Feb 21, 2016 (Sara)

Today was pretty stressful for me. As Scott mentioned, she didn’t really eat and even with her transfusion yesterday, her hemoglobin only bounced up to 7.7. The increase is a normal increase I was just hoping she wasn’t actually as low as she was yesterday. There was a chance that the blood draw could have been diluted a bit. Nope. SHe was very low which means she was still pretty low today. Her platelets are way down too (at 17 today). She’ll need a transfusion before her next lumbar puncture for sure but if it drops below 10, she’ll get one sooner. Her WBC are now closing in on zero. They were 0.8 this morning. I asked the doctor today if we will take her home this neutropenic (with such low WBC)…the answer is yes. Seriously freaks me out.

I spent my day tending to Maya. The majority of my time was spent with Maya and trying to either get her to eat or put a smile on her face. Maya finally perked up a bit after she scarfed her dinner. She had her wipe down bath and played with Grandma on the window sill.

Later a very nice gentleman came in to empty the trash cans. He made us all laugh more than we have laughed in long time and his humor lifted us up. Maya was playing with a pink sparkly bracelet and he said “girl girl girl…I have three grand daughters so I KNOW”. Then he went on with a story about when his daughters grew up and no longer wanted to have Friday night outings with him. Now he has grandchildren and he loves the adventures he gets with them…and he especially likes that he gets to drop em off back at home when the day is over. He said “oh yeah, I take em to the carnival. They get popcorn, pizza, candy….I send em home STICKY!” We laughed pretty hard.

Then he talked about how he gets to have all 5 of his grand kids this summer. He said “you know what Imma need…a hundred pack of hot dogs. And NyQuil…you know in case I got sumthin’ to do!” We giggled. I told him…” you might need the Costco pack”. Then he pretended to be a kid…a kid asking for more NyQuil  “mom…caaaan I…ummm…you gott sum more of that stuff?” He laughed out loud and said “They gunna go home widda HABIT!!!” I almost peed a little. It felt so good to laugh. I hope I get to see him again so I thank him for the laugh.