Back to reality…
why do i always start my blog posts with random songs? That is so strange. And this one isn’t even a song I like.
The girls started back at school today. I feel badly for them that they really didn’t get much of a break in their break. I am sure they had fun, but the way the break fell this year is just weird, and having your sister in the hospital for a week of it has to put a damper on things. I think they were glad to go back to their friends and their routines and their schedules, and I am glad to have “order” to the days again too, but I wish I would have done more with and for them.
It was great to have our nurse back today. It is a somewhat shocking revelation to realize how much I have come to rely on them to help assess Kendall’s up and down swings in any given day. As to what they do throughout the day, it really is just about anything related to Kendall’s care – one of the biggest helps being that they get her up in the morning, unhook her from all her tubes, clean up the inevitable bed-soaking mess, give her a bath, get her ready for her packed days (you know, therapy, eating noodles, reading her books – she’s got a very busy social calendar!). They do all the torturous meds (if you have never pinned a baby down for a shot or an inhaler with a spacer/mask, you have no idea what fun really is!!!), and in general, they do all the monitoring and charting of the crazy stuff she does in any day that used to drive me BATTY trying to keep it all straight. It has freed up part of my brain to be able to focus on the kids and remembering things like putting on matching socks or being able to not stand in the middle of the grocery store wondering what i needed so desperately. It’s all good.
And of course now that we have had Kendall on the oxygen 24/7 for 2 weeks, it is even more invaluable to have their input.
anyways – how did i get off on that tangent?
Since I am just trying to remember what happened last week now, I’ll wrap this one up here. And in case you are wondering why she is only wearing one sock – its because we put a sock over her pulse ox probe to help keep it on her foot. She then prefers to just keep only one sock on. She’s strange and cute and adorable. In this picture she is playing with a snowman ornament my mom gave me last year, and she is IN LOVE with it. It plays music and has ice skaters that spin around when you open up his stomach. She will come up to me about four or five times a day and ask for “dot-dot-no-man” (which is a mashup of words her therapist sings to her during OT practice with colors and some weird version of snowman). It is the most precious thing. When she is otherwise tired or stressed or trying to find her happy place she will suck on nee-nee (her green binkie) and sing “dot-dot-no-man” over and over and over to herself.
A crazy friend has pointed out to me that it makes ME crazy to have to go back and post all these in order even though it is a week ago, and i think she may have a point. So i may skip ahead to the major details of the week from here on out – like the GI appt, my processing of the GI appt, and then random fun pics from the week.