Today is Reese’s second day with neutrophils over 500! (They are 880!) One more day and we have ENGRAFTMENT!
It is also our 25th day inpatient in the hospital. Today Reese asked me, “Why do you and daddy get to go out that door and I don’t?” She is referring to our hospital room door, that she has only been allowed to walk through twice, to the playroom, our first week here in April. That’s a tough one for a child to understand, but I do believe that time blurs here, which is a blessing. I realized midday that I also hadn’t left the hospital in a week, so I took a walk to get a little vitamin D and clear my head. I wish she could do the same… soon. Thoughts on VOD- The doctors sent us to the ICU on Monday to get two additional central lines (PICC) in anticipation of something. Something they believed was imminent. Then they kept us there, for something that couldn’t be handled on the BMT floor, something that was ICU worthy. And it never happened. Reese instead got better. God is watching, I know that he is protecting my little girl. He sent us to the doctors who know how to care for JMML and God interceded when things got scary. We are blessed beyond any words that I can think of and I am in awe. It is a joy to watch Reese improve. Today she sat up- on her own -and played hospital bingo (she hasn’t been able to do this in a week! Big celebrations over here!) She also had her first bite of food in just as long. I bet you are thinking something healthy and off the BRAT diet, aren’t you? Nope……… M&Ms!! I know, she saw them and asked for them and her nurse did not mind a bit. Well, you have to start somewhere!! This little fighter can have whatever she wants. Today was a WIN! grow cells, grow!