Her white blood cells held overnight! It isn’t many but they are coming in and they are from Micayah’s cells. So she is finally starting to grow those cells! During rounds her dr said, “I’ll cut to the chase. She has sluggish cells but she is ok. They are neutrophils and monocytes. She has very few lymphs. We want that.” Then we all joked about the irony of such an active kid having sluggish cells. On the manual differentiation, which I requested yesterday and saw for the first time today, we counted a WBC count of 100 and ANC of 65. It isn’t much but it is a good start!
When we arrived today she was awake and dressed. She hasn’t texted for a few days when she wakes in the morning. She said she was letting us sleep. Ha! Sleep isn’t something I do well right now. As I type this it is almost 5am. I’ve slept since about 11:30pm and will likely get another hour of sleep after typing this. But my mind works well to type this all up while waiting for lab results. Naomi gets her blood draws at 4am. Then results are usually back around 5-6am. I am intuitively set to wake around this time and wonder and wait for results. It will change in a few days when she is released. I look forward to that very much!
We are in Green Bay territory. On Friday, having had all my wet laundry hanging, I wore Aaron’s Denver Broncos shirt. I wore a zipper jacket to cover it initially but got warm and took that jacket off. I have not seen a single football shirt except the Packers while here. I was quite conscious of that!
Her Dr looked at it and made a comment about the Broncos. I told him that my shirt would actually be Steelers but that all my laundry is hanging to dry and I was wearing Aaron’s shirt. He said he could respect the Steelers but not that shirt.
So then this morning while we were all there for rounds, I pointed out that Naomi was stoning for my having worn a Broncos shirt by wearing it the Green Bay hat she was given. Dr said that since she is transplanted here that being a Green Bay fan is also part of what she gets from her time here. A nurse joked that the “G” meant “grow” that Green Bay is where we Grow Cells. So then we all laughed a bit and told Naomi to whisper to her cells and tell them to grow…… and keep wearing the Growers hat.
Needless to say, with sluggish engraftment we are still inpatient. Her cells need to come up a bit more before she is safe enough to leave. As we played Forbidden Desert, Sinéad fell asleep on me and then I transitioned her to Naomi’s bed where she slept for over 2 hours! After the game, I fell asleep for about 2 hours. Naomi wanted Daddy to play Wii with her today. So Naomi, Aaron and Cait played Wii while Sinéad and I took naps. After I woke, I watched them play while chasing Sinéad around on the bikes. Seeing them jet ski and row boats was the funniest thing ever.
In the evening, Aaron sadly left for the airport. We agreed that nowhere feels like home unless we are together. We now start the countdown until we are all together for Easter. Yes, we will ALL be together.
Before dinner, Sinéad and Cait learned how to play dominos. Sinéad did really well matching the pieces and expanded her vocabulary with “I turn” and “flip it around” and “you turn.” She also became used to counting to 4 to make sure she didn’t have too many pieces. She did really well for 2 years old. I was impressed. Caitríona had her first official reading lesson. We are going to make the most of this time here.
Our first night without Daddy went fairly smoothly. Our goal is to leave Naomi and have her in bed by 8:30pm. Then to have Cait and Sinéad bathed and in bed by 9:30pm. That all worked except Sinéad woke up at 10:45pm and I had to scramble her some eggs for her to eat. Here she is eating some goldfish crackers while I scramble eggs. After her midnight snack, she fell right to sleep. I am extremely thankful for the RMH that provides all we need. It is truly amazing. After this is over and the medical bills are paid off, I feel led to provide support to RMHC. They will forever be in my heart after the fantastic experience we have had here. Here is the link if you choose to do so yourself. Each RMH is individually run and supported mostly by local businesses, churches and residents. I encourage you to find a RMH near you, or support ours.
Naomi shared her chair with Caitríona while we watched the start of Season 3 of the Bake off. Maybe that is why Sinéad needed more food at night? She watched a Baking a show after dinner? We all got along very well and all three girls are so snuggly. Sinéad helped me give Naomi her nightly foot rub too. Such loving girls. It is a fairly common gesture for them hug each other and share toys together. I know we will have some difficult moments – even more until Naomi gets released on outpatient status. Once we transition her to RMH things will get so much easier for us. But by planning the day well, I think we will do just fine.
As I prepared Naomi for bed, I did my usual clean up in her room. I sanitized tabletops and her canteen. I erased the figures on her dry erase board and prepared it for the next day. But I also set the intention to get out of there by taking a few pictures off the wall and piling them on her desk. Each night there could be her last as an inpatient. I may need to make a few trips across the bridge to move her out. If that is the case, I am ready for whatever that looks like. As soon as I hear she can leave, I will find us a wagon and start to load it up. I am thinking that she will still be there through the weekend and expecting her to be released Monday or Tuesday. I secretly hope he might let her out tomorrow, but Monday/Tuesday is more likely since she has been so slow to start making cells.