Making steady progress

Sorry I haven't updated in a few days; Suchitra is doing great, and I guess we've settled into more of a routine so each day has seemed a little more ordinary than when things were changing so quickly.

During the week she continued her schedule of twice-daily physical and occupational therapy mixed in with school and other fun activities like music therapy and therapeutic recreation.  Saturday she had one session each of PT and OT, and today, Sunday, is a free day.  As I'm typing this, she is in the playroom playing a game with one of the other patients here.  I was happy that she showed interest in doing that - she has interacted a little bit with some of the other kids, but mostly she prefers to get the nurses' attention.  And they have jobs to do so that isn't always the best thing.

Most of the other kids here are pretty severely impacted by whatever other disabilities they have, and are much less verbal than Suchitra.  Sadly, there is a child in the room next to us who screams constantly.  I don't know what his situation is but I feel so sorry for his parents.  There are a couple other kids who also had rhizotomy surgeries, but one just left and the other is on her way out soon.  Maybe more will come at some point.

I watched her PT and OT sessions on Friday and was proud of her effort and progress.  They are working on increasing the time she is sitting up, and trying to strengthen her core muscles.  She is required to be in her prone cart most of the time, and as of Friday, she is supposed to be in the wheelchair for 3 times a day, 15 minutes each time.  It always ends up being a little longer than 15 minutes though but that hasn't seemed to be a problem.  I think the reason they limit it is to prevent her from having hip flexor spasms.  Next week she will spend longer periods in her wheelchair.  She tried out a handcycle yesterday but she said it was hard.  The kid who just went home was getting outfitted with a regular bike with large-size training wheels on his last day, and I am very, very hopeful she might also be able to use a bike like that at some point.

Here is a picture of her enjoying the baseball, mitt, and jersey sent to her by her mega-baseball-fan grandparents.  This was taken out in the Healing Garden.  We've been going out there in the evenings to play catch.  This will be easier when she can sit up in the wheelchair for longer periods, but even so she is perfecting a pretty solid pitch.

One thing that concerns me a little is how stiff her back seems to be when she does sit up.  I assume it's a normal part of the healing process, but will ask the doctors about it when they check on her tomorrow.  She is able to be lifted onto the toilet now instead of the reclining bumblebee commode, but it's very hard for her to lean forward even without the knee immobilizers on.

Sleeping has been slow to improve.  We had several difficult nights this week which made both of us a bit cranky and tired during the day.  We keep working on fine-tuning the routine with the nurses, and the last couple nights went better so I hope this positive trend continues.

She does enjoy her Montana pajamas (thanks, Aunt Kathleen!)

Another concern is that she is still not eating very much.  The last couple times they weighed her, she's been losing weight.  To give her a break from hospital food and try to tempt her tummy a little more, last night I walked out to a Thai restaurant several blocks away and brought dinner back for both of us.  It was really good!  Here is a picture of her eating dinner in her wheelchair from a couple days ago. 

While Suchitra plugs away at therapy and other activities, I have been working a little each day and reading a lot.  I finished What is the What by Dave Eggers, as well as Whatever It Takes by Paul Tough (about strategies to fight poverty in America suggested by the work of Geoffrey Canada's Harlem Children's Zone) and Will in the World, a biography of Shakespeare by Stephen Greenblatt.  I also have been spending too much time reading the New York Times and following all the political coverage.  Each day I've been able to take long walks outside, thanks to the great weather.  I found out that the downtown YMCA lets out-of-towners use their facilities for $10 a visit, so I took a yoga class yesterday which was very nice.  So even though living in a hospital is not particularly fun, I'm lucky to have some good options to keep myself busy.

Suchitra has been pretty homesick, but your comments and emails, cards and gifts have helped her a lot.  Plus, by the middle of this week we will be halfway through our stay.

I will leave you with some pictures of the fun our dog Tiller is apparently having without us.  He got to go on a hike to a meadow overlooking Mt. Hood with his dog friend Bogart and human friends Carolyn and Brian.  I hope he isn't too cool for us by the time we get home.