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.