Wednesday, November 29, 2006

CD for sale in Fort Wayne

Hi everybody!

The CD I was telling you about that Bailey and Ann, the music therapist at Riley, recorded a song for is now on sale by radio station WAJI 95.1 FM in Fort Wayne. It's $10 and all proceeds go to Riley. It's really a neat CD with songs from recording artists like Gin Blossoms, Nick Lachey, Jars of Clay, Smash Mouth, Ryan Cabrera, and others. Bailey and Ann's song is tacked on to the end. Perfect stocking stuffers!

You can buy on-line at

Happy Holidays everyone!


Sunday, November 19, 2006

Bailey's quilt for Berlin Heart.

Saturday, November 18, 2006

Hi everyone! It's been a while, but I thought we might know something about the documentary airing before I posted another entry, but I don't. To my knowledge, ABC hasn't decided when (or maybe even if?) they're going to show it. The Speedway guys are working hard on pursuing other avenues to get this story out there. It's not a story about Bailey in itself, it's about getting a VAD for kids over here in the U.S. readily available for use at a moment's notice, whether that means developing one here in the U.S. or getting the Berlin Heart approved by the FDA. This really is more of an urgent matter than some may thing. Unfortunately, kids are being put on the adult-sized VAD because they are so sick that they cannot wait for the FDA to approve getting the Berlin over here. Because these VAD's aren't made to fit children's bodies, the risks of clotting, infection, and machine malfunction increase. I can't help but believe that a machine made for a child's body will give these children a much better shot at survival. I can't imagine how frustrating it must be for the doctors whose hands are tied by knowing the proper machine exists but they can't get to it when needed on an emergency basis. I just thank God every day that Bailey's situation was such that Dr. T had plenty of time to get Bailey's Berlin approved and shipped over here and ready for her day of surgery. So, we're ready for the documentary to get the word out there that this is obviously a problem. It's a strange thought . . . that the U.S. hospitals don't have the equipment readily available that they KNOW exists.

So, bottom line is, we still don't know when it might be airing, but I will definitely let you know by posting it here as soon as I know. Hopefully soon.

We've had a great fall. I was able to take fall break off with the girls, and we went to a pumpkin patch in southern Indiana. Such a fun time. The trees were beautiful. The girls are all doing incredibly well in school. Marissa LOVES to read - she's in 1st grade. Josie is making straight A's with hardly any effort. And Bailey is right up there with A's and B's. I'm extremely proud of them all! We've had an addition to our family . . . a cockatiel. He was Josie's birthday present. She named him Mickey. He's a very sweet bird and she takes very good care of him. He's not been any trouble at all . . . except for the time he broke a blood feather when he fell off his perch (hey, he's still young and still learning . . . how to perch, I guess :) ) and bled all over his playground and his cage. He had blood all over his face and his wings. Looked pretty disgusting, actually. We had to drive him to the north side to have the feather removed so it would quit bleeding. Actually, it was kind of funny . . . after the fact, of course. Bailey and I took him before Josie got home from school (both, because we thought Josie might be frantically worried, which she tends to do, and because I didn't think we could wait any longer - he had lost quite a bit of blood already). So, Bailey and I were being brave and passed him over to the shop guy who gently grabbed him, turned him over (which he did not like very well), and simply took tweezers and pulled the feather out. I actually got lightheaded and queazy! And Bailey said, "Take what you feel times 3 and that's how I feel!" So, we hung around the shop visiting the other birds while we made sure it had stopped bleeding, got him a toy, and went back home. All is well.

Bailey and I leave for Berlin in 3 weeks! Now that it's getting close, we're getting wimpy and scared. Just the thought of traveling internationally - just me and Bailey finding our way through airports AND a foreign language on top of that - is kind of intimidating. But this trip is going to be unforgettable. We're working on a quilt to take over there with us and present to them. It's REALLY neat - full of lots of color. I'll be sure and take a picture of it and post it before we leave so you can enjoy it too. Bailey did all the quilting herself. I helped with piecing and the binding. I think they'll really like it. We're hoping they'll hang it up somewhere so they can be reminded of the great things they're doing over there for kids all over the world. We can't wait. Planning on doing some Christmas shopping too. We're leaving on Dec. 11th and returning on the 15th. I'll be sure and let you know all about our trip!

Bailey has been chosen as the 2007 Indiana Champion for the Children's Miracle Network. We knew about it a few months ago, but couldn't say anything because it wasn't official yet. So, I hope it's official now because I just let everyone know. They choose 1 child from every state and they send them and their family on a trip to D.C. and then to Disney World where they do lots of things for CMN like interviews, photo shoots, and I'm not sure what else. Last year's group got to meet the President. In Disney World, I hear it's a huge red-carpet celebration with lots of celebrities. It should be LOTS of fun! The girls are so excited. Bailey hasn't flown for a really long time, and Josie and Marissa have never flown. They're all a little nervous but very excited at the same time. We've never been to Disney World either. This trip is happening on spring break. We've never taken a trip on spring break before either, so there are all sorts of "firsts" in there for us. This is a great opportunity for Bailey to share her story and to really get the word out there about how wonderful Riley is and how they're doing incredibly great things there. What an honor it is for us to be able to represent Riley and Indiana. How awesome is that?!

Bailey got to record a song on her violin while her music therapist from Riley sang and played her guitar. They recorded it at WFMS for a Fort Wayne radio station that is putting together a CD to raise money for Riley. They asked Ann, the music therapist to do the song with a patient, and she chose Bailey. It's very cute! When I hear anything about the CD like when it comes out and where we might be able to get a copy, I'll let you know.

Bailey is also on the cover and featured in this next Riley Messenger. Such beautiful pictures of her and they did a great job on the article. It's very, very good. If you don't get it in your mailbox, you might try to track one down somewhere. I know they have them sitting out at Riley for people to pick up, but not sure where else they might have them. The Foundation invited us to their Annual Luncheon at the Convention Center this past week where they showed a 3-minute version of the documentary and then Ann Rider interviewed Bailey, Scott and me. It was a LOT of fun and a great time of celebration. There were so many wonderfully caring people there, that we weren't even really scared to go up on stage, even in front of all 700 people! (Now that I think about it, I'm starting to shake. Ha!) Bailey helped present an award to Tony George for his and Laura's support of the documentary. The award was a framed piece of artwork that Bailey created (you can see a picture below) just for the award. It was beautiful! She did a great job, and the Foundation did a great job creating and framing the award. Tony was very grateful to receive it and gave Bailey a big hug. He's such a nice guy, and loved the award. We had a lot of fun.

Enjoy the pictures below!

Love you all,

The Thunderbirds at the Mt. Comfort Air Show.

Bailey and Paisley befor the homecoming dance.

My sisters and Mom and Dad at their 50th Wedding Anniversary.

My little horse, cow and pig better known as Bailey, Josie and Marissa.

Fall break at the pumpkin patch.

Ann and Bailey in the recording studio at WFMS.

Halloween - a Christmas elf, a zombie, and a Spanish dancer.

Bailey at the cotton candy machine during the Dance Marathon at I.U. that benefits Riley.

Our newest addition to the family, Mickey.

Bailey's artwork created for Tony and Laura George.