elena's team of rosebuds...so cute! They raised over $9000 for Cystic Fibrosis research and helping needy CF families! Thanks for your help to make their team successful.
Here is part of committee for adult marathon team 65ROSES that came out to cheer on our little Rosebuds! These people have connections to CF and are AMAZING individuals that I am honored to know.
My friend Patti keeping me company at our sign in table.
The Grandpas with the Grandbabies....they love their job!
Our family after the race.
Ethan trained for the race, but when it came to race time, he refused to get out of Daddy's arms. SO cute!
Elena was VERY serious about her training, and very serious about her race. She had a giant smile on her face as she approached the finish line. THIS made Mommy so very proud!
Elena and her friend Cassidy show off their medals. A much deserved reward for these girls.

Way to go Rosebuds!

Thursday, March 11, 2010

10 days to $1000!!! Help me meet my goal!

Hello friends! I have been given a challenge. 10 days to $1000.00. I need your help! All I need is $235.00 more to meet my goal. Please consider donating $5, $10, $15...whatever you can. Every cent makes a difference. I am alive and well today b/c of dollars donated towards research.

We're taking part in the Rosebuds to raise money for Miles for Cystic Fibrosis- please make a donation by visiting our Firstgiving page: http://www.firstgiving.com/elenagoodrow

You can donate online with a credit card. All donations are secure and sent directly to Miles for Cystic Fibrosis by Firstgiving, who will email you a printable record of your donation.


Sunday, March 7, 2010

Cold that won't quite...or will it?

Elena was at a birthday party last weekend and was obviously uncomfortable. Daddy told her they needed to go home if she wasn't feeling well. Once they got in the Jeep, Elena screamed in pain the entire way home. She complained of her ears hurting. Visiting the Dr. revealed that Elena had a DOUBLE ear infection. Ouch.

There was still concern about her cough not getting the guck out of her lungs. However, she passed the PFT with flying colors. She was able to "blow out" all the candles on the computer test cake. That means that her lungs are still going strong.

She has started a new antibiotic and continues her longer breathing treatment routine in the morning and at night.

We feel we have so much to be thankful for as our daughter continues to de well despite her run of sickness this year.
Only two weekends away until Elena runs for the Rosebuds! She is so thrilled to feel like she is doing her part in finding a cure for her disease. Thank you to all who are supporting her with donations, prayers, and participation in the event!
March 20th! www.milesforcysticfibrosis.com /rosebuds

Friday, February 12, 2010

Good Reports times TWO

Elena had her regular scheduled CF visit today. She had a gleaming report from Dr. McKean. Elena has had a cold the last few days and we had some concerns that it was moving into her chest. However, her lungs were ALL clear! Even better news is that Elena weighs.....drum roll....FORTY-FIVE POUNDS!!!!!!!!!!! This has been a goal of Elena's for some time now. She actually weighed 45.8 at the office, but she was wearing her shoes, so she decided she needed to round down the weight b/c shoes are heavy. Yes, those were HER words.

Another good report can be viewed in this clip below. Elena has decided that she wants to be a ballet teacher by day and a "weather girl" by night. Here is our local weather girl, Elena doing Snow coverage in the Eastern Suburbs of Atlanta. VERY cute.

Wednesday, January 6, 2010

NEVER in her LIFE!!!!

Elena has been home from the hospital now for 2 1/2 weeks. Her final diagnosis was a staph infection in her lungs and pneomonia. As strange as this sounds, this was the BEST outcome for a person with CF.

After her follow up with Dr. McKean, we ran a few tests on her stool, as well as did another x-ray. The x-ray showed the spot of pneomonia ALL gone with no scarring left behind! Wa-hoo!

Even BETTER news is that Elena's stool tests showed that for the first time in her life she is absorbing 100% of the fat in her foods....I repeat...100 PERCENT! That is huge!

This means that all the med changes are truly working. We thought they were b/c she was tolerating things well and eating better than ever before. Now we know for sure. Such fabulous news!

Thanks to all for your prayers, phone calls, letters, donations towards Elena's Rosebuds team, and help around the house!

Happy New Year!

Want to see what my family is up to?