8/6/18 BMT Day +96 Reflux

My little girl is back, in so many ways. Her clever, dry sense of humor (lovingly called Reese-isms) have returned and I have reveled in every moment that I get to see her again. I missed her SO MUCH!
A lot has happened since I wrote. Reese’s weight jumped over night and so did her belly distention and pain. Immediately all feeds were stopped and she didn’t have anything by mouth. Now she has reflux… her swollen and injured gut won’t let things through. She says things like, “Why do I taste the medicine???” when it is put into her NG tube directly into her stomach. So a bunch of meds were switched and now we are trying to do things to get her gut moving (kind of the exact opposite of the past couple months.) Reese’s blood pressure continues to climb (from the steroids) and she needs more medicine to control it and her insulin has been all over the place, constant drama (also from the steroids.) Her pain is consistent and at times overpowering and impervious to opioids. That hasn’t changed, it is a little worse, and I pray it will stop. Her gut is raw and it needs to heal.

Now, what is Reese celebrating this week? There’s so much, I will make a list..

  1. Reese’s personality is back, she is healthy enough to be… herself!
  2. Reese is strong. She regularly walks to her “store” and sits up without help.
  3. The steroid wean is going well! She went down another 10% to 1.6 yesterday. This is HUGE.
  4. Reese does not, and has not, had any weird infections from steroid use. Thank god, this is a blessing.

Reese and I created a pain chart that we visit throughout the day. It is color coded from her least favorite colors (she hates black and thinks I am crazy for wearing black yoga pants all the time…) to her most favorite color, (yep, pink.) Black means “crying pain” and pink means “it’s time to party” and then everything in-between. Sadly, most of Reese’s day is spent in the dark colors of her chart. But today, she spent a good portion of the morning in “PINK”, playing with me.

Many of you have sent Reese amazing presents, and these “5 minutes of joy” presents arrive every day and it is making such a difference in her life. Thank you!!! If you have not received a thank you from me in some way, it is possible that a name was not included with your gift. It actually happens quite a bit. Please let me know and please know that we are SO APPRECIATIVE!!

It is so painful for me to share the last piece of news. I will ask you here to join me in prayer for a special little boy. His name is Flynn and he is battling JMML with Reese, across the world, in Australia. After having a 100% chimerism and being mutation free, his mutation is back. I follow his page on Facebook, which is where I learned of this news. His mom and I have become friends, sharing battle stories and support and love. My heart is aching. Please join me tonight to not only pray for Reese’s safe recovery, but for Flynn and his family and wisdom for his doctors. Amen.

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