Tuesday, October 04, 2005

Bailey's Doing Well!

Hi everyone! It's been a while, huh? Bailey had a cardiology follow-up Friday and she's doing well. Her left ventricle is functioning great, and her "numbers" look good. They're doing a cath in December to precisely look at things. We thank God every day that we received such a gift and continue to receive gifts on a daily basis. It's still hard to believe that we waited for a transplant for 4 months only to go on and be able to keep Bailey's own heart.

Have you seen Bailey's commercial on Channel 13? She's cute as a button, don't you think?!

The speedway guys are working hard on the documentary. They hope to have it very close to done by the end of this month. Can't wait to see it!

Bailey is continuing with a normal teenage life. She's had her first two official babysitting jobs. She attended a school dance. She's gaining weight and growing taller! She's had two sore throats and has been able to fight them off without them turning into anything worse. That hasn't happened in years! She complains every morning about waking up and every afternoon about doing homework and practicing her violin. I think that's pretty normal, don't you! We tape Grey's Anatomy every Sunday night so we can watch her friend Patrick Dempsey. They've exchanged a few phone calls since we've been home. We continue to keep in touch with our nurses. We had a cookout at Scott's house for them back in September. That was fun! We've been to movies, out to dinner, rented movies, and visited the zoo - all with her nurses. I thought I wouldn't miss them as much the farther out from our stay that we got, but it's just the opposite. The longer we are out, the more I miss them! So, we're working hard to keep in touch, and visit the hospital when we can.

Marissa is playing soccer now. She's doing a great job! However, Grandma and Grandpa came to watch a game and she cried the whole time - I guess didn't like anyone new watching her. Her soccer pictures were a disaster! She was so distressed at everyone looking at her that she cried and cried - really hard. We got them back and she just looks like she's been completely abused and neglected. In the individual picture, she's standing there with a sour look on her face and big red eyes. In the team picture, she's standing in the back row bawling. And THEN!! I must have been completely stressed that night too because when I filled out the order form, I put "Josie" McGraw instead of Marissa, so her individual picture came back with a big "Josie McGraw" printed nicely across the bottom of it. Marissa and I would both like to just completely forget about that evening . . . so, I think we will! Rissy's turning 6 next week. Josie turned 11 back in September.

Josie's doing great at travel basketball. She really enjoys it, but it keeps her (and us) pretty busy. But we enjoy traveling on Sunday afternoons to her games - usually still in Central Indiana. She's doing a great job in school and is playing cello. She has taken on the role of "fish caregiver". She feeds her and Bailey's fish every day. She does a better job than I did! And she worked really hard at helping me "spring clean" our house when we returned from the hospital. She's a sweet and caring little soul.

One of the transplant patients who visited with us while we were in the hospital to educate and encourage Bailey passed away back in August. Taryn will always hold a special place in our hearts, and she will be missed. She was definitely a bright light in our 6-month stay at Riley.

So, we've been home 2 1/2 months, and so far, so good! I think about our "adventure" daily and each and every one of Bailey's medical team members daily. "Thank you" is not sufficient, but it's all we have, and it is sincere. I'm overflowing with such gratitude that I don't know what to do with it all! It would make me happy to be able to personally thank each and every one of you out there who read the blog, prayed for us, visited us, supported us financially, supported us emotionally, still pray for us, and/or simply passed us in the halls at the hospital and gave us a smile. Then and only then, I might satisfied that I've disbursed my gratitude sufficiently.

I'm so grateful for this blog page too. It has allowed us to share our experience with others out there and, hopefully, in the process, reveal what an incredible place Riley Hospital is; what incredible people work there and how they pour their hearts and souls into their patients; what an incredible machine the Berlin Heart is and how it can help many, many children and what a need there is for the FDA to approve its use; how God orchestrates our lives when we don't expect it or don't even see it; how grateful we are to God for the incredible gift of life he has given Bailey and our family; and it has even allowed us to rekindle old friendships. But, ultimately, if this blog page has brought even one person closer to God, it's served its purpose.

Thank you for sharing our experience with us.

Love and gratefulness to all,
Angie

5 Comments:

Blogger Lara said...

Hmmpf, it's about time!!!

Thanks for the wonderful update! It's great to see how everyone's getting back to normal, having normal, everyday experiences, and just enjoying being back in the real world. I'd love to see Bailey's commercial and the documentary (maybe you can tape them and send to me???). I was just thinking the other day about the hayride we all went on a couple of years ago. I wish we could do it again!

Keep us updated on the all the doctor visits, etc.!

Miss you lots!

Love,

Lara

3:06 PM  
Anonymous Kara said...

YEAH! By chance I checked the page because I had been wondering about you guys. We love the commercial - Bailey looks so healthy! We are glad to hear the everything is going so well. Glad you updated us!

Kara, Jami, and Kaitlin

8:35 AM  
Anonymous Gordo said...

Hey Guys!
I've been checking the blog every single day, even though it's just as easy to pick up the phone and call. I'm can't explain how happy all of us are to be a part of your life. I'm also happy that you've been able to lead a "normal" life after such abnormal circumstances. I can't wait to see you soon!
Gordo

9:50 PM  
Blogger Annette said...

I too just happened to think "I wonder if Angie wrote anything new?" And here you are!

I'm so happy that you're all back to normal! But actually you'll never be the same again after your experiences. It's so great that Bailey is doing what she's meant to do and that she's thriving!!!!!

I miss you and Vickie - say hi to her for me! I'm doing okay and glad you all are too!!!!

Much love,
Annette

10:30 PM  
Blogger Indiana Miller Family said...

It was nice to read the update. Glad to know Bailey is doing so well. I had Alex up at Riley just today because she continues to have arrythmias, etc. They are checking medicine blood levels, EKG, and 30-day event monitor now. And the beat goes on! Will keep checking your site for updates. There's a brief update on the Heartwalk at millerindiana.blogspot.com.

Continued good wishes and prayers for all of you.

Charles Miller

12:16 PM  

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