Tuesday, January 8, 2013

Round Two, Day One...and some fun with a fire alarm!

Yesterday was Jason's first day of therapy at Kennedy Krieger, though to call it a day of therapy is a bit of an overstatement.  It was more of a three hour long evaluation...checking in with what he's gained in the six months since he was last there.  His PT checked every muscle group for signs of movement, measured his flexibility in the lower limbs, checked his balance, and gave him a walking test.  We were pretty excited with the results.  He now has verifiable muscle movement in his lower abs and hip flexors (last time it was a "flicker," but the PT said it was pretty strong this go round) and also has some movement in his glutes, which is totally new.  Things are coming back online...albeit slowly :)

His flexibility is pretty great, with the exception of his ankles.  The PT gave us some exercises for that, though she did note that as soon as he could stand regularly (with the standing frame), the ankles would get stretched that way.  Right after we talked about this, I got a call from our medical equipment supplier saying that the standing frame has (FINALLY) been delivered.  Jason will be fitted for it the Thursday after we get back.  Hallelujah, that only took six months (longer if you count our first, aborted, attempt to get one).

The walking test measured how far Jason could walk in six minutes.  He did this on the last day of his June visit and got to just around 100 feet.  Yesterday he got a couple feet further.  I think he would have really blown his previous test out of the water had we brought his KAFOs.  Instead, he was using KKI's adjustable KAFOs, and he just wasn't as comfortable in them.  When we come next, I'll find a way to safely transport his own braces...I imagine it will involve lots of bubble wrap and maybe a hard shell suitcase.

The goals for this visit are to improve his walking (and his posture/technique while walking), and to build up his core strength.  The PT was really happy with J's progress and mentioned that, assuming all goes well over the next two weeks, she's going to recommend that our next visit be for only one week. This is great because it will allow us a little more vacation :)

For the most part, these first few days have been lovely.  The one exception to this would be the 11:30PM fire alarm we got to experience on Sunday night.  We're staying on the third floor of our hotel, so when the alarms started going off (we weren't in bed yet, so at least we didn't have to deal with trying to get dressed before getting out the door), we were faced with the prospect of getting Jason and his wheelchair down three flights of stairs.  In theory, we know how to do this.  The reality is that he's only ever practiced going down 3-4 stairs...not full flights of them.  When we got to the stairwell, it was to be confronted with concrete stairs (I was hoping they'd at least be carpeted or something, just in case J fell).  We were quite the sight to behold.  Jason goes down stairs backwards in a wheelie, with one arm holding on to the stair railing and the other hand holding his wheel, making sure he's going straight.  I was behind him, holding on to the back bar on the chair back, also helping him go straight.  For the first flight of stairs, I tried to block the chair with my body, holding on to him down every step.  This hurt...I've got the bruises to show that this wasn't a particularly good method for either of us.  After the first flight, we both were more comfortable and felt reasonably confident that J wasn't going to fall down the stairs, so I backed off a little bit (still holding on to the back of the chair, but not with a death grip).  Several people passed us, but, surprisingly (to me at least), only one man actually asked if we needed any help.  Not sure if this meant we looked like we knew what we were doing, or if people were just concerned with getting themselves to safety.  When we got to the lobby, we learned that it was a false alarm.  Ugh.  We had to wait about an hour in the lobby, though, because it took them forever at that time of night to get a security person to over-ride the alarm and let the elevators function again.  Thankfully, Savannah was with Jason's parents, so we didn't have to worry about her in the midst of all of this, too.  Oh well, alls well that ends well, right?

Love you all,

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