Friday, April 12, 2013

Hero Package & Update

I've taken a little too long to update about this, but remember that little fundraising thing we were doing, where we needed to raise $650 to get Emma a "Hero's Package" from Gamerosity? just over 24 hours, everyone had donated enough to reach that goal!!  We were shocked.  I like to believe that we might have broke a record there for the fastest fundraising...hehe.  The Gamerosity guy called it "Radical generosity".

I have no idea who donated, but if you did (or wanted to, Rachel A!), thank you so much!!  Seriously, I don't even know how to tell you how appreciative we are of your generosity and help.  We'll post pics when she gets it.  We know she'll love it and it'll make a miserable experience a little brighter.  THANK YOU!

Speaking of Emma...

We still don't know if the other two potential donors are a match.  Hopefully we'll know soon.  We did find out from a lovely friend (Jennifer, thank you!) that 9/10 is a great match.  They used to do a transplant with only 6/6 matches.  So, 9/10 is great.  Of course, we still want the 10/10, but we for sure have options with the 9/10.

Emma seems to be progressing a bit with her failure.  She is noticeably more pale and looks tired a lot.  She's very stationary, but she still feels like she has energy...unless she starts being active.  She is cheerful for the most part, is doing great with her school work (though she does get tired out), and is obsessed with Legos.  She spent like six hours putting together Lego houses and made a little neighborhood with cars and an airplane.  She was following the directions on how to build stuff, which isn't a norm for her to pay attention to building instructions.  It was fun to see her learning...and see her enjoy it so much!

Before we started her on the androgens, she used to be an awful eater. Then we started her on the androgens, and she turned into a ravenous pig that loved everything and would eat tons.  It's been really nice!

Yesterday she couldn't eat much breakfast, ate a small sandwich for lunch, then no dinner.  This morning she ate breakfast, but she couldn't eat any lunch (and she likes it usually).  She didn't eat one bite.  She's not being rebellious.  It's more like it is making her physically ill to think of eating.  It's beginning to stress us a bit to see her skinny little self not eating.  We'll try smoothies, and then ensure, or something, if we have to.

Tonight for dinner, we were really hoping she would eat.  She said the prayer and said, "Please bless my mouth that food will taste good again."  Then when she was done with the prayer, she said, "I think that might help."  Then she paused and corrected herself with, "No, I know it will help."

I smiled to myself and thought, Welllll...if this is part of getting more sick, I'm not sure food is going to taste better!  Then I stopped myself from thinking that and remembered that God does bless for having faith, and Emma has amazing faith.

About 10 seconds after she prayed, she took a bite of her dinner, and said, "Oh, this is good!"  and she ate a ton of food....hehe.  It made me giggle.  Hopefully it'll keep up, but if not, we'll figure something out.


And, lastly, here is a portrait Rhys drew of me.  Isn't it beautiful?  haha!

Rhys is two years old.  At this age, she should mostly only be able to scribble.  Closer to 3 yrs, she should be drawing little circles but not anything like this (for average 2 yr olds - for all my other kids when they were 2 yr olds).  We noticed around the age of 24 months that she was a bit advanced with drawing (and with scissor usage since she chopped all her hair off the top of her head!).  She was drawing circles and seemed to have an odd amount of control with drawing at just 24 months.  Anyway, so it's fun seeing her drawing things like this.

I know I have a unibrow in the drawing, but she wasn't finished yet.  My unibrow turned into a forehead wrinke.  She ended up adding an eyebrow above each eye and writing "m" on my forehead wrinkle.  I'm impressed by her placement of everything and that her circles are controlled and match in size...and I'm going into far too much detail.

When Emma saw it, her mouth fell open in complete shock.  It was so funny!  So, Rhys drew another one on the other side of the chalkboard.  It looked very similar.'ll be fun to see if she ends up being a little artist or not.  (and, she is left handed, which is fun!!)

Okay, I should go to bed.  I've been doing so good at getting to bed on time this week.  But not tonight!

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