Sunday, February 05, 2006

All Is Well

It's been a while since I've last posted -- no news is good news! Bailey had an echo last week at Riley, and all remains well. Her PA pressure is not going down but not going up either, so the doctors are pleased. They say her left ventricle is functioning very well. So, continuing to dodge transplant. Life is good.

It was a year ago on January 28 that Bailey was admitted to the hospital and a year ago on the 31st that she had surgery to implant the Berlin Heart. Lots of memories floating around right now. The turn of the new year seemed, at the moment, to be a big breath of fresh air with a brand new year but as the end of January came and went, the flood of thoughts of a year ago emerged and . . . what a year it's been!

Bailey played her violin last night at a Kiwanis fundraiser for Riley. She did fabulous! but she was so nervous that she cried both before her performance and afterward. She felt better, though, when at the end of the show the president of the Riley Foundation asked her to join him again on stage and he said, "That was the most beautiful song I've ever heard in my life, and I'll tell you why." And he told them her story from last year. It was very touching, thoughtful and kind -- of course, I just sat there and cried. It was such a nice evening and it was such a pleasure and an honor to be a part of raising money for Riley - - it's such an incredible place. They have lots of things happening with the new wing/tower they're building. They announced for the first time to the public last night that they are going to have a delivery area for high-risk pregnancies to alleviate the need to transport the babies from another hospital to Riley. That's pretty incredible! What an amazing place it is.

The documentary is nearly finished, we hear. Haven't seen any of it, but we hear it's something special. Patrick Dempsey is narrating it, and, yes, he and Bailey have kept in contact. It's so funny to hear Bailey say, "Hey, I think I'll call Patrick tonight." They were talking about his appearance on the Golden Globes and how his tie was crooked. She's having fun. We're hoping to see him again in May when he comes out for the race.

School is going well, although she's looking forward to high school in the fall. She chose her first semester of classes last week and listed media and nursing as her areas of interest. That seems pretty fitting after this past year. Speaking of media, she's going to be interviewed live by WTHR this Wednesday at 12:50, so tune in to that if you can; and she's going to be on WFMS on Thursday helping Mimi with the Riley Radiothon from 4:00 to 6:00.

In the hopes that we might be able to do something more for raising money for Riley, Bailey and I have decided to try to put together a slide show program about last year. We're pretty excited about it, although we really have no idea where to start or how to get that done. But the experience last night at the Kiwanis fundraiser gave us the desire to do all we can and, having several months of rest and recoupment, we're ready . . . I think.

Well, happy Superbowl, everyone! I'm not a big fan of football, but looking forward to seeing some friends and watching the commercials. Ha!

Take care, and I'll talk to you soon.


Anonymous Linda Rose said...

What amazing people you and your family are.

Bailey is a special young lady. The Lord has something in mind for her. It is exciting that you share her life with us so we can watch and see what it is.

Riley is an amazing place, my daughter had to visit every 3 months for a kidney disease. She is 22 now and going to have a baby. She is considered High Risk, too bad that wing isn't open.

My grandson was born Jan.1st 2006, he went home for two days and then ended up in Riley for 7 days. They did a wonderful job with him and everything is going great!

God be with you and Bailey, you are both just amazing!

I will be giving to Riley again this year during the

7:26 AM  
Blogger E & H said...

Hello! I have only had my internet back for a week now and I check this site dailey. Every morning I woke up last year, I was on the computer before I could do anything. It is exciting that everythin ghas changed so much from a year ago when I first started following your story. I will be donating to Riley, I will call tomorrow first thing!!

Bailey, I hope everything works out for you and you let us know every now and then how you and your family are doing. Everytime I am in Shelbyville (weekends) I think about you, and your courage.

That is amazing news about Riley and the high risk wing. I am glad that they are able to provide us with such service. We will look for you on tv and listen to you on the radio tomorrow. Good luck!!

4:53 PM  
Blogger Annette44 said...

Angie - it's been ages since I've been on this site! I hadn't seen this latest post, even if I am a bit late reading it!

I didn't know Bailey plays the violin - that's fabulous! What's even more wonderful is that she certainly is giving back to Riley after her experience there. I can't believe it's a bit over a year - last year at this time we were reading Bailey's Blog every day. I know you pray every day that she doesn't have to go back. Every time Matthew gets sick I worry - I know how you feel.

I miss you guys and am glad I can catch up with your family by reading this blog. Tell Bailey I'm thinking of her. I wish you all the best!!!!

Annette :)

7:34 PM  

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