Nausea continues to plague Reese, though not nearly at the level it did last week, but enough to make her have fear. We want this to stop. Not only because it is miserable to throw up and feel nauseous, but also because it is creating fear in her head. Fear of trying new foods, fear of eating too much. Because we can not answer, why? this is happening, we can’t explain it to her either. So she is becoming afraid to put food in. Reese, who loves soup and celebrates new food with parties! I pray for guidance for our doctors, so we can solve this mystery quickly and get my little girl back on the right track. Eating means eliminating TPN.. this is huge! TPN is huring her, a human was not meant to survive on nutrition through their veins. We are doing another calorie count Wed and Thu this week. GI is also going to run a few tests (not a scope!!) to try to get to the bottom of this.
Reese’s mutation test is due back any minute. I wake up thinking about this test, and I go to bed thinking about this test. It was NEGATIVE last time, we need it to stay this way. Please God, protect my little girl from the beast that is JMML, and continue to keep her safe.
Yesterday, Reese and Nonnie decided to count the unicorns in Reese’s room (see sweet picture below.) I bet you can’t guess? I’ll tell you, Reese has 51 unicorns in her very pink, very girly room. Nonnie and Reese celebrated her “pink” morning with giggles and fun. How lucky is my little patient, to have Nonnie here, by her side, day in and day out. There are blessings all around us, God is good. I have read a lot lately about God giving you what you can handle, and then being there to support you, when you waiver or lose hope. God gave me great parents to support me, so that I can be the best mom I can be. I know that I am passing on this unconditional love. My parents have ALWAYS demonstrated unending devotion and a complete lack of selfishness. I pray that I am passing this to my own children, so I can continue this beautiful cycle. And someday, when Reese cares for her own children, she will know that it is just how it is supposed to be. She won’t know any different (and how my grandchildren will benefit from all of this love!)