Last night, I was excited to show Naomi the Merida wig and bow and arrow we got her for Halloween. Having watched brave more than 15 time a now, I thought it was fitting for her. So, it was hard when Naomi said she hoped to be HOME for Halloween. She also remarked at how much she loves her blonde hair and did not want to cover it up. We took a walk to the window at the edge of the hallway that looks out towards home. This has become an almost nightly routine. There we stood as I cuddled her and listened to her be upset by the progression of things and her still being here. I was her rock as she looked out the window last night while leaning on me and remarking at how much she wishes she were out there rather than in here. We then walked down to the second floor to watch the fish tank for a while. The second floor is where surgeries happen. So we avoid that area during the day. Last night was the first time we ventured down there because we needed a change of scenery. When preparing for sleep, she really wanted me in her bed. It was the first night in over a week that I was able to sleep with her. She was tossing and turning so much the past week with her sinus issues that I was in then way way and her moaning would keep waking me and my shifting would wake her.
So, all this did not set me up well for a good morning. Her hematologist came in and made it clear that the only thing keeping us here is her diet, or lack thereof. The surgeon has kept her on clear liquids and broth for 5 days now. How much broth, jello and freeze pops can a kid consume? She is sick of it. Not used to a sweet diet, she told me this morning that she wants FOOD not sweets. I cannot blame her!
I think I could plan better for 3-6 months of being in CA for a transplant if I were at home right now, myself. I miss my babies. I see pictures of Caity and Niamh and am thankful I can see them, but want to hold them. Still nursing Caity, I am sick of pumping. I was home with the older children a bit on Tuesday and did lessons in person with them and really enjoyed their company. The boys have matured so much during this short time. Lauryn has stepped up and takes care of laundry, her sisters, etc. while my husband juggles work, meals, dishes, errands, shuttling kids, etc.
Her blood counts remain stable and consistent, with no improvement today. The hematologist said that it is okay to be boring right now. Well, I am not so sure things are boring. Today has been hard.