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.

Monday, April 23, 2007

Day +44

Alivia's liver function numbers continue to rise even though they have stopped all meds and IV nutrition that might make them rise. So starting today they are upping her dose of steriods to a little more than double what she was getting and also adding a med called Remicade (which she is getting now). If neither of these things work they will try an experiemental treatment that is a T-cell infusions.

She is a bit crabby lately (I'm sure I would be super crabby if it was me so a bit is no big deal). She just seems unhappy more often. She was up every 45 min to an hour last night just calling out my name and wanting me to stand by her bed and rub her back. She would quickly fall back to sleep but as soon as I walked away she would call out for me again. It was a long night. She also needed a new diaper 4 times. Dad came at 8 this morning and around 9 she was awake enough to let him hold her so I got back to bed for about an hour. Mom has been sick since yesterday so she has had to stay away...we miss Gigi. Cynthia returned from her week in Colorado today and its nice to have her back. My dad will be heading to Indiana again this week to get some work done.

Our house is coming along slowly. We are hoping to get it done before we get discharged so we can go straight home instead of to the Condo. I would be overjoyed to go to our house and not the condo. I will go there if need be but to be at home would be ....I can't put into words how that would feel. oh well.

thanks to the Garners for the sweet card and pics of Jude (he's getting so big!), to the Rice's for Mr. Potato head and the glamour clothes, to the Spinetti's for the Polly Pocket and the visit (I loved meeting your sweet girl) and to Jill Piper for the generous gift.

Also thanks to Andy and Sonya for a great Friday night. James and I are both so thankful for friends like you guys. We know we will always have the best time with you and look forward to the next time. Have fun on your trip!!! Take pictures so we can pretend that we went too.


Blogger Jude's Mom said...

Happiness is...Popping on your blog and finding a new update! :) Listen, if I were you and Livi I would be the Queen of Cranky right now. Princess Livi is the Princess of Smiles & Cheer though, so I will pray away the crankiness.

We miss your whole family!

3:02 PM  
Anonymous grande aunt lisa said...

Dr. Allen is sick again? What's up with that? She must be meeting up with the same contagions as Marmie and me. I'll pray that she's back in the fold soon and that the Lil misses bit'o'crabbiness is but a temporary display and that all of the numbers jive. Safe travels to Pa and get back there pronto.

Mammoth luv, GAL

ps. Mr Potato Head rocks!

5:42 PM  
Anonymous Anonymous said...

Praying for Livi-- Always
P Miller

9:36 PM  
Anonymous Anonymous said...

Crabby and unhappy, who would'nt be under the circumstances? Poor little lambie-pie!! Hope and pray that healing will come quickly for the "cutest little girl". Are we too impatient for our prayers to be answered for good health? Trying to realize our time is not the same as God's time. Loving you dear ones, Marmie

11:26 PM  
Anonymous Anonymous said...

Praying for you -
Cathy S.

6:47 AM  
Anonymous beth said...

praying for you all the time...& always praying for lovely livi too... love you so much,

psalm 84:4-5
"Blessed are those who dwell in your house,
ever singing your praise! Selah
Blessed are those whose strength is in you..."

9:43 AM  
Anonymous Anonymous said...

I thought that Julie's comment said, "happiness is pooping on your blog"...had to read that a couple times!
We are praying and praying. Aksel still has major amounts of green snot, so I don't know when I can get up to Hershey. Hopefully, he will clear up soon. Otherwise, he is acting 100% normal.
As I read the days +44, etc. I just think of Noah on his ark for 40 days and 40 nights. I am sure you are anxious to get off this "boat" soon and see dry land and clear skies. We are praying to that end.
Love and miss you!

10:14 AM  
Blogger Bueche said...

As parents our greatest challenge is to represent Christ to our children. For some that is a challenge when it comes to being gracious, patient and enduring through discipline and character issues.

What is profound to me about your post, Emily, is that - no matter what time of day or night - when Livi is in distress she calls out your name and you are there; gentle, secure, tender and soothing. Isn't that just like our God? You are a living parable.

11:24 AM  
Anonymous tina said...

thinking of you guys today! xoxo

1:06 PM  

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