Monday, April 30, 2007

Still at the Hospital

The cardioversion procedure went well yesterday, but minutes before we were to be discharged (around 3pm), they saw that her pacemaker was doing some things that it's not supposed to be doing. The monitor showed it was "spiking on the T wave". Don't pretend to know what that means - even though they did explain it to me twice. Basically, her pacemaker needs some settings adjusted and, if we went home, she was at risk for some arrythmia stuff, so they decided to keep her here, especially since we were coming in today (Mon.) anyway for some tests on her coronary artery flow. They saw something Thurs. that Dr. D wants to take a closer look at.

The night went ok - Bailey got sick in the middle of the night and feels sick again now. Don't know if it's anesthesia stuff from yesterday, or heart stuff, or what.

So, I'm going back to be with her in her room. Just wanted to give an update.

Have a great day everyone - I hear it's beautiful out there!

Sunday, April 29, 2007

Yet another cardioversion

My last entry was titled "Another Cardioversion", and that's what I had planned on for this entry, but I thought you guys might think it was the same ol' entry, so I switched it up a little. Ha!

So, we went to the screening of the documentary yesterday at the Indianapolis Film Festival at Herron Art School on the campus of IUPUI -- just blocks from where we now sit -- and we climbed into the van afterwards to head out and Bailey says, with tears, "Mom, my heart's jumping around." Ok, well, let's wait a little bit and see if it settles down. A few minutes later, with more tears, "I'm getting so tired of this, Mom."

After 5 cardioversions in the last 6 months, of which all but 1 have occurred since December, it's kind of getting . . . not frustrating, because that's such a negative connotation . . . more of a nuisance, maybe, but that's sounds more worry-free than it really is . . . I don't know. She's continuing her swelling in her belly, so the big belly and approx-monthly cardioversions are kind of getting her down emotionally a little. And I think that's kind of getting her down physically a little. She's just not been feeling good.

But Dr. D is working hard to try to figure this all out. He told her she was confusing the heck out of his brain. As Bailey has always been, she just continues to be out there in the forefront of medicine -- they haven't seen too many cases like this, if any, so we're all learning as we go. Patience is a virtue.

We met Scott in the E.R. this morning to get registered, and he says, "You know, some families spend a lot of time at soccer games, basketball games, and things like that . . . we just spend our family time at cardioversions." That's pretty much what it's like. Ha!

Well, anyway, she's scheduled for a cardioversion some time this afternoon. I'll check in later and let you know how everything went -- prayerfully no hitches.

Talk to you later,

Sunday, April 15, 2007

Another Cardioversion

Bailey called me at work when she got home from school Friday, like she normally does, but this time she didn't sound as perky as she normally is. She right away said, "I've been dizzy and short of breath all day, Mom. I feel like I'm gonna pass out." I had her take her blood pressure and it was pretty low - 70's/40's - and her heart rate was a little high - high 90's. Her pacemaker is set at 80 beats per minute. I actually opened my mouth to ask her if her heart was in rhythm, but I didn't because I knew she would have told me since she's been able to tell right away recently. Also, she hasn't felt dizzy and out of breath with an irregular heartbeat. So, we called the doctors and went in to have Dr. D tell us she was out of rhythm. Bummer! We didn't expect that. Bailey said, "What?! But I didn't do anything!" Dr. D said, "Exactly! You didn't do anything. It's not your fault that your heart falls out of rhythm." So, they admitted her overnight on a heprin drip (to thin her blood to avoid blood clots since the irregular heartbeat causes irregular blood flow) and they cardioverted her yesterday (Saturday) afternoon. Everything went well, and we were home by 7:00pm.

I still get nervous. We've done this cardioversion routine now 5 or 6 times. I expect it to get emotionally easier each time, but that hasn't happened yet. It hasn't gotten easier at all. I tell myself we've been through this several times, now EXACTLY what to expect, but . . . the future is so uncertain. Anything can happen at any time with any of us. That seems kind of negative, but I don't mean it like that, really. All that causes me to do is to heavily rely on God and know that, no matter what happens, we're taken care of. Life can be a pretty wild ride sometimes. I think the best place we can be with our faith is to know we have no control and God is fully in control, but I also think that place also leads to knowing how unstable like can be. And that can bring on a certain amount of fear. Then I find that fear causes me to rely completely on God . . . and the circle continues. Ha!

But everything's good. The sun in shining - even though it's very cold and my spring plants aren't doing the best. It was snowing yesterday when we were in the hospital. I'm ready for some warm spring days.

Have a great rest of the weekend, everybody!

Talk to you soon.

Tuesday, April 10, 2007

Indianapolis Film Festival

Hey guys! The documentary (Heart to Heart) is being shown at the Indianapolis Film Festival at the end of this month. Learn more at this website:

Saturday, April 07, 2007

A Trip of a Lifetime!!

What an incredible trip. The Children's Miracle Network really knows how to make you feel special! We arrived in D.C. and were picked up by a Lincoln Town Car to our hotel 2 blocks from the White House - about 45 minutes away. Our first night we met at ESPN Zone where we had a private dinner and welcoming party. Miss America and Richie McDonald (from Lonestar, for all you non-country music people out there) were there hanging out with us and they both sang for us in a private concert. Then all the kids (including siblings) were given game cards to play unlimited arcade games. Such fun! Then, in the next couple days, each Champion kid gave a radio or TV interview to their local stations (via satellite) back home. Bailey was interviewed with Miss America by Fox 59 News - did you happen to see it? We rode to the TV/radio station with Richie McDonald - it's so fun to just hang out with him like a regular person. He said he was going to Disney World with us too. And so is Miss America. Hanging out with Richie McDonald and Miss America. Wow! But I think they were thinking the same thing - "hanging out with CMN kids - Wow!". Ha! They were so sweet and genuinely happy to be there with us.

They, to meet Senator Lugar during lunch at the Senate Building (and most other Senators came to meet their respective states' Champion), then hopping over to the White House to meet the President. Wow! Now, THAT's a once-in-a-lifetime moment. He was so nice and funny. He thanked the kids for their courage and representing all the other kids being treated by children's hospitals, and then turned to the families and thanked us for our courage. It was quite a special moment.

Then we got some free time, so the girls and I walked around to some monuments and the cherry blossoms. Wow! Was that a beautiful sight! I kept having flashbacks to when we lived at the hospital for 6 months - coming home in the spring and seeing the blossoms suddenly in full bloom in the spring time. Just beautiful. Rode a paddle boat in the Tidal Basin between the Washington Monument and the Jefferson Memorial. So peaceful and beautiful with all the cherry trees. Tried to get in to see the Holocaust Museum (Bailey's top pick), but the line was too long, unfortunately, so we just picked up some books and a DVD at the gift shop. Bailey was bummed, but didn't really want to wait that long either. She got pretty tired walking around D.C. - we had to stop and rest a few times. Found a T-shirt shack next to a snack shack - what could be a better place to rest?!

Buses picked us up Saturday early afternoon to venture on to Orlando. My gosh! Saturday was the first official day of the Cherry Blossom Festival in D.C., and BOY!!! did the people come out of no where! Suddenly it took forever to get anywhere on the elevators. Millions of people everywhere. We were glad to leave when we did. The buses took us right up to our humongous plane on the tarmac (sp?) of the Dulles Airport. They had security tables set up for us, and then we got to meet the caption, co-caption and all of the crew, who were all wearing CMN T-shirts that said "I Love Kids". It was so fun! Again, we felt special. Had dinner on the plane, and landed in Orlando that evening at sunset. Again, the buses picked us up right from the plane - didn't have to step foot in the airport. The rescue trucks were there, and they helped carry the kids in wheelchairs down the steps. That was an emotional time, watching them carry Josh and Andrew (Bailey's new friends - both spinal cord injuries) down the stairs.

Then we were greeted at Coronado Springs Hotel by cheering CMN volunteers - they had balloons everywhere, snacks, drinks, and pinatas filled with candy for the kids in one of the courtyards. Such a fun arrival. The hotel was absolutely gorgeous with all the tropical flowers, the lake, the pools . . . just gorgeous. Got to spend 3 days at the parks - but we only made it to Epcot (twice) and Magic Kingdom. There's just too much to cover in 3 days - you need to be there for about 10 days straight to catch everything - Disney World is HUGE!! Had a few nights of celebration -- Air Supply gave us a concert. Met Marie Osmond and John Schneider (Dukes of Hazzard) at breakfast one morning and learned that they are the ones who started CMN 25 years ago. The kids got their autographs and pictures taken with them. Such nice, warm people. They LOVE kids.

Bailey's birthday was Tuesday, and her friends got together and got her a Disney birthday hat. So sweet! They also got some postcards and had all the Champion kids sign them when Bailey wasn't looking. Such a wonderful surprise! Josh ran into Tracy Byrd (another country music star) at one of the parks and had him sign her card too. The kids were the best kids in the world. And it was a highlight of my trip to get to meet the families. The parents and the siblings too. Even though our kids have all sorts of different disabilities and medical conditions, we've all been through the same experiences, and have the same priorities in life. Such good people. Didn't see any of the kids disrespect their parents all week. And I let Bailey run around with her friends at the hotel well into the night. Something I would NEVER do here at home, but these kids and their families were completely trustworthy. We all wanted to form our own little colony and move in together. It was such a warm and loving feeling to be surrounded by these families - none of the kids judged each other and none felt left out. They immediately bonded with each other. Something that is pretty difficult to achieve back home where they are constantly stared at and left alone where it can get pretty lonely. These kids formed lifelong relationships. Bailey and her new girlfriends cried the night before we left. They didn't want to leave. And Josie even mentioned several times that she didn't want to go back home to school where all the kids were mean. She and Marissa made friends on this trip too. Thank goodness for cell phones and the internet. Bailey got all her friends cell phone numbers and email addresses. We weren't even home 2 hours and she had already talked to 3 of her new friends. It such a sad thought that she might not get to see her new friends anytime soon. But they can definitely keep in touch. One of her new friends is expected to get a heart transplant sometime in the not-too-distant future. We had a special bond with him and his family.

And we formed a special bond with the Champion from Iowa, Matt, and his family. He was in a farm accident 19 months ago and lost his left arm. You ask him about it, and he talks about it like it's no big deal. He plays 1st base on his baseball team. Such an incredible family.

Josh, a spinal cord injury victim, used to be a gymnast aspiring for the Olympics. And Bailey used to be a gymnast before her Berlin - so they had some things in common. Josh (from Minnesota) is an incredible kid - he plays basketball (and lots of other sports) and even downhill skis. He's still aspiring to make it to the Olympics.

Monica, a special friend of Bailey's, is receiving continuous chemotherapy to fight cancer. She was pretty weak and didn't feel too good on the trip. She's such a sweet person an a beautiful girl - even with very little hair.

Charley has had some strokes and has limited movement on her left side. We got to hang out with her mom and grandparents quite a bit - such a wonderful family.

Logan, a heart patient, was born with a heart defect and is likely to receive a heart transplant in the near future. He's a little guy - in 8th grade, but you'd guess maybe 5th or 6th grade by his size. He's had a pacemaker for several years and was getting mad that his pacemaker wasn't making any of the metal detectors go off. Ha! When we went through security at the White House, Bailey told them she had a pacemaker. They said she was more than welcomed to walk around the metal detector but that it wouldn't hurt her at all to go through it because the Vice President walks through it several times a day. Ha!

It's really hard to come back home to all the selfishness and criticalness and disrespect in the world. I know that sounds negative, but we didn't experience any of that these last 10 days. I believe that that is the closest experience to Heaven that exists here on earth. We loved it!

Sorry, I'm talking way too long here. Oh well.

We had a pin exchange where all the sponsors for CMN walked around to all the kids getting their signatures in their Book of Champions and gave them pins from their business/organization. That was such fun! Those people were genuine excited and honored to meet the kids.

We had the final night of celebration which was a concert by the Jonas Brothers (a young group of 3 brothers). Then they had a medal ceremony. They introduced each child by state and they walked up on stage to receive a medal by Miss American or Richie McDonald. That was a tear-jerker. Tom and I cried throughout the entire ceremony. To see Bailey's friends up there and receive their medals with such pride. And all the little kids and the kids who had difficulty walking . . . wow! it was had to keep from sobbing like a baby. I was so proud to be a part of these kids' lives. Such a special night. Then that was followed by Miracle Idol - a spin-off of American Idol where the finalists (CMN reps, radio reps, and even Champion kids) sang for us and we got to pick the winner. The winner was one of the Champion kids, Austin DeGroot (from Wisconsin). We walked around Epcot for a while with him and his family. Such nice people (he fought cancer, has a sister with heart disease, and has another sister with cervical cancer. I can't imagine.) He was incredible!

And some of our friends with the Riley Foundation met us down there for Bailey's birthday breakfast. They gave her a box of gifts, and gave Josie and Marissa boxes of gifts too! Such special people. We also got to meet the radio station from Fort Wayne that has Bailey's song on it (where she recorded a song playing her violin with the music therapist at Riley). They want her to help out at their radiothon for Riley in the fall. That will be fun!

And, we're back home. I could talk about that trip for days. We are so honored that the Riley Foundation chose Bailey for this trip. It's just one more thing that we feel we can never even begin to repay Riley for. Thank you is not near enough, but it's all we have at the moment.

Thank you, Riley!!

Have a good Easter everyone! Enjoy the pictures.


Pictures of D.C.

Waiting for our plane at Indy airport - Rissy and Josie's first flight. They were very brave!

Bailey's new friend, Monica.

The hotel in D.C. decked out in welcoming CMN!

Miss America sings for the kids - note Bailey's name in lights (to the left).

Our little buddy, Drew (Michigan), with Miss America.

Richie McDonald (lead singer of Lonestar) sings for the Champions at ESPN Zone. He sang 3 songs, one of which was called "Hey God", a "thank you" to God for his strength. An incredible song that really hit home.

The Champions in front of the Capitol Building.

The other half of the Champions.

Senator Lugar takes time out of his busy schedule to meet Bailey (at the Senate building) - such a nice man!

. . . and more pictures . . .

The White House! (the bouquets were real! and absolutely gorgeous!)

The Champions meet the President!

I took tons of cherry blossom pictures - here are just a few.

At the base of the Jefferson Memorial.

My little punk.

Jefferson Monument taken from the Tidal Basin. Pretty impressive.

Josie carefully decides where to steer us next.

The Washington Monument taken from the paddle boats on the Tidal Basin.

My sweet little chicks.
Ok. So I got caught cheating on my diet.

Now to Orlando

Greeted by the Delta crew taking us to Orlando.

We land in Orlando - Josh gets some help down the ladder.

Group picture with the Delta crew.

A reception of cheering supporters, greets us upon arrival to our Disney World hotel. We felt like celebrities!

Rissy signs Mickey's autograph book.

Rissy and her new friend, Lexi, (Logan's sister) from Maine.

Bailey and her friends at the pool.

. . . more pictures . . .

Bailey's friends present Bailey with a birthday hat.

Our friend, Matt, from Iowa, and his family.

Bailey meets THE founder of the Guardian Angels in New York.

Bailey meets a Royal Mounted Canadian Police.

Bailey's friend, Charley, and her family.

Bailey and Riss share a seat and sip frozen Cokes.

Bailey, Josie and Riss by the castle. Oh! and Pooh.

Main Street in Magic Kingdom - the spring break crowd was massive.

The girls show off their Disney pins. They worked hard trading for just the right ones.

Josie carries the weight of the world!

. . . and more pictures.

Josie shoots down the water slide.

Bailey hangs with her friends (L-R: Charley, Alyssa, Logan and Josh).

Josie and Bailey and some friends, with the Jonas Brothers (top row).

Bailey's friend, Monica, gets her medal.

And then she stands. I held it together pretty good until then . . . well, no I didn't. I cried during the entire medal ceremony, but seeing Monica stand made me lose it.

Our wonderful friends from Wal-Mart who raise LOTS of money for CMN. "Munch" (white shirt) became Bailey's buddy - they share the same birthday!
Ben, the Champion kid from Georgia, sings for one of the other Champion kids, Justin, who didn't believe Ben was going to sing on stage that night.

Our buddy, Austin DeGroot (Wisconsin), wins Miracle Idol!

A Jonas brother sings to the girls (see Bailey?).

Mark Wills (another country music singer) sings for us.

Richie McDonald sings with Danielle.