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.

Thursday, May 04, 2006

Drained

You would think that a day of waiting wouldn't be that big of a deal but it is. Every once of strength is put into the waiting, entertaining and calming the baby. And watching her cry and be stuck and scream because she is scared and confused. I am with her on the scared and confused. We learned not much new today. Her white count was up to 180, reds up to 97 and platelettes down to 54 (not dangerous but not good). He thinks the rash on her legs is from the antibiotic so we are stopping that (her ears are fine anyway). He did say that it was a bit more rash than they usually see with an antibiotic reaction but we'll see if it clears up. She also has what looks like dry skin on her face and around where her collar would be and he thinks that is from the sunscreen I used the other day (those are the only 2 places I put it). With both we have to watch them (oh goodie more to look for) and see if they get better. If not then we will have to get a skin biopsy by a dermatologist.

We are going for a surgical consult next Wednesday to schedule a bone marrow biopsy, lymph node biopsy (she has 2 new ones under her arm) and possible a liver biopsy. He also got in touch with a Dr. at Children's of Pittsburgh and that doc said that he should rule out ALL infectious diseases and parasites before diagnosising. This is hard to do in a baby though since it take a lot of blood to test for each disease and obviously she doens't have a lot to offer. So they have to start ruling them out as they can. Also they expect the final test results in regard to JMML tomorrow (from Alabama). He will either call tomorrow or Monday with the results.

So more waiting.

Here are the prayer requests....
Wisdom for the doctors. (especially Dr. Powell)
No signs of distress
Results from Alabama to be negative!!!!
Both the rash and the dry skin to clear up quickly.
plateletts increase (otherwise they will have to transfuse before the biopsies... In that case I hope we have enough time between the consult and the surgery for people we know to donate so she can use their blood!)
Peace for us. We are tired and drained and need a boost. I keep hopeing for some good news. Instead its either bad or just the same. Good news would be so nice.

Thanks for today
My parents for driving here last night just to go to the DR. visit today and then going back home.
Cynthia for going with us today.
Dinner from Christine Lewis and Kathey Booker (now I don't have to cook tomorrow either)
Cards from Marmie (the greatest grandma that a girl could ask for....I love you Marmie!), my Aunt Marie and fam and the card and gift from the Lutheren Ladies Aid Society. I don't know who you are but what a blessing. Thank you so much.

9 Comments:

Anonymous Anonymous said...

Emily, James and Livi...our hearts ache so for you. I wanted to scream on the turnpike...turn around we are going the wrong way!!! But you are on our thoughts and hearts continuously, whether waking or sleeping. As Psalm 27:13 says, (the one James brought to the hospital on the first day)"we will wait for the Lord in the land of the living." We are waiting on you, Lord. Please don't tarry. Gigi

8:54 PM  
Anonymous Anonymous said...

Hi, Emily -
I just want you to know that you and all your family continue to be in my thoughts and prayers. I hope you will be able to rest tonight after such an exhausting and stressful day. I pray for wisdom for the doctors. Lots of love is being sent your way. May God hold you in His Hands -
Cathy S.

9:07 PM  
Anonymous Anonymous said...

Hello Emily,
I will continue to pray for you all that you are able to experience God's peace in the midst of this uncertain time...
Love,
Audrey Drago
"Be still and know that I am God"
Psalm 46:10

9:27 PM  
Anonymous jesse wells said...

Hey guys,

Well i would most definitely agree that you have one of the finest looking lawns in all of Lititz. We love you three so much and thank God for putting you in our lives.
lyndon and jamie

9:32 PM  
Anonymous oprah winfrey said...

well i haven't seen the lawn but i trust it's a beauty. and who is jesse wells? just wanted you to know i'm praying for you three tonight!
muchas love, kb

10:05 PM  
Anonymous Randy Palmatier said...

James, Emily and Livi, I have been monitoring the blog from day one so I can update my family and Friday morning men's prayer group. You have all been very much in our prayers. I can emphathize with Livi and all the testing, poking and examining but my heart also goes out to you as parents having to watch it happen to your precious baby....Randy P.

10:08 PM  
Blogger All the Millens said...

To sweet Livi and her mommy and daddy, we are with the many others who appeal to God on your behalf in faith that "The eyes of the Lord are toward the righteous and his ears toward their cry." Ps 34:15

Thinking of you....Katherine

10:34 PM  
Blogger Briana Almengor said...

I'm empathizing w/ your weariness, my friend! Wish I could just be sitting on your couch or wherever you read your blog, giving you a big hug. Praying that the waiting will not be agonizing for you, James and your families, that somehow through this, you will experience the sweetness of sharing in the sufferings of Christ, and that the peace of God will guard your hearts and minds in Christ Jesus. I'll be praying in agreement with all the specific things you noted as well.

Love you much, friend!

10:51 PM  
Anonymous Anonymous said...

James, Emily and Alivia,
Just wanted you to know that we are grateful that you continue update us and give us specific prayer requests. We will continue to pray for healing and for wisdom for both of you and the docs. Hope you all are able to sleep well tonight. Thinking of you...

Kendra

11:31 PM  

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