Sunday, May 11, 2008

No News is Good News

As I have always said, no news is good news. It's been quite a while since I've written - over a month. We have been enjoying every minute of every day. Bailey continues to feel really good . . . and the fluid still hasn't returned. She hasn't had any gallbladder pain in weeks - we're hoping the med to dissolve the stone is working! We continue to cook with lots of fresh foods to continue her low-sodium diet. Have you seen Frito-Lay's "Pinch-of-salt" chips in the chip aisle? They have potato chips, corn chips and tortilla chips. They are very good - actually, I think they taste the same. In fact, I overheard Bailey and Rissy talking this afternoon in the kitchen as they were getting a snack. They were getting into the Pinch-of-Salt corn chips and Rissy said, "These are low-sodium?!" as she was munching away.

I've had a very good mother's day. We spent the morning and part of the afternoon at the track for Riley Family Day. Yes, it was raining . . . a lot . . . and they ended up closing the track and the garages early, but it was still fun. John Andretti stopped in to say hello and sign autographs - the kids really enjoyed seeing him. He's such a nice guy. And Tom and the girls gave me a new digital camera for mother's day. My previous camera was in the bottom of a bag that I accidentally dropped on the floor and it popped and now rattles when it's turned on. Knowing it was on its last leg, I now have a new one that's even better than my old one and it's just in time for our trip.

I haven't written about our upcoming trip until now because I wasn't sure if we'd get to even go. The Make-a-Wish Foundation is granting Bailey a trip to Hawaii next month. We've had the plane and hotel reservations for nearly a year, but you know how sick Bailey was last year - we really put it completely out of our minds. But about 2 months ago, it dawned on us that we just might be able to make the trip! When we booked the trip, we were thinking we couldn't really walk the bamboo trails that we've read about because Bailey would likely be in a wheelchair, and we probably wouldn't be able to go to the top of the mountain to see the big crater on Maui because of the pressure change, etc. But now! We get to do all those things! And Bailey and Josie and I are even talking about a zip-line adventure. I don't think I'll be able to do it without crying my eyes out knowing that a year ago we wouldn't even have considered it. And we're so excited. We shopped for the girls' bathing suits and I'm so proud of Bailey - she picked out a 2-piece! She says people will just think she was in a shark attack when they see her Berlin scars. She can point off-shore and say, "Yep, right out there!" HaHa! She's got such a good attitude. And Dr. D fixed her belly button! Not surgically either. She had a herniated belly button from all the fluid and pressure on her belly last year, and, of course, surgery was an option to tuck it back in but no one wanted to do that. Dr. D told her to wear an ace bandage around it for a while and, believe it or not, it worked! She's been wearing an ace bandage every day without fail and even putting a cotton ball on her belly button to push it in even further. And now, it looks great! But she's continuing to wear the bandage until the day we leave for Hawaii just so it won't pop back out. Ha! We're really getting excited. We all get to go - me, Tom, Bailey, Josie, Riss, and Scott and Nancy. Tom's afraid of flying, Rissy's afraid of flying, Josie's afraid of sharks, and Bailey and I just simply can't wait. It will be such an exciting celebration for all of us. We all went through very difficult times these past 4 years especially. So, we're in the thick of getting ready for our trip. Did I say we were going to Hawaii?!

Hopefully I won't be writing much more until after our trip since no news is good news. We'll take lots of pictures with my new camera and keep a journal so I will be sure not to miss any details when I get back.

Love you all!
Angie

7 Comments:

Anonymous Anonymous said...

Angie: Thanks so much for posting. Bailey is such a strong girl, and she and her sisters have been through so much (not to mention you and Tom, and the rest of the family), that a trip to such a wonderful place as Maui, all together as a family, well, it's just the best! It's so wonderful, in a world filled with negatives, that there's a place like Riley, with all its wonderful people, and organizations like Make a Wish, that make the world a better place! Thanks to you for sharing your story, and to everyone who is helping Bailey!

Much love, and Bon Voyage!
Diane

6:56 AM  
Anonymous Anonymous said...

Angie Thank you for posting the no-new is good news. I am thrilled to hear that Bailey is still doing so well. How much fun for the whole family to go to Hawaii. My Daniel is afraid of sharks in the ocean. He will be graduating from high school at the end of the month. The years just keep moving along.
((to all)) Janet Shelton

12:59 PM  
Anonymous Anonymous said...

It's great to hear Bailey is doing so well. Have a wonderful trip! You all deserve it. Can't wait to see pics. Enjoy!!

:) Lindsay
Riley Child Life

8:53 AM  
Anonymous Anonymous said...

Angie....It was so great to read your post!! I've been checking once a week or so, since I don't get to see you every day anymore. I'm so happy for Bailey and your family. Those doctors truly are miracle workers, aren't they? Enjoy every second of your trip to Hawaii ~ you must feel so very blessed! Take care, Teri Margason

10:53 PM  
Anonymous Anonymous said...

So glad to hear that Bailey is doing well. I ran across this blog while serching for Dr. T's e-mail address. That man is AWESOME! I don't know if you remember my family or not - my son, Luke Sailer, was born just before Bailey got her Berlin Heart. She came to visit him in the ICU just before her surgery. We also ran into you last fall during Luke's Fontan completion. Anyway, we think about Bailey often and wonder how she's doing. We were happy to find this blog and see such a great posting! Have a wonderful time on your trip.

Take care,
The Sailer's
Nick, Amber, Gabe, and Luke

You can visit Luke's carepage at www.carepages.com (carepage name: lukesailer)

10:10 PM  
Anonymous Anonymous said...

It is so neat to hear how well Baily is doing. I have been following her story forever. I prayed for her heart and rejoiced when one wasn't needed. i loved seeing the news story they did on all of you and i remembered your triumps when my andrew was fighting for his life.

I am excited about the make a wish. we just went to orlando and had the time of our lives. A friend of ours went to Maui the week before we went on our trip and it sounds like a dream. Have a wonderful time and I rejoice that things are going so well for you!

heart hugs,
Wendy mom to Andrew 18 l-tga and recent graduate! (We have a blog of sorts at carepages.com with a password or page name of andrewjosephspage. Let me know if you stop by.)

4:43 PM  
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4:23 PM  

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