Well, I did get to sleep on the couch for about an hour last night before Shyanne decide she needed to eat. We ended up getting comfy in the chair and just sleeping there.
It’s been a pretty uneventful day but we still stayed pretty busy. Shyanne’s ANC was 0 today which was not totally unexpected. Now we just wait for her to climb back up.
She has been eating pretty good today and she enjoyed some of the cake that Daddy made for Sissy’s birthday today. It was pretty good and Daddy isn’t going to get out of dessert making from now on.
She is still on her prophylactic antibiotics until her counts come up above 500. She did get off her ‘leash’ today though and will only need to be hooked up to the IV when they give her antibiotics.
She has been enjoying her freedom as she can roll and play without getting tangled. I didn’t get her play mat out today but we did work on sitting and getting into the crawling position while she was in bed. She’s making such good progress.
She has been pretty tired the past few days and took a couple of naps today. I was able to clip her nails during one nap and then I did some reading during another one. I actually read two books today!
I’ve also been making some lists of things I want to take care of when we go home this time. I know my time at home will be limited and we don’t know exactly how long we will have. We do need to have a birthday party for little miss while we are home though.
I spoke with the doctors earlier today about the fourth copy of chromosome 21 but they said it was a ‘neutral observation’… it doesn’t seem that it will affect anything with her treatment or recovery. I was going to ask to speak to someone about the bone marrow process but I’m holding off for a little while because we aren’t sure that we will need to do this yet.
They’ve also been making sure that our rooms are getting cleaned. I know I’ve said I don’t like to complain but they made a good point today. If the patients/parents don’t say anything then they won’t know there is a problem and they can’t fix it.
Everyone has been taking such good care of us that I really don’t like to feel like I’m complaining. They have been taking really good care of Shyanne and you can just tell that everyone genuinely cares about her.
Child Life also came by with some teddy bears. There is one for Shyanne and some more for her brothers and sisters at home. I’m sure they will love getting these gifts and maybe it’ll help them when they are missing us so much.
We just finished up her bath and I put fresh sheets on the bed. She is playing quietly… well semi-quietly as she loves pulling on her monkey. She is also snacking on her toes so I’m going to let her calm down before bed and maybe she’ll sleep better tonight.
We thank you all for your thoughts and prayers and hope you all have a great night!