Cleveland news, and then on to something else.

So the news from Cleveland Clinic was that her tyrptaste level was normal (4.something ,with above 11 being abnormal, and above 20 being systemic masto-I think).  She also did not have the c-kit mutation.  This means, no bone marrow biopsy (woo hoo), she will likely outgrow it (woo hoo), and we still can't be sure if belly stuff is masto related or not.  The doctor was still waiting on the slides from her tumor that was removed in April, and will call us back after he gets those and is able to put some more puzzle pieces together.  We mostly are just elated for some good news.

Moving on....

Saturdays, in our house, usually consist of someone getting up with Abigail to take her potty, and then all three of us hanging out in our bed to be silly for a while.  This morning was no different.  Abigail steam rolled us, she tried to steal Papa's pillow, she gave me a couple accidental elbows to the kidneys.  She also went and got a book to read to me.  It's an old book, and a very simple one called 'My Red Umbrella.'  The premise of the book is that a little girl has an umbrella, it begins to rain, all the animals come under it with her.  It stops raining and they all leave.  Boring really.  So Abigail reads it to me today.  She started with 'Once upon a time,'  which is funny since we haven't read fairy tales, we don't do Disney movies, and I am unsure of where it came from.  None the less I was giggling while she layed there reading it to me very seriously.  The conversation that ensued afterwards though, was the icing on the cake.

Abigail-'Mama dere's a owl in dis book.  Hew, I find it and show it to you.  You hab to be caweful of owls.'

Me-'You have to be careful of owls?  Why do you have to be careful of them?'

A-'Well a owl came and took my eye off.  He took my umbwella too.'

M-'Oh my.  What did you do?'

A-'I asked him nicewy to gib it back.  He did.  I put my eye back on, and him gabe me my umbwella too.'

I really love my daughter and her imagination.  I am looking forward to all the upcoming stories that are forming in that little brain of hers.

Be careful of owls,

How do I say thank you?

Around this time last year I took Abigail potty one day and noticed a dark area on her right leg. I immediately asked Jason if he had ever noticed it before and he said he wasn't sure. So I filed it away under 'things to keep an eye on.' And keep an eye I did. When a small mass turned up underneath the area I felt like I knew what we were dealing with. And when we started seeing pain and itching, I knew before we ever even made that drive to have an MRI done that there was a tumor in my daughter's leg. This is the nature of NF.
And this year, well, things are different. Do I still worry from time to time that she has a tumor somewhere? Absolutely. I sometimes feel like I am just holding my breath and waiting for the world to be rocked again. But I also feel grateful.
I have tried over and over and over again to write a beautiful heartfelt thank you to everyone who donated money, posted our badge on their blog, and posted and re-posted the fundraiser for Abigail's surgery on facebook. But I can't ever quite find the right words to portray how I feel. I doubt that this blog post will even really come close to giving you a glimpse of how thankful I am. But I am going to try.
In a week and a half my little girl will turn three. Imagine, if you will, gearing up for your child's birthday. It is a time filled with joy, excitement, remembering and recounting the past. Then imagine knowing that inside of that same child you are celebrating is something small, that is growing, and has the possibility of robbing your child of walking, running, dancing, climbing, and even life under some circumstances. Despite the festivities, and even the smile you put on your face, there is a shadow of fear that covers over the celebration. This was where we were last year. We had not yet had the MRI confirm the tumor, but we knew.
One year later, our daughter's body has a beautiful scar to remind me of the second chance she was given. Sometimes I wonder if she will grow to think the scar is ugly or unattractive. To me though, it speaks loudly of other people's generosity and love that they poured out. It tells of a God who cares so much for His children that He would move the hearts of people all over the world to make certain a little girl is given a chance to enjoy being a child. It tells the story of how our daughter, doomed to 'wait and see' if her tumor grows larger and an unknown outcome, given the gift of a surgery, paid for completely by friends, acquaintances, and more so, strangers.
So thank you. Your gifts mean more to me than I can put into words here. I will leave you with a video of Abigail dancing at church on Sunday. I'm not certain that there is a Sunday that passes where her being able to dance escapes my mind as nothing less than the beautiful miracle it is.




The other little girl you see a lot of is Abigail's best friend 'Ednie.' Yes, the aisles at church are pretty much filled with little kids dancing every week, and yes, my daughter raises her hands to worship a few times in the video. :)

Thanks so much to all of you who posted about her surgery, donated, prayed, and walked through all of this with us.