Tuesday, March 22, 2005

Continuing to Feel Much Better

I think we've been here too long -- Bailey taught me how to play Poker today (Scott taught her over the weekend) and now we're watching Orange County Chopper. I'm a little concerned . . .

Bailey's continuing to feel much better. Her left arm is still swollen and really sore from the failed attempts to put her PIC line in, but they're saying it will get better as the swelling goes down.

We had a lot of fun with occupational therapy and Child Life today (listen to me -- I'm saying "we" had fun. I guess it is Bailey's therapy!). Occupational therapy came in and brought ingredients to make treats -- butterscotch haystacks and tiger snacks. Oh my! They're delicious. I think everyone knows how to make butterscotch haystacks, so I thought I'd share the recipe for the tiger snacks:

Tiger Bites:
1 10-oz. pkg regular marshmallows (or 4 cups miniature)
1/4 c. margarine
1/3 c. peanut butter
7 1/2 c. (or 1 10-oz. box) Frosted Flakes

In a 4-quart microwavable bowl melt marshmallows and margarine on high for 3 minutes, stirring halfway through the cooking. Stir in peanut butter until smooth. Add and stir in Frosted Flakes until well coated. Using a buttered spatula scrape mixture from bowl onto waxed paper. Let cool and break into bite sized pieces.

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Then Child Life came in and Bailey made a mask and a little puppy out of cast material. I didn't ask where they got the cast material because I didn't want to incriminate them, but I think they stole them from the E.R.

This IVIG stuff (to lower Bailey's antibodies to lessen the rejection of a new heart) must be working really well, because we heard twice today from two different people that "hopefully we'll get things moving here pretty soon". Colin came to visit again today and we were talking about how holidays result in lots of donors due to all the traveling and, therefore, accidents on the roads. I never quite thought of it that way. Maybe that's what they mean by "getting things moving pretty soon" since Easter's coming up. That's really tough to think about. Please continue to pray for the donor's family.

An interesting comment made today by the infectious disease doctor (the sister of the guy at the Speedway responsible for putting the documentary together): I asked how the documentary was going, and she said really good but it's going to be tough to get across how difficult this whole process of the Berlin Heart is because Bailey and Dr. T have made it look so easy. I can't say I'm sorry for that! She also said that Patrick Dempsey has agreed to narrate the documentary. I'm not really sure who that is, but Bailey is pretty excited. She said he was in "Sweet Home Alabama" and the new series "Gray's Anatomy".

Lara - it was good to hear your message today! Unfortunately, our phone ringer wasn't working (Scott called 5 times today and it never rang once), but we have a new ringer now. Please try to call again!! I still miss you!

Good night, everyone. I'll talk to you tomorrow.

Angie

4 Comments:

Blogger Mary Ann Lucas said...

Oh Bailey! Patrick Dempsey is sooooooooooooo cuuuuute! Well, maybe you might not think so since he is "old" like me and your mom (sorry ang), but never the less, you promise me that you will remember your "single and old" friends when you get to meet all of these famous people. I do have to tell you that if Robert Redford ever comes knocking on your door, I will have to send you down the hall riding on your Berlin Heart Computer like a wagon! ha!

I'm a bit worried about you two and what you are watching on the tube. I'll really get worried if you start watching "Smack Down" or "Raw"! [saying prayer...please Lord, control their urges to watch "the rock"...thank you Amen]

Sorry, don't know what has come over me this morning. I'm a tiny bit out of control! Wonder if it's the "we made it through another winter" happy dance. Spring is well on it's way and I hope you get to enjoy the nice days when we have them.

Well, I better sign off here. I'm having "lunch date" withdrawal Angie. I miss you and love you dearly!

Hugs and Kisses...Mary Ann

9:18 AM  
Blogger Annette said...

I tried to post last night but couldn't get in. I'm home for lunch right now, so I thought'd I'd see what's going on!

I don't know what Butterscotch Haystacks are, but they sure sound good!

Bailey, your pictures are great! Thank you mom for posting them! Looks like you get some pretty good company visiting you!

Well, I'm glad you're continuing to do well and hopefully that new heart will arrive soon. As you mom said, I'll pray for the donor's family, and also for you and your family!

I'm sticking a little P.S. in here to all my friends at R&L - I miss you guys so much!!!!!

Love,
Annette

1:01 PM  
Blogger Aunt Debi said...

Bails: I am glad to hear you are feeling better, and I hope your arm dose not hurt too much. Okay lets get to the good stuff, Patrick Dempsey is a hottie as your cousin Ryann would say and I would have picked him in "Sweet Home Alabama". So single or not please remember your wonderful Aunt Debi should you get too meet him. I think someone has a huge birthday coming up....... Start thinking about some fun ideas. Keeping you in our prayers everyday. Lots of Love to you.

4:22 PM  
Blogger Barb Godshall said...

Bailey,
I am soooo glad you are feeling better. The butterscotch treat sounds really good....and fun too.
I loved the pictures you posted....the Berlin Heart does look like you could ride it...!
Praying for you and your mom lots.
Barb Godshall

8:22 PM  

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