Update for today - Brinley is close to being released, it still looks like today. They want to get her Ara-C chemo first, and they can't do it until 4 because Brinley had it late last night. Our home health nurse can't come do it until 7:30 tonight, and they didn't want it that late, so we just have to wait at the hospital to get it. I'm a little concerned because her heartrate is still really high, and has been the entire stay. It's normally around 110, and it's been between 140-160 the whole time she's been there. They had to turn off the monitor the first day we got there, because it kept beeping the alarm for a high heartrate. The doctors said today that it indicated her body is still working hard to fight something, whatever it is, maybe the lung thing. It makes me nervous, but she really is acting okay, and is so much better than when we first brought her in, so I know she's fine to come home. I just can't believe how quickly that came on. It made me realize how grateful I am to be so close to the hospital. I will always be nervous to travel with her until this treatment is done.

Taylor is doing good in St. George, she has Huenu to take good care of her, however I am feeling so bad to not be there. The part that was the most sad to me is how she reacted to the news. We had plans that night to go to the open house at the new temple here. So it was a double whammy when I told her I couldn't go to that with her AND neither of us could go to her tournament this weekend. But instead of crying, or complaining, she just say "okay, that's fine". I wanted to scream "NO IT ISN'T OKAY! DON'T YOU SAY THAT! THIS IS NOT OKAY! YOU SHOULD BE SAD AND DISAPPOINTED AND CRY AND COMPLAIN! YOU DESERVE TO HAVE A PARENT AT YOUR SOCCER TOURNAMENT! YOU DESERVE TO GO WITH ME TO THE TEMPLE!!" But she says okay mom. I cry when I think of that. Is she that used to being disappointed that is doesn't phase her any more? When I think about the make a wish trip we will get later, I keep thinking how much ALL of my kids deserve that. I understand why they pay for the whole family, because the whole family suffers. I can't wait for that trip!

2 comments:

JohnH said...

Make a Wish trip? I wondered if that would be available to you. That's cool. Do tell more!

Ashley said...

Yea for MAW!!! My friend is going to Disney World with them. Do you know when and where you get to go?