One Year Ago Today: 01/12/2013 - Family Play Time

(01/12/2013, Saturday) This morning we slept in until around 1000, and then we had breakfast (whole-oat oatmeal with craisins), then we did more in room PT, this time, just encouraging Evie to scoot from one end of her hospital bed to the other each time she passed a level on Unblock me (a block moving app, similar to the game "Rush Hour") She did this until she got tired from moving, then she played her My Little Pony app for a couple hours.

Evie fell asleep about 30 minutes before Heather and the other kids were due to arrive, so I met them downstairs, took the kids to the playroom, and Heather just hung out in Evie's room for not quite an hour, at which point she woke Evie up so she wouldn't miss her chance to play, as the playroom closes at 1600. Evie enjoyed playing on the floor with her little brother, and he was thrilled to be able to play with her and get so close. I entertained the other two while we played and made a giant wood block structure:

Afterwords we went back to the room, and the recreational therapist brought us everything we needed to make Vanilla Ice Cream by rolling around a ball on the floor to each other. It was messy fun, and we wished we had something other than a plastic cereal spoon and plastic knife to get it out with when we were done, but it turned out pretty good.

At that point I should have gone home, but we had a brief family council (prompted by Evie) and after hearing everyone's thoughts on the matter, we decided it would be best if I stayed here. She misses her mother, but she is less stressed/anxious when I am here I guess. I miss the other kids, but at least I had a few days with them last week, even if we were mostly doing chores together when I was home.

Most of all, I think the lack of time Heather and I have had to spend hanging out together, even to do something as rudimentary as talking about what to eat for dinner is taking its toll. Don't get me wrong, we're grateful for phones and Skype, as well as the chance to see each other, but it is still rough. Not quite sure what to do about that, and it is looking like life won't settle for a while yet.

In the later evening Evie ate her dinner. Unfortunately, she promptly vomited it back up. I think this one was my fault, I was trying to make sure she ate enough, and I think she was trying to make me happy, and I think her shrunken tummy got overstretched.

Another downer was that the cough she's had since the day she left Pediatric ICU has become more and more pronounced. Luckily, it isn't particularly severe, but like bad hiccups, you can't make it stop when you want it to. She also started to complain of chest pain. She'd been disconnected from all monitoring/lead lines, and when we hooked her back up before bed, her oxygenation rate was low, hovering around 89%. So she went back on oxygen, this time though only at 0.4 liters, so it isn't severe, just not the trend I wanted to start. Due to the chest pain, we had a late night in-room chest x-ray, but initial feedback is that nothing looks particularly interesting. She is not sleeping particularly well.

DISCLAIMER: Posts Labeled "One Year Ago Today" are a record of what transpired when Evie first became ill.  The slightly edited text comes from emails which we sent to family to let them know what was happening, and to keep them updated.  These posts are usually long, but if you want to truly understand what life was like for us, and what led to this point, it makes for great "light" reading.