4 months, 2 weeks, 5 days since diagnosis
day #32 of current hospital stay
Today, Valentine had a small surprise birthday party with my in laws. I can't believe I'm missing so much but I am so blessed to have family and friends willing to ensure that Valentine is so well cared for while I'm away.
When her aunt pointed to the site they took bone marrow from and asked her what happened to her back today, Valentine said, "Oh, I'm just saving my Riker." (Those that know Valentine, I'm sure, can just hear her say that.) So her aunt asked her if that makes her a hero. Valentine then looked up at her aunt very serious-like and said, "Yup. I guess I am!" I am telling you guys, Valentine is growing up 10x as fast while I'm down here in Boston!!
Her birthday is a week from today and she'll be 3. I have no idea what will be happening with Riker at that time or where I'll be. I am trying really hard to focus on what's important and not sweat the small things. As long as we do something small as a family, it doesn't matter where or what it is. I so badly wanted to bring the girls trick or treating, though... it's Valentine's favorite thing to do all year long. She talks about last year like it was yesterday.
Riker continues to be stable and not much will change day by day at this point. We still haven't really weaned her down on any of her meds - I think we may try again tomorrow. The mucus in Riker's mouth and throat is still very thick and causes her to throw up pretty frequently. I'm hoping that lets up in a day or two. I still have been unable to get Riker to take a bottle. I am hoping that will be easier after the mucus clears up.
I have started to pay closer attention to the "little things" like Riker's weight. It seems she's still up 2 or 3 lbs in fluid. She smaller than she was but she's still way up from what she was when she was admitted. Since she hasn't taken much food since then, she probably hasn't actually grown much since then, either. I'm watching for her to come back down to her normal weight.