Tuesday, September 26, 2006

More Good News

We had an echo today with Dr. Darragh. All went very well. We had a talk about how things look overall and he said Bailey's heart function is great, and her PA pressures are good and continuing to go down and will likely continue to go down very slowly over the next years as her heart re-adjusts itself. He said the only issue her heart has is her tendency to fall out of rhythm. If that continues on a regular basis, he might consider a pacemaker to keep that under control but we don't expect anything to happen with that anytime soon. I then had to ask him the question I've kept in the back of my head this past year - "So, what are your thoughts on the possibility of a transplant now?" He said, of course, that we don't know what will happen in the future, but he doesn't expect to have to talk to us about a transplant before he retires. My first reaction was a squeal, but I had to ask him if he planned on retiring anytime soon. Ha! He said since his kids are in school, he expects to be there for another decade at least. So, back to squealing! Isn't that incredible?! We're so happy. Bailey and I hi-5'd each other. The possibility of a pacemaker compared to the possibility of a transplant - there really is no comparison. We have been blessed more than we could have imagined. We are still giddy over life. Every day is happy and the every-day stresses have dwindled away. There really are no every-day stresses when we've survived what we've survived the past 14 years. God is good, isn't he?

I think it's OK for me to share this information, but I got a call from the CEO of Berlin Heart in Germany last week and he invited me and Bailey to come over in December to help them celebrate their 10th year anniversary. No P.R., no press, nothing like that - as a gift to their employees, they just want them to be able to meet Bailey. Is that incredible, or what?! An unbelievable opportunity. We immediately checked with her doctors to see if Bailey could physically and medically make the trip, and they gave the OK. Then, later, we found out that the Berlin guys had already checked with the doctors before they even invited us - they didn't want to raise our hopes only to have them dashed if the doctors wouldn't let her go. That was very considerate of them - they seem like such sweet and caring people. We absolutely can't wait to meet them face-to-face -- all 150 of them! They're getting us a hotel in Berlin for 5 or 6 days and one of those days, when they close the business for their anniversary celebration, they're taking us along with them to Christmas Market in Dresden (I think is the name), south of Berlin. They say we don't know what that is, but it's a big deal over there. Google it, you guys! It's beautiful! So, we'll be doing some Christmas shopping! Unfortunately, neither Tom or the girls get to go with us -- we'll miss them horribly -- but it will nonetheless be an incredible journey for us. I just really can't express how excited we are for this trip. I'll be sure and post lots of pictures upon our return.

In the meantime, still don't know about when the documentary will air on ABC. But will let you know as soon as we do!

Hope all is well out there. I have to get Josie to a skating party.
Love to all!

Saturday, September 16, 2006

The Documentary Premier!!

It's finally here! The documentary premiered at IMAX Theater Thursday night. What an incredible evening of celebration . . . and celebrate, we did. It felt so good to not only reveal the film to the world, but I felt personally like I finally had an opportune moment to celebrate Bailey keeping her own heart. That might sound strange, since Dr. T and Dr. Darragh announced that to us about 14 months ago, but our excitement had a pretty tight cap on it due to the impending open-heart surgery a week later and then recovery and then seeing if her heart would continue to do well on its own. So, all that has taken about a year to get through and . . . here we are! Don't get me wrong, I still have a guarded optimism that Bailey will never need a transplant, but we just learned a monumentous lesson last year about how nothing is in our control, didn't we?! So, I try not to rely too heavily on the future, but really celebrate each and every moment of every day. I tell ya, there hasn't been too many bad days at all (if any, really) in this last year. I am so happy to have Bailey with us; I am so happy to have our family together; and I am completely thrilled that we are all healthy and can enjoy life. We are truly blessed, and my gratefulness does not slowly erode away as the days pass, but continues to grow on a daily basis. I was so afraid after we came home from the hospital that I would lose sight of what we went through, but I am happy to report that has not happened. I think about Riley Hospital every single day. I think about all our friends we gained and our life during those 6 months at the hospital where we were cared for and loved by each and every medical team member that walked in Bailey's room. I will never forget. And now, through the documentary, I will continue to speak out about how special that place is and how many children's lives are touched by their caring and incredible medical expertise. We owe our life as we know it today to them. I know they have bad days there at the hospital. There are lots of sad stories there. And it breaks my heart to think that they do have bad days, but I know they do. I just hope it will help them make it through those days by thinking about Bailey and her successful treatment and how much they mean to us. The impact they have on the lives that they touch hopefully far outweighs the children who they can't help. That is my prayer.

Well, I didn't mean to get off on that tangent . . . I meant to report on the premier night. What an evening. It was like a reunion, too, of "Bailey's Team", and a lot of them brought their family members who we finally got to meet. Such wonderful people. Everyone who attended was happy to see us even before the premier, but afterwards . . . oh my gosh. There were hugs, tears, smiles, and kisses flying all over the place! Everyone was so happy to see how much better Bailey looks now than in the documentary - especially in the beginning of it when she is very, very sick. In fact, Bailey still doesn't like to watch the first half of it because she doesn't look so well. I can't wait for you all to see it - they're still waiting to hear from ABC about when and where they want to air it. I'll be sure and keep you posted.

Our Speedway buddies were there -- Brian, Steve and Buddy -- and even Tony and Laura George came. Such very nice people wanting to do great things for kids. I was so proud to be in the same room with them all. Toby Myers, the guy who wrote the music for the film, came with his wife. He was such a joy to talk to. He acted star-struck to meet us. He said he watched the documentary about 50 times before he put music to it and to hear our voices in person was just so exciting for him. He was so happy to be there. He said the documentary was a life-changing event for him. And to think he's never done anything like that before - he did an incredible job. The music is amazing!

Patrick couldn't be there - he emailed us that morning and said how sorry he was that he couldn't make it but he was in N.Y. promoting Grey's Anatomy. I know he was thinking about us! Boy, was his name flying around the room that night! I think everyone enjoyed seeing Bailey's and Dr. T's relationship shine that night too. Bailey kept picking on him - like flicking him in the back of the head - and then he would put a choke-hold on her (yes, see the picture below!).

We got to meet so many wonderful people who want to help get the message out about pediatric medine and how it trails behind adult medicine. It really is an incredible message. It's not just about the Berlin Heart, but about how medical equipment manufacturers are putting their efforts and finances into producing adult products because that's where their profit is. Pediatric equipment isn't considered because they wouldn't make enough profit. That's a very sad thing to think about, isn't it? Adults - most of whom have abused their bodies for years - get the top-of-the-line medical devices, but newborns, toddlers, and small children get the short end of the stick because there's not enough of them who need it to make it profitable for giant corporations. But there ARE kids who need the equipment and there ARE kids who are dying because the equipment is not available to them. Hm.

There were two representatives from Berlin Heart there Thursday night. What an honor to be in their presence! They presented Bailey with a beautiful bouquet of gorgeous flowers and (and this in the only time that night that I cried), they presented her with a framed photograph of the Berlin Heart team in Germany and each of them signed it! The only thing that could have been better was being able to give each of them a hug. At least we got to hug two of them! You should see this, you guys! I have a picture of it below, but it just doesn't do it justice. I just sit and run my finger over each of their names. Some of them I can read, some of them I can't. Some of them are names I've heard of, some of them aren't. It's just incredible. The message on the plaque says: "Berlin Heart cordially wishes Bailey Hunsberger and her family all the best for the future." Even the message is incredible. They played the documentary for the Berlin Heart company and its employees about a month ago. They said the room fell completely silent after it was over. I guess it really touched each of them because they don't normally get to see the faces of those whose lives are affected by their work. What an incredible gift that must have been for them. I'm so glad to have been a part of the message of gratitude that reached their hearts half-way around the world. Wow!

Well, we had an incredible time at the premier. Bailey mingled through the crowd like a proper little lady. I was very impressed with her ability to socialize - ok, she did act like a child around Dr. T but, then again, so did he. Hopefully this film will do great things for the world of pediatric medicine. If this message can get out and someone does something about it, wow! To think that we might have had something to do with it . . . that's just bigger than I can imagine right now, but it just might happen! I can't wait to see where it goes.

Enjoy the pictures! Have a wonderful evening!


Friday, September 15, 2006

Some Premier Pics

Bailey with our Berlin Heart buddies.

Bailey and Dr. Farrell

Toby Myers and Bailey

Bailey with our Speedway buddy, Steve

Dr. T's gift from Berlin Heart - how cool!

Josie, Bailey, Marissa and me

Our Speedway buddy, Brian Gordon, me, and the 3 most beautiful girls I've ever seen!

More Premier Pics

The message on Dr. T's gift. Pretty cool, huh?!

Tony and Laura George with Bailey.

Two gentlemen from Berlin Heart, Bailey, and Dr. T -- ALL smiles ALL night long!

This REALLY isn't the choke hold that it appears to be - they love each other!

An incredible gift to Bailey from the Berlin Heart team from Germany - they all signed it too!

A couple of wonderful friends and incredible doctors -- Dr. Cox, Bailey and Dr. Farrell

An exhausting night for Rissy!