Getting Back to "Normal"

Hello everyone! Lots has happened this past week toward getting back to a normal life. Bailey started school last Thursday and all is going very well. She missed a couple days this week, though, because of a sore throat and really stuffy nose - no fever - but it was enough to see her pediatrician. He found no infection and no strep, so she went back to school today. Josie's doing well in school and has basketball tryouts tonight. Marissa's doing great in kindergarten. She loves it! They keep learning little jingles about all the different colors - they're studying a new color every week. And she walks around the house and the neighborhood singing her little color jingles . . . at the top of her lungs! And, I started back to work this week. That was a strange feeling. I felt really nervous to leave home (especially with Bailey there sick that particular day) and nervous to come back to work. I was afraid I had forgotten everything I learned over the past 20 years. Lots of things have changed and the things that haven't changed I've pretty much forgotten. But it's coming back quickly - thank goodness (for both me and my boss!).

I'm sure you're sitting on pins and needles waiting to hear about the concert . . . well, IT WAS INCREDIBLE!!! We had such a fun time. We got to meet Keith Urban and talk to him. He got down on his knees to talk to Marissa. She wouldn't look at him, but she did talk to him. We got our picture taken with him too. He remembered sending Bailey an autographed picture from Australia while she was in the hospital. When I told him that this was her, he said "Oh! That Bailey! I'm so glad you're out of the hospital and doing great! And I bet Mom is too." He was such a nice guy. We had the best time and will not soon forget the evening.

I'd better clock in and get to work now.
Life is good!

Love to all,
Angie

Follow-Up Appt. Went Well

We had a follow-up appointment with Dr. Darragh yesterday at Riley. Bailey's been having trouble getting blood work done - she gets really scared and upset - but yesterday she did a great job. In fact, I tried to bribe her by telling her that if we went right in, got it done, and came right out, I would eat any one of those Harry Potter nasty jelly beans that the nurses on the Heart Center gave her. (Thanks a lot, guys!) Considering her past blood work experiences lately, I thought it was a pretty safe bet. Wrong! She went right in, got it done, and came right out, and quickly handed me a "nasal secretion" (if you know what I mean) jelly bean. My body wanted to reject it right away, just because of the thought, but I kept my promise. The first 10 seconds really weren't that bad, then "the taste" set in and, you guessed it, I ran to the trash can and water fountain. My mouth has never watered so much in my life! That stuff is nasty! Somehow, she got her dad then to try a dirt-flavored, and then an ear-wax flavored, and finally a "nasal secretion" flavored. He was done.

If you made it past the first paragraph of this posting and are still with me, her echo went well. Her pressures appeared to be in the 60's, but her medication was due and she hadn't had it yet. But they were still pleased. Next appointment they want to do an echo before her medicine and one after her medicine. Dr. T looked at her and said, "Well, things are obviously better because you look great." She got the last of her canula site stitches removed - no more scabs on those either. I told her it kind of looks like she has 3 belly buttons now! Don't get me wrong - we're very proud of those belly buttons!! Dr. Darragh said she's doing so well that she could go back to school today if she wanted (she was originally going to skip the first week and go back next week), but she negotiated with him and they decided on Thursday. She told him she still had some things to do - she wants to visit WFMS before she goes back and I think we're going to get to do that tomorrow. We don't have to keep track of her "ins" and "outs" anymore, so that makes things a lot easier too.

And Tom finished her room yesterday! Yeah!!! We moved her bed out of the living room and into her room last night. All the girls got to sleep in their own rooms for the first time in 7 months!! (Josie and Rissy slept in our bed while we were in the hospital and, when Bailey came home, they all slept downstairs in the living room partially because they all wanted to be together and partially because Bailey didn't want to sleep down there by herself.) Rissy told me this morning that it feels like we're a normal family again now. I questioned her what she meant by that, and she said, "Because we all slept in our own beds last night." And I'm going back to work next week, so we're feeling things are getting back to normal a little bit every day.

Sunday was a great day for us. The documentary guys at the Speedway invited us down to the Indy car race in Kentucky, and they gave us the royal treatment. It was very hot that day, but they drove us around in a golf cart so Bailey wouldn't have to walk a lot. And it was a long day - we got there about 9:00 and kept very busy with activities until the race started at about 3:00 (our time). We got home at 9:30. But the girls all had a great time and Bailey managed to get a quick nap in the suite before the race started and felt great the whole day. We got to meet some of the drivers and owners - Scott was incredibly excited to get Rick Mears' autograph, his boyhood hero. Scott and Nancy and Tom and I got to ride around the track in a pace car. That was so much fun! Scott and Nancy rode with Al Unser Sr. and Tom and I rode with Johnny Rutherford! They went about 125 mph and we went only 115. Haha! And to think that was only half as fast as the drivers go! We had lunch in the IRL tent and saw Mary Hullman-George and Tony George. We all got to meet Dan Weldon (the Indy 500 winner this year). He tried to get Marissa to give him "5" and she wouldn't do it. I can't wait to tell her when she gets older that she blew off the 2005 Indy 500 winner! Bailey and Josie got his autograph. He was a very nice guy. Actually, everyone we met was very nice. And our suite was right on the finish line, so we had a great view of the race. The track was only a mile and a half long, so we could see clearly all the way around it. It was a really good race. Dan Weldon and Scott Sharp (who ended up winning) ran side by side (even in the corners) for about 3 or 4 laps. It was an exciting race. I used to be a big fan of Indy car races 15 to 20 years ago, so it was pretty exciting to be a part of it again.

Today was Rissy's first day of Kindergarten! It was traumatic. The entire family was standing in the driveway waiting for the bus with all our neighbors, and Rissy was fine until the bus gets here. She starts crying, saying "I don't wanna go!!" So, I take her hand and walk her up to the bus. The nice bus driver is waiting for her to get on but she's obviously not going to be doing that! So, I pick her up and hoist her onto the first step. And after a few seconds, I hoist her up and deposit her onto the 2nd step. Then, after a few seconds, I plead with our little neighbor girl, Kennedy, and she's very nice and helps me out by sitting with her in the front seat. So, the bus door closes, I turn around, and Bailey's standing there in tears and Tom's rejoicing because he just moved ahead of me in Rissy's "favorite parent" list. I wasn't too shaken up about it until I went to pick her up - then I started crying while I was sitting in the line of cars. I guess I thought she wasn't going to speak to me again. I knew I was in trouble if the teacher came out the door carrying her! But she didn't. She was in line with all the other kids, smiling and waving to us. So, all is well!

I think we're beginning to really sink back into our "old lives" now. I'm starting to let go of that insecure feeling of being away from the hospital. But it's still good to see them every 2 weeks - if not just for the security of a successful medical visit, but also to see all our buddies! We do miss them!

Bailey filmed a commercial yesterday for Riley - they're going to start running it on Channel 13 in about 2 weeks. So keep an eye out!

We got a new computer (a huge thank you to you-know-who-you-are!!), so I'm going to try and post some pictures later today or tomorrow. If they don't show up, you'll know I wasn't successful yet, but I'll keep trying!

Talk to you again soon!
Love, Angie

We're back!

Had a great time! Bailey climbed a sand dune - resting a few times - but she made it without any trouble at all. I was getting on her nerves being the over-protective mom. But I just kept telling myself that I knew she wouldn't do it if she didn't think she was able. We found a family fun park and raced go-karts. Bailey won and Josie spun out and hit the wall because Tom cut her off at the turn. Rissy even raced the Junior go-karts. She was embarrassed at first so Josie and Bailey raced with her. She had so much fun! We all did! It was good to get back though. We still have quite a bit to do before school starts. Rissy had her kindergarten orientation tonight. She loves her teacher and her classroom, and she got to climb on a bus so she could see what that was all about. She says she's not nervous anymore. We'll see.

Hope all is well with everyone out there. Bailey has a follow-up appointment with cardiology on Monday. I'll let you know how that goes.

Talk to you soon!
Angie

We're off on vacation!

We are all so excited. The girls are packing their bags. We're leaving in the morning for Indiana Dunes. It's almost Michigan! We'll return Thursday in time for Rissy's kindergarten orientation in the evening. We wouldn't miss that for anything!

Bailey is continuing to do incredibly well. She's got great color and her energy is improving every day. She's still sore in her chest, of course, but she hasn't taken pain medication in over a week. She took her first bike ride yesterday. It was so fun to ride bikes with all my girls. We made it to church this morning! So nice to be back. They gave Bailey a very warm welcome.

School starts the 16th, but Bailey will miss the first week. She can't go to school for 4 weeks after surgery, and that'll be the 22nd. My current plan is to return to work when Bailey returns to school. That will be strange, but it will be nice to see my friends at R&L and I'll get to hear the WFMS morning show again!!

I'm signing off for now - have lots more packing and laundry to do. See you soon!

Love you all,
Angie

Bailey's Doing Great

Hi everybody! To tell you the truth, besides computer issues, probably the biggest reason I've not been posting every day is because I've just been plain nervous here at home! Bailey is doing great and improves a little more every day. But, boy! Not having the security blanket of the hospital right outside our room has taken some getting used to - and I don't think I'm quite there yet, but, just like Bailey, I'm doing a little better every day. We had a follow-up appointment with Dr. T today and, although she was so upset to get her blood drawn that we ended up not getting that done, everything went very well. Sterile dressing changes are over now. Darn! I was starting to feel like a nurse! Her incision is healing very well and the canula sites are also doing well. There are still some stitches in there - he was able to remove a couple but the others are embedded in scabs - but everything is looking really good. No sign of infection yet - and hopefully it will remain that way. Dr. T told us today that they just can't believe she's doing so well. He said she's been talked about a lot lately about what they've learned from her and how they can use that information in the future. He also told us about two of his VAD patients that Bailey visited at Methodist and how Bailey has inspired them to not give up and to even start getting out and moving around a bit. That, in itself, is worth the whole last 6 months. They were telling themselves that if Bailey can do it, they can do it.

We've done a little school shopping, registered for school . . . even went to the mall tonight for a quick shopping trip. We're trying to get a little mini-vacation to southwest Michigan together in the next week or so. Vacation! Boy, that would be nice.

Bailey's been very patient with her room. We should be able to move her furniture in tomorrow! It's very pretty. Tom did a fantastic job on the woodwork - and I did a pretty decent job myself on painting the ENTIRE wall of shelves. However, it has really shown me how much more out of shape I am than I was 6 months ago. I guess those feelings I had of my muscles just dwindling away were real! I've been trying to squeeze in a nap during the day - out of necessity, not just desire. I guess that will eventually get back to normal - but I think I really need to get some exercise to help boost it along. I really am shocked at how physically weak I am.

Bailey's got this popping sensation across her chest if she moves her arms just right, and it really causes her a lot of pain. Dr. T looked closely at things today - he was feeling around and pressing right on her incision on her sternum, kind of made me cringe - but everything seemed fine. He says it's just a part of the healing process. It was good to see him and his staff today. After seeing them every day for such a long time, we really are missing them!

Well, that's pretty much it for now. Just know that we are doing fine, thanking God every day and all day long for our blessings, and appreciate all of you out there for your prayers.

Have a great day everybody! We'll talk to you again soon.
Angie