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 14, 2006

Friday Night

It feels like it was much more than a week ago that this whole thing started but last week at this time we were home on the couch watching a movie trying not to think about the next days blood test.

Today was an extremely busy day but not eventful news wise. My extended family arrived around 11...I think (my concept of time is completely off). My parents took care of Livi so I could take a nap this Am and so I was really unsure of the time all day. Marmie, Lisa, Pete and Maria were all very excited to see Alivia (what are we chopped liver...Just kidding) and they brought Alivia and I such sweet gifts. She loves getting presents. We said when we get to go home she is going to wonder where her gifts and mail are. Vic and April came to visit and also brought gifts... We are getting so spoiled. I can't tell you how much I love the company that each new person brings. Days fly by when there are people you love to care some of the burden. The my brothers sauntered in during lunch. I haven't seen Andrew since Christmas and I can say that it is good to all be together (even if the circumstances aren't good). The before dinner my sweet Rachel came (even though she got her wisdom teeth out 2 days ago...Very brave and wonderful). Then Bill and Cynthia arrived (they have been here each day this week and it means so much) and around 7:30 James came with John Chris and Will. We had a full house. I think Alivia is the most popular girl in this hospital. Or at least the most loved.

She had a great day. All vitals remained the same. Her chest X-ray showed everything is great there also. They were able to wean her off of one of the two antibiotics that she is on and lower her fluid to 20ml an hour instead of 50...Hopefully she won't soak her bed like she did twice last night.

The doctor came in with positive news. All the citogenetic tests from the Mayo Clinic came back negative. So that rules out most of the leukemias. One thing that he called a red herring was the fact that her Mono tests came back high and above average. He knows it is not mono but this info doesn't fit with anything they have. They still don't' know what she has. They are leaning towards a Syndrome that I can't spell right now because I am too tired. But it is something that isn't' seen in children. Dr's who treat it have never seen it in a child before. What this means for recovery and prognosis I don't' know. We will be in the hospital at least till late next week if not longer.

Please pray that all of her organ remain "Perfect". With a high white count like she has (the type that are high is called eocinaphils (phonetic spelling obviously) usually help fight germs (as much as I understand) and she has so many and there aren't any infections to fight off so they could start attacking her organs. If that happens they will be under the gun and have to start giving her drugs that they aren't sure of the side affects (since they haven't ever used them on a baby before). Also pray that our doctor will learn a lot this weekend but also get a lot of rest. He has some time off and said he would be reading up on the syndrome she possibly has. Also that there would be wisdom for the doctors whether or not to put in a port early next week. Her central line can only be in for 1 to 2 weeks or it will be infected and so they have to decide whether to put in a port (surgery) or stick her each time they need blood. Also if they go to put in the port they will do another bone marrow and a lymph node biopsy to see if that could more specifically diagnose anything. Also pray for strength for us. This have been a long long week and it is still going to be a long road.

Okay thanks for today
the Pete's for driving everyone to Hershey, bringing goodies, cards and smiles
Lisa for the dollar store finds that made our room so cute and made Livi smile
Marmie for being the sweetest grandma/great grandma anyone could wish for and for the card and gift that will be so helpful
My cousin Sarah for the pretty card, comfy clothes and good smelly lotion. and for the blanket you are making. Livi can wrap herself up in your love that way
Rachel for years and years and years of putting up with me. For driving her with a swollen mouth and still being so easy to talk to. and for the gifts that you thought to wrap individually so Alivia would have more to open. She loved it.
Vic and April for coming to visit, the super cute pic of the twins (who I can't wait to see when we come home)....the late night phone calls which keep me sane. April...I don't have another friend who I have gone through more with.
Cards from so many people and I will thank you all tomorrow but tonight my mind is starting to fail me.
I forgot to mention yesterday Thanks to Irene and Grace for coming to visit and bring magazines to read. Both Grace and Pete have come at moments of chaos and just been so sweet and caring. Thanks to all who are praying. We couldnt' get through this without all the words of encouragement.

Thanks most of all to my Heavenly Father who is leading my through this and holding me together when I have no strength to continue. And for knowing every single cell in Alivia's body and not being suprise by any of them.


Blogger Briana Almengor said...

I just finished the letter! Hope it gets to you soon and further encourages you. Soooo good to hear how well Livi is doing, and we will keep praying specifically for her organs to be protected and well and for her doctor.

Read this verse tonight; may it bring fresh faith in the knowledge and power of our God that is at work on Alivia's behalf.

"For the foolishness of God is wiser than man's wisdom, and the weakness of God is stronger than man's strength." I Cor. 1:25

12:18 AM  
Anonymous mrs.c said...

Happy Easter to You

"In Christ Alone"

In Christ alone my hope is found,

He is my light, my strength, my song;

This Cornerstone, this solid Ground,

Firm through the fiercest drought and storm.

What heights of love, what depths of peace,

When fears are stilled, when strivings cease!

My Comforter, my All in All,

Here in the love of Christ I stand.

In Christ alone! – who took on flesh,

Fullness of God in helpless babe!

This gift of love and righteousness,

Scorned by the ones He came to save:

‘Til on that cross as Jesus died,

The wrath of God was satisfied –

For every sin on Him was laid;

Here in the death of Christ I live.

There in the ground His body lay,

Light of the world by darkness slain:

Then bursting forth in glorious Day

Up from the grave He rose again!

And as He stands in victory

Sin’s curse has lost its grip on me,

For I am His and He is mine –

Bought with the precious blood of Christ.

No guilt in life, no fear in death,

This is the power of Christ in me;

From life’s first cry to final breath,

Jesus commands my destiny.

No power of hell, no scheme of man,

Can ever pluck me from His hand;

‘Til He returns or calls me home,

Here in the power of Christ I’ll stand!

by, Stuart Townend & Keith Getty 2001

12:24 AM  
Blogger sarah said...

So glad to hear that Alivia had such a great day, what a wonderful demonstration of the Lord's goodness amidst trial. We will continue to pray that the Lord would give wisdom to the doctors, as well that her little organs remain perfect. Know that there are many prayers going out for your family from our dear church family here at Grace Community in Souderton. Your example in trusting the Lord in ALL circumnstances and clinging to the cross in trial is so encouraging and an example to the work of Christ in your life. Thanks so much for these updates, it's so helpful and we love to have updates on ways to be praying!

Hope you (and Alivia!) get a great night's sleep.

Sarah Herr

12:25 AM  
Anonymous Anonymous said...

Sounds like yesterday was a full day! I bet it was wonderful to be surrounded by so many family and friends. And, I am so glad that you got a nap.
WE are still praying here. Good news about the Leukemia tests. I hope God is merciful and gives these docs the ability to diagnose whatever this is!!!
I hope you have a great weekend and I am going to try to get up next week...my inlaws are out of town, but I may trade babysitting with April so that each of us can come up and spend a day with you!!!

Take care! We love you! Happy EAster...be sure to go to the chapel...Mecca is calling!!! Oh, wait wrong one... be sure to make a right and you'll be in the right place for Easter!

Still praying for that miracle!!

Love, Les and family

9:38 AM  
Blogger Geoff & Karla said...

Hi James and Emily and Alivia. I have been reading your posts all week and am amazed at God's strength in your lives. “When I am weak He is Strong” I see God's strength in your lives.
James I am praying for your new project that started this week. I know how it is to start a critical project that needs your attention. I pray that it is going well during this eternally important time in your families lives.

“Lord thank you for watching over this family. Your hand is strong and your heart is loving. Please heal little Livi. I know that her parents love her and that you love her even more. You are a good God.”

Karla and I read your posts daily…or more! We set our home page to your blog.
Love Geoff (and Karla)

9:52 AM  
Anonymous Anonymous said...

Emily, James and Alivia,

Now that I am home, I don't know what to do with myself. I would much rather be with you guys. My greatest joy over the last 24 hours was seeing that little girl smile. I'm so glad it was happening frequently while we were there. Could never tire of it. We were blessed to come on a day when good things were happening and I am praying that's the way the road will continue. Thx for the pics. Love the one with Livi, Dave and mascot. Precious!

Will be waiting to hear more. Shout out if you need anything. Enjoy your outing if that happens and HAPPY EASTER!

Love, hugs, kisses

(Aunt) Lisa

4:36 PM  

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