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!

Angie

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!