The day to day

This is Hannah's new room, a huge upgrade from the last, as we don't currently have a roommate and we have the window view (it's the little things!)  There's a daybed by the window where I can sleep, but most nights I just snuggle right in with Miss H which suits us both just fine aside from the fact that the bed regularly inflates/deflates throughout the night-it's a pressure relieving bed and it's kind of annoying.

This is Hannah the first day she got to go in the pool.  The facilities here are amazing and the pool is no exception, plus they keep it a delicious bathtub water temperature.  They also have lots of fun toys, puzzles and "aquatic" versions of games (like laminated Uno cards) to keep kids entertained while they are in there.  Hannah had to wait until her stitches came out to go in, so it was a very special treat.  She only swam for 30 minutes and was totally wiped out after, a real wet noodle so to speak.  Today she swam again, this time for an hour.  She did awesome, but again it left her pretty pooped the rest of the day.

Hannah is kept very busy here every day.  Today's schedule: 1/2 hr of PT at 9am, followed by aqua therapy from 10-11, followed by time with the child life specialist (someone she plays with but who is also checking in on how she's doing emotionally) from 12:30-1, followed by OT from 1:30-2, followed by PT from 2:00-3:00.  Phew! In between, we eat, try to get out for fresh air, hang out in the rec room, read books/do art projects/cruise around the hospital grounds looking for a change of scenery.  In the evenings after dinner they always have some kind of organized rec activity for the kids and then it's shut eye at around 8:30. 

Now that we're in our own room and Hannah can get to bed at a reasonable hour, we've hit upon a routine that seems to work well.  We read books and then she gets a dose of Benadryl for her itchy back and a dose of Melatonin to help her sleep and then we watch a quick show on the iPad before it's lights out.  I've noticed that if Hannah has had an especially busy, taxing day, she complains a lot about her back being itchy but on more chill days or days when she has enough downtime between therapies and gets into the bedtime routine at a reasonable time, she doesn't have problems with her back.  Which makes me think it might be more than just itchy, but maybe also sore or sensitive (in a nerve sensitivity kind of way).  Either way, it motivates me to try to preserve a good routine for her with enough downtime and making sure she's in bed early.   She's working her tush off while she's here and using her body in new and different ways, not to mention she did have a major surgery just two weeks ago, so it makes sense that she gets out of wack easily.

However, I do think it's worth it to mix up the routine now and again with special visits from family and friends and special outings as a family.  It's taking a toll on everyone, being apart from each other for such a long time, and now that we can take Hannah out for the day in the car, we are going to try to get out all together every weekend.

Here are a few pics of some special visitors and our first big outing as a family, last weekend at Brendan's cousin's house.  We all had such a great time being together somewhere other than in the hospital.

And here is my girl, sitting up so well and using a tray I got for her and Isabelle (at Target, in case you're wondering!) which holds all of her art supplies and provides a great place for her to do one of her favorite activities.

Next post, more updates on how Hannah is doing with her PT...