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.

Wednesday, April 12, 2006

Sum up

Today has been a faith building day from beginning to end. I think we all needed a day like today. it started with her sitting up when I came to see her first thing, to getting all the tubes (except the central line) taken off, to giving her a bottle, to getting a new room when we hated the first room, to talking to the doctor. Yea he had almost good news. Not a definetly but they are 2 steps closer to ruling out the worst kind (JMML). They did two more tests that made us one step closer to ruling it out. Not completely out yet but still, we'll take anything at this point. the rushed a blood sample off to the University of Alabama and the University of California were the lead doctors on JMML are located. They will run one more test and if that is negative then it will be ruled out completely. We also ruled out CML pretty completely. All preliminary tests came back negative for CML. So we are down to the rarest ones on the list. And they are back to testing for parasites again. they said it was off the list but now its back.....who knows. We would be so happy to rule out JMML completely but that test takes a few weeks. Regardless God has been so gracious and kind to us today. We are overwhelmed (in a good way). We serve a powerful, merciful God...I may have to come back and read this post when the chemo starts. But I pray I will be able to continue to trust in Him.

Our only low note was that Livi's white blood cell count went back up to 120 today. We came to the hospital at almost 200 and got down quickly to 71. But today it started to go up again. It would be wonderful if it would come down again. the higher it gets the closer we get to forisis (spelling). So pray that it stays the same or even better comes down. The needle that they would have to use for forisis is much bigger than the needle that her body could handle so it would be really bad. and she would probably have to be intubated again. Not what we want. If you are praying that is a huge request. And the test results are another.

All of your words build us up so much. James is sitting at the computer beside me reading all the posts from the last few days. He thanks you all too.

Here are some more thanks for the day... Dinner was great Ang thanks! We all were in such a good mood too that we all ate the most we've eaten in days. It will surely give us extra strength for the days to come. Thanks for visiting Ang, Dwayne and Tina, Anya, Bill and Cynthia, William, Jeremy Landis, Caleb Lewis, Andy and Sonya, Jess, Bev, and Amy K. thanks for the mags, HAND LOTION!!! and cookies (Jess), the daily verses (Bev), the flip-flops (Anya) and the basket of goodies, book and puzzle (everyone has gotten a good laugh from the sound a guinea pig) (Amy)

Another huge blessing we are slowly learning about is called the 4 diamond fund. If Livi is diagnosed with leukemia then it kicks in instantly without us applying or anything. It will pay for all medical bills that insurance doesn't cover, it gives us meal vouchers, gas cards and phone cards. We got our first phone card today. We just feel like we are in the best place possible for us. What a blessing to have this hospital so close to home.


Blogger Briana Almengor said...

Many mercies showering down from Heaven. How comforting to hear of His care for ya'll!

Good idea to "bookmark" tonights blog post in order to come back to. I still have two notes written to me right after the boys were born. They sit at my bedside to this day and I pick them up and read them from time to time for fresh perspective and faith. One is from a dear friend, my pastor's wife, and one is from an almost stranger, mother of a friend type deal....you never know who God will use, but He will be faithful to provide ALL that you need.

And, the spelling is "flouresis". The only reason I know this is due to a friend we met at Hopkins who had a kidney transplant...LONG story that I would be delighted to share with you some day when you need a boost of faith! His story is incredible!!

Love you much! SLEEP!

10:49 PM  
Anonymous Anonymous said...

Did they test for mono? Seriously, I know a person who was in the hospital when she was little and they said leukemia and it turned out to be mono! They don't always test little babies for mono but it makes the spleen enlarge and some of the other symptoms are just like leukemia.

10:58 PM  
Anonymous Anonymous said...

A good day, considering the circumstances.
You must be exhausted. I hope that you can rest well tonite and I hope tomorrow brings some more answers.
I can't wait to see you tomorrow!
We are praying.
Love, Les and fam

ps- Eden was praying for you tonite and she said, "Lord pray for Alivia's mommy, she is really crying!" It amazing how she knows at age 2 the intensity of this situation for you. Out of the mouth of babes......

11:30 PM  
Anonymous Anonymous said...

Oh yeah, Jeff's nephew still gets help from 4 diamonds...he had hearing loss after Leukemia...they pay for all of his hearing aids, etc. That's great!!!!!

11:32 PM  
Anonymous Anonymous said...

Emily and James,

What an amazing day you had today! I was ecstatic to hear all the joys of the day... finding her upright first thing, to holding, feeding and rocking her, and now a room with scenery. God never stops caring for the "little" things in life.

We are leaving for a couple of days and are praying the hotel has internet access for patrons. Your blog has helped us to feel more connected and better equipped to pray for all.

May God continue to shower you with new blessings and mercies everday Emily. We will continue to pray for wisdom for the doctors, healing for Alivia, and strength for you and James.

Love to you all,
Lynn (for the tribe)

Gretchen... we are leaving to go out of town Thursday and will return Monday. If you have family members who want to visit and need housing, have them contact the Haughery's to use the house.

12:42 AM  
Anonymous Anonymous said...

Hi James and Emily,
Just a quick note to let you know that we are praying for you guys! In the midst of wedding planning and a busy season of life, your family and Alivias condition have been at the forfront of our prayers. Emily, I have been very encouraged from reading what you've been writing (I just came across your blog last night). You are a women of incredible faith and my prayer this morning is that the Lord would continue to give you faith even at times when you feel faithless! We serve in incredible God who is gracious and always working on our behalf. May you feel the love of the Lord this morning and may it sustain you through today.
Matt and Kim (Kreider, soon to be Randolph)

7:33 AM  
Anonymous Anonymous said...

Emily and James -
We had a day of medical prodding and probing for our 9 year old, Isaac today. Giving blood, XRays, a joint needle aspiration, waiting rooms etc. In it, we fought complaint and doubt. We were impatient. When we reflect, we realize how much more difficult your road has been. In a small way, we understand better today, and can pray more effectively for you. More importantly, we have an advocate, a mediator, who understands our deepest struggles better than even we do. May you know great rest in His Grace this day.
Keith and Christine Lewis

10:00 PM  

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