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.Still at the Hospital
We are currently getting a transfusion. Livi feel asleep and I decided to head to the 7th floor to write a blog. Its been a while since I've been up here and I can't wait to leave.
All of Alivia's counts went the wrong direction again! Her WBC's are up to 117. We are getting a red cell transfusion (the 3 hour kind) because they want to keep her Hemaglobin above 8 so that her heart isn't taxed. the only good number was that of her liver. It went almost back to normal. So that means we can up to dose of Gleevec with hopes that she will start to respond. If not they will add the hydroxyurea back. Not looking forward to that. Could mean more transfusions or maybe less. Uncharted waters according to our doctor.
We asked a few prelim questions about transplant and he said the goal was to do it in the next month or two. which might mean we get to do Christmas at home! That my friends would be unbelievable. I can't even imagine how much that would mean. He said that they dont' want to wait a year to do it but we've waited this long and as long as everything continues to go well we might get to wait. I'm trying not to get to excited. Only a might not a definete. But nothing is set in stone in our lives right now.
For those who live in Lancaster please tune into WGAL channel 8 news between 5 and 6 because we will be on it! they came to our house last night and taped a little story. Crazy. Guess we're officially "those people" with a sick kid now. each things makes it a little more real. If anyone can tape it please do. James is going to try to get home in time but we'll still be at the hospital and we really want to see it. I would rather have 20 copies than none. Thanks.
My brother Andrew got here safely from North Carolina this AM and my brother Aaron is on the road as I type. The whole fam in one place! Love it. I will post some pictures. This weekend is going to be so busy with the drive so I probably won't post more than a few snap shots. but I will give a huge update after the drive. hope to see all of you there.
posted by Alivia's Momma @ 3:44 PM
6 Comments:
Saw you on the news! What great coverage!!! I hadn't read your blog, my mom called and told me you were on. I admit it, I cried. I was just really touched that they would cover your story and wondered how many people might come out on Sunday that otherwise wouldn't have. We will be there!
We are praying and we love you!
Julie
Emily,
If you don't get a tape from the news, try checking out the WGAL website tomorrow. They have lots of videos and it just might be on there.
Sorry I missed it, but we continue on in prayer.
Pat
Thinking of you! Praying for a great turnout this weekend. Praying, praying, praying.
Saw you on the news..April called to tell me as I wasnt on the blog in a few days. I thought it was a great piece...I, too, cried. You guys continue to amaze me in your awesome and steadfast example of true faith. We are praying constantly....When we watched Gabe yelled and pointed to the screen and said "Mommy....It's Baby Livi." We are privileged to pray for your little one...and we will continue to....
The Parmer Clan
Hey Emily:
We got the bracelets tonight. The girls had fun putting them on. My younger daughter said, "Alivia's my favorite girl!" I had to laugh because she has never met her, but loves that picture of her pointing at the camera that pops up everytime the blog comes up on the computer...also, she was also referring to the fact that her brother Keaton is her "favorite boy". What a hoot....
I will be sending the order form from bible study and the check in the next couple of days.
You all hang in there and I will be praying for a great turn-out on Sunday at the marrow drive.
Love,
Caroline
Hey, can someone give us the URL for the WGAL website? We want to see too! Aunt Cheryl in NY
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