Saturday, February 23, 2008

Jonas Brothers Concert and Echo

Bailey called on our good friend, Todd, to see if he could work his magic and get her tickets to a Jonas Brothers concert in Evansville. He came through for her! She was SO excited to take Paisley and Josie (Marissa opted to spend the night at a friend's house.) and, of course, they needed a driver . . . that was me. Knowing full well how far Evansville is from Indianapolis (3 1/2 hours to be exact), I was all for a road trip. I took my ear plugs . . . thank goodness! Lots and lots of screaming girls - my 3 included, I might add. Neither Bailey nor Paisley could speak after the concert. It was a good night. I have to say that the Jonas Brothers seem to be pretty neat kids - 16, 18 and 20 years old. I'm not too thrilled about a lot of teen idols out there, but the Jonases travel with their parents (who is/are/were minister(s)) and little brother. I haven't seen them do or say anything that makes me cringe as a mother and it was a relief to see another good, clean concert (they performed for the kids on our Children's Miracle Network trip in Disney World and Bailey actually spoke with them - I think she holds that memory dear to her heart).

I forgot about the time change, which meant we had plenty of time to get down there, but it also meant the concert started an hour later than expected WHICH means we get started toward home an hour later. Oh my. My expectation was that the girls would be so wound up from the concert that they'd be awake for half the trip . . . OH NO!! That didn't happen. 15 minutes into our return travels home . . . in the dark, on strange roads, and in the rain . . . they all 3 fall fast asleep. I pull over once about 1/3 of the way home to get gas and a Mountain Dew (caffeine!), and Bailey has the nerve to complain about the radio. I think my quote was: "Bailey, you're just gonna have to deal with it because I need something to listen to while I drink my caffeine and chew my gum!" It was a long trip. It stopped raining for about 10 minutes, but that was it. I contemplated pulling over to get a hotel, but I really like my own bed, so I kept going. Finally, just north of Edinburgh (only about 20 minutes from home), I had to call Tom. "If I blink one more time, my eyelids are gonna stay shut!" I ate so much junk food and drank so much caffeine that I had a really bad stomach ache when we finally did get home at 2:15am. The girls crawl out of the van, "Oh, I'm soooooo tired, Mmmmmmommmmmmm." Hm.

Bailey had an echo this week. It went great! Ever since her surgery in November, we've heard "stable" . . . which is very good! But THIS time, we heard the word "better" three different times in Dr. Darragh's report, AND we heard "best in a while". Yay!!! He made it very clear that she's not near normal, but any improvement is worth celebrating. And, Bailey returned to school full time as of Thursday. She's felt great!! I think it's good for her to finally feel completely a part of the school again. She's even going to go to "pit orchestra" rehearsal on Monday nights. Every little step toward "normal" is so, so, so exciting to us.

And Bailey's been talking with our friends at the Foundation over the past year in hopes of organizing a Dance Marathon at the high school to raise money for Riley. Unfortunately, she's been so sick this past year, that plans kept getting interrupted. We're meeting this week with our friend Katherine to get the ball rolling! We're so excited about that, too. It will feel really good to get to do something special for Riley. It's an incredible place, as you well know.

Enjoy the pics!
Have an incredibly great weekend! We will.


A little blurry, but "do-able".

Josie and I discover we're in the wrong seats, so we just move across the aisle and Bailey and Paisley still can't find us.

"The Bus!" The girls watch the doors for about 45 minutes hoping someone somewhere will emerge.

A pro photo, of course.

Ok, they're a little blurry, but they give you the idea. We had a blast!

Saturday, February 16, 2008

Quick Update

Thank you for your prayers for Eryn. However, she got the flu this week and they postponed her surgery to March 3rd.

The Star interviewed Bailey and Dr. T and Mr. Koers (her high school principal) earlier this week for an article that ran today (Saturday - you can also see it on-line - there are 2 versions, a longer one and a shorter one) about the Berlin Heart and Bailey's artwork that was put on a magnet and being sold at Wal-Mart for $1 to raise money for Riley. I know you have a spot or 2 on your fridge that would hold a new magnet very nicely . . . and I know where you can find one!!

The resolution at the State House that Bailey was involved in earlier this week was about organ donation. Rep. Dale Grubb asked Bailey and another teen girl who received a lung transplant to take "the floor" and encourage organ donation. They did a very good job.

Next week is only a 3-day week for school. Bailey's going to take advantage of the shortened week to attend school full-time to see if she is physically up to it. Keep your fingers crossed for us!

Have a great day! It's beautiful outside right now!


Sunday, February 10, 2008

Life is Good

It's so nice not to have to write daily updates on this blog - as you know, no news is good news. Although it does give me some kind of unexplained comfort to sit down and write to you all - it makes me feel surrounded by friends and family (and even strangers) who have nothing but love for Bailey and our family. Sometimes it starts to feel heavy and lonely out here - we don't have the daily physical support of the incredible doctors and staff at Riley and we slide further and further into our daily and weekly routine of everyday life . . . which is DEFINITELY a good thing considering the alternative. But we do miss everyone at the hospital . . . and, trust me, it feels REALLY good to be in a position to be able to miss them. We had weekly visits after going home in December from Bailey's last open-heart surgery and now her echos are every month. And, as for labs, which have been every 1 to 2 weeks, we purchased a machine for home (just a finger stick) to test her INR (thinness of blood) so that's allowed us to stretch out the lab visits.

We're still getting things worked out with our primary and secondary insurances to cover Bailey's two most expensive medications (viagra and bosentan). We're fairly confident it's just a matter of paperwork from Bailey's doctors to get them to cover them. In fact, just this morning I called in a refill for viagra, and the pharmacist advised it went through insurance as just a $50 co-pay. Shwew! Now we just need them to come through with the bosentan.

You would think I would be feeling more and more relaxed as Bailey comes through every day still feeling good and no sign of fluid coming back and as we slowly but surely get things figured out with insurance and the prescriptions . . . but I tell you, I'm feeling maybe even more anxious. Maybe and hopefully it's just a passing phenomenon. I'm thinking it's just a normal phase of maybe a slight case of post-traumatic stress . . . still hoping and praying that Bailey will continue to do well but being fully aware of the past year and how quickly things can become quite scary.

We had a great time at the WFMS radiothon on Friday. It's always great to see the gang from WFMS - Mimi, Vicki, Steve, Bob. They are such wonderful people to do what they do for Riley. This is a big fundraiser for the hospital and we are so, so grateful for the hospital. (That sounds funny to say . . . it's like saying "We are so, so grateful for the sun." Well, OF COURSE, we're grateful for the sun - it brings us warmth, light, green grass, spring flowers, and the list goes on and on and on.) Dr. T was supposed to be interviewed on the radio with Bailey but he couldn't make it because he was in an emergency surgery. It's pretty difficult to be disappointed, because we've been in that position of needing him on an emergency basis. He called Bailey after we left the radiothon to see where we were. He asked her how much she weighed (because, of course, we're all afraid the fluid might return) and she proudly said "83 pounds!" And his response? "Well, it looks like that sham operation worked." He's so funny. He jokingly refers to it as a "sham operation" and we know it, without a doubt, to be yet another life-saving procedure performed by the best in the world. We are so blessed as the state of Indiana to have Riley right here in our backyard. As long as there's Riley, there's hope.

Please say a prayer for my friend Marsha's family. Her daughter Eryn is a fellow "Riley kid" who's having a surgery on Wednesday. No matter how major or minor the procedure, as a Riley family, it causes all sorts of stress and anxiety. Please pray for peace and for everything to go well.

Have a great week everybody! We'll do the same!


P.S. Bailey is receiving a resolution (I think it is called) at the General Assembly tomorrow (Mon.) together with another Riley patient. I really don't know much about it. I just found out about it on Thursday. And if you're on the south side, The South Side insert of the Star is coming on Tuesday to interview Bailey to showcase her artwork that Walmart is going to start selling soon on a magnet to raise funds for Riley. So, shop at Walmart and fill your refrigerator door with Bailey's artwork! Ha!