Who's the cutest girl around?

I am a mom of a cutie pie (very biased). And I wanted to share my experiences with others (including my cuties grandparents, great-grandparents, numerous uncles and other relatives). I love being a mom and can't imagine doing anything else.

Friday, April 27, 2007

Day +48

I was checking my phone messages today and I stumbled across this photo. It is from the car ride to the hospital 58 days ago. She was in an amazing mood that morning. She was laughing and screaming with Pa in the backseat. She had no idea what was ahead for her. she was just happy to be with her some of her favorite people. She is the toughest kid I know. I haven't seen the silly girl as often lately. But she's still in there. We get glimmers and I get so excited about the future when she will be a carefree little girl, when hospitals are a distant memory. I think she will always remember bits and peices. She's that kind of a kid. But I pray she only remembers the good things...like the sweet nurses, her Pa, Gigi and Nan being here all the time, special days with Daddy, new toys and new little friends. I hope that somehow those are the things I remember too. I don't want to live with this always in my side mirror. I don't want to live always looking over my shoulder or waiting for the other shoe to drop.


Things are stil the same. Her liver functions continue to creep towards normal. Unfortunelty she is still "stooling" around 6 times a day. If this doesn't stop soon they will be doing an experimental treatment on her next week. It is a cell infusion that will hopefully help with the GVHD. They say that there don't seem to be many side affects in the short term. They aren't sure if there could be any long term affects since it is such a new treatment. I would rather not be part of an experimental treatments. Please pray the steriods, cyclosporin, and cellcept (Spelling?) start to work so she doesn't have to have the experimental treatment.

11 Comments:

Blogger Jude's Mom said...

We love you!

Can't wait to see the picture of Livi in her car seat on the way HOME! I got so excited when I logged on and saw her in the car. Emily, you are the best mom I know! In Alivia's memories I hope she also recalls all the beautiful artwork on her windows and doors, a faithful Mama who held her through the nights and stayed with her through every moment, and a fun & funny Mama who was able to laugh with her even when she just wanted to burst into tears!

We keep praying!
Love,
Dan & Julie

6:46 AM  
Blogger momofcolin_chloe said...

Emily,

I wish I had advice on how not to "live always looking over my shoulder." After you've received a never-will-happen-to-me life experience, it's hard not to wait in anticipation of another, because you know it can happen now. But, just as you've been doing now, you'll take one day at a time, and each day that she is healthy, her sick days will become more distant to you and her. I'm sure there are terrible details you'll never forget and days you'll cry thinking back. But I pray for the day you can leave it all behind, so those memories have an opportunity to begin to become more distant.

Praying for your silly, screaming, happy Livi to present herself more each day. Praying for all that you ask and more.

Christi

7:56 AM  
Anonymous Anonymous said...

Praying for all you ask -
Cathy S.

8:10 AM  
Anonymous Anonymous said...

The Fedelis are praying for you today.

Love,
Amy

8:23 AM  
Anonymous Anonymous said...

awww - i love seeing that picture! it both saddened me that that sweet happy little girl had to go through such a horible thing, but also filled me with hope that we will see her in her car seat, without a mask or tubes or wires, smiling and ready to go out and play. i cant wait for that picture!

love you guys,
always praying,
rebekah

11:14 AM  
Anonymous Anonymous said...

Honey...I am crying and laughing and praying. Your blog entry was so poignant. I am hoping and trusting that God will answer all these prayers and soon. Love, Mom

11:22 AM  
Blogger Joe.Karen said...

we are still praying and praying for you and alivia, and the whole family. praying that alivia's bright silliness returns soon, and praying that you are able to avoid the experimental treatments.

love,
karen & joe

(p.s. i erased gigi's comments as requested, but found nothing even remotely obnoxious. quite the opposite in fact. always blessed by her love, as i know you are too!)

2:58 PM  
Blogger beth said...

praying

8:43 PM  
Anonymous grande aunt lisa said...

I love you guys!

GAL

11:06 PM  
Anonymous Anonymous said...

What a cute picture! I can't wait till the day you say you are out of the hospital, I can't wait for the day, you say she is healed. I pray that God will heal livi very soon. I pray that she will stop stooling so much. I pray that God will give you guys strength to get through each day. You are in my thoughts and prayers every day.

Love ya,
moriah

5:09 PM  
Anonymous Anonymous said...

I agree. I too look forward to the day when the picture is of Livi going home! I will be praying for all that you asked, and as always, for complete, total health and well-being. Hospital-free. Love in Jesus, Janet S.

9:38 PM  

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