8/18/18 BMT Day +108 Bananas

Amazing news!!!
Reese had a really good day. That’s not to say there weren’t moments I’d like to take away… but SO MUCH is going right! I have the song Champion in my head… not Queen (but that’s a great one, too) the Carrie Underwood song.
I am invincible, unbreakable
Unstoppable, unshakeable
They knock me down, I get up again

So many things are going right, right now. I need to stop, breathe, appreciate it, and tell you about it! I’d love to also have a glass of wine to celebrate- believe me. Who will join me for a nice, light red? Or bubbles? My little girl is getting BETTER!

Tonight Reese went to bed with a “normal” heart rate and blood pressure! She is on so many meds to control this, and tonight, they are working. What else is working? Her steroid wean!! We went down two times this week and it went so well that the doctors plan to go down twice a week now, on Sundays and Thursdays. This is incredible, and it means that right here, right now, Reese’s GVHD is under control!! This seemed so unobtainable a month ago, even two weeks ago, I barely dared to think about it. Her feeds are still being figured out, but we are making progress and we have a plan in place that seems to be working!

BANANAS. This is what Reese ate for dinner! My little girl has a whole “menu” now. And once she has something one time with success, she can continue to eat it in small amounts each day. Tomorrow she can have some banana for breakfast, applesauce for lunch, and soup and a cracker for dinner, should she choose. Yes. Choice. The power of choice. The average little kid makes about 3,000 choices a day. GVHD and other complications (and hospital life in general) took this away from Reese, and Reese is a strong little girl. Have I mentioned that she is our alpha? Reese likes to call the shots, and others listen, she has that. So now, the magnificent ability to choose something in her little world, to control even moments, is empowering and healing.

There are still things to worry about, things to make me too nervous to fall asleep and cloud my dreams and rest. But there are also great things happening, and today I end this post here. I believe that a grateful heart is a healing heart and I also believe I should put out to the world at least as much good as I receive. And I am receiving good. I am thanking God and my doctors for the miracle they are working on my little girl! We are blessed.

Go sweet and powerful Reese, onward and upward!

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