Thursday, April 14, 2005

Marissa Spends the Day With Us

Marissa spent the day with us today. She walked in about 9:00 this morning and crawled into bed with me and we cuddled together for a little while. It was sooooo nice! She's such a sweetie. She's been spending the days with her twin cousins, Emily and Lyndie, since we've been in the hospital. Thank you, Jim and Robin, for taking care of her while Tom's at work. She loves coming over - even when they fight like sisters!

Bailey woke up without a fever but with pretty bad nausea. It passed by lunch time. Due to the fever she had last night, they came in to check out her Berlin Heart sites and her PIC line site to make sure there was no sign of infection. They also did a chest X-ray and looked in her ears - all for the same reason. They didn't find anything, which is really good! It probably means it's all from the IVIG medication. So, great there's no infection, but bummer since she'll be getting the IVIG at least twice a week.

Bailey's doing great on her homework. She finally got assignments in all her classes from school, and she's been working hard on getting those done. I'm really proud of her. So she has difficulty sometimes being motivated to do homework - who doesn't?

I think I'm going to talk with the Child Psych people tomorrow about Bailey and her relationship (or lack thereof) with her sisters during her extended hospital stay. Whenever the girls visit, she clams up and pretty much snaps at them when they try to talk to her. And at the same time, Josie, at first, was overwhelmed with all the hospital stuff and didn't really know what to say to Bailey or how to act, but now that she's getting used to it, she doesn't really want to talk to Bailey for fear of getting snapped at. It's not bad, it's just obviously not the relationship they had at home. And it probably won't take any time for it to get back to normal after we get home, but it just saddens me to see them uncomfortable around each other. Tom says it might be because Bailey has me to herself all day long and gets a little territorial when the other girls show up. I just want everybody to be happy, darn it!

Dr. T is supposed to be flying in tonight. I tell ya, it's not the same around here without him to push around. Haha! We picked him up a lava lamp for his "bachelor pad". Will Smith's character in Shark Tale says every bachelor needs one, and that's the part of the movie he was watching when he tracked us down on the Hollywood Movie showing of Shark Tale last week. He said he didn't have one, so he has one now! At least we got him a blue one and not a pink one - he should be grateful.

We've been here 76 days today. Don't have any idea how much longer we'll be here. Please continue to pray for the donor and his/her family.

Catch you tomorrow!

Angie


5 Comments:

Blogger Diane Roe said...

Angie and Bailey: We do think about and pray for any family faced with the difficult circumstances and decisions that lead to donation of their child's organs. Last week, we cried for the family facing the loss of their loved one, even as we hoped that the donation would mean new life for Bailey. I guess nothing is without cost, at least here on earth.

Thank you for sharing your concerns about the girls' relationships. I do think that any problems will be resolved when the family is back together, but it's difficult for children, as well as for us adults, to understand why these trials occur. You've always done such a good job of raising all the girls, and not letting Bailey's medical problems be the total focus of all your lives, that I'm sure it's difficult for Josie, in paricular, to adjust now that Bailey has had to be your main focus for 76 days (but, who's counting?). I mention Josie because she is such a thoughtful, quiet little person, and she probably keeps her worries to herself. We'll be sure to keep the whole family, including Tom and Marissa, in our thoughts and prayers, and trust that soon your little family will be reunited!
Love, Diane

7:25 AM  
Blogger Aunt Vickie said...

You girls hang in there. Its been a long haul and hopefully it will be over soon. We all continue to pray for you, and I think we're all feelin' the "Mommy thing", we just want to make you both feel better and it bums us 'cause we can't. All in God's time I guess, as hard as it sometimes is.

Love you and see you soon, Aunt Vickie

7:30 AM  
Blogger Annette said...

Dear Angie,

Diane and Vickie said it beautifully. I pray for Bailey, and then I think about the donor family, and I catch my breath. But Bailey is the main concern and we all pray for her to get her new heart soon.

It's wonderful that you're so attuned to your whole family. I don't know Josie and Marissa well at all but I'm sure you know what every little nuance means. You're fortunate to have staff at your disposal who can help you smooth away any rough spots. You're just a wonderful mother and are doing the very best!

I want to share some good news, if I may. Matthew, who is graduating in less than 3 weeks, wrote a paper that was nominated for an award in his department. Last night at 12:15 (a.m.) he woke me up to tell me he won!!!! We're all going to a special ceremony at school so he can get the award - they also want him to make a small speech. Isn't that great?

Anyway, you both keep up the good work! If it's alright with you, I'd like to visit again. I'll try not to catch you napping again (lol)!!!!

All my love,
Annette :)

4:27 PM  
Blogger Barb Godshall said...

Hello Angie and Bailey,
I pray for you daily and for the donor family also. I read your website almost daily. Wonderful things happen at the Riley Hospital for Children! Expecting great things for all of you!
Barb Godshall

5:30 PM  
Blogger Sue Figert Meyer said...

One night a man had a dream. He dreamed he was walking along the beach with the Lord. Across the sky flashed scenes from his life. For each scene he noticed two sets of footprints in the sand; one belonged to him, and the other to the Lord.

When the last scene of his life flashed before him, he looked back at the footprints in the sand. He noticed that many times along the path of his life there was only one set of footprints. He also noticed that it happened at the very lowest and saddest times in his life.

This really bothered him and he questioned the Lord about it. Lord, you said that once I decided to follow you, you'd walk with me all the way. But I noticed that during the most troublesome times in my life there is only one set of footprints. I don't understand why when I needed you most you would leave me.

The Lord replied. My precious, precious child. I love you and I would never leave you. During your times of trial and suffering, when you see only one set of fooprints, it was then that I carried you. "Footprints"

10:31 PM  

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