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Saturday, September 3, 2011

Baby Steps

I know I haven't been blogging as often these past few weeks, but life has been rather frustrating, all around. More and more, the phone rings from creditors to the point where I cannot answer the phone without fear (the hospital, alone, wants $27,000+!) and Bob's bladder problems have come back with a vengeance and his progress all around seems so slow (if any, at all) that I have been feeling a bit overwhelmed by all it. It often feels like the proverbial clock ticking here (Bob's one year stroke anniversary is next month!) and I know, in my heart, it is not true but I keep hearing all those doctors who told me that "the first year makes the difference" and after that, he's pretty much doomed and wont progress any further.

I know that's not true. But one can't help worrying about it.

So there is a weight on my shoulders as I (as Bob's PT/OT/ST) bear much of the responsibility here. So I'm often worrying about what am I doing wrong? or what can I do differently with his therapy? and how can I jump-start, kick-start, beat-him-into-submission so that he will jump out of that bed and dance around the room?!

OK. I am exaggerating here. But you get the drift. These things weigh heavily on my mind. And then there's the PT at Rehab (the female one) who told me that Bob wouldn't be allowed back at Rehab until he can stand up and walk without having to hold onto the rail. Which brings two other things to mind, i.e.: if he can do that, what the heck does he need Rehab for? and How the hell are we going to achieve this, at home?

But I titled this post "Baby Steps" because he has taken some "baby steps" this past month and I wanted to outline them here (mostly to make me feel better!):

1. Leg Movement: He's moving his right leg from side-to-side much better, to the point where he can now adjust it when he's in bed without calling me for help.

2. Walking: He's back up to 9 trips daily on the hallway rail. That is his old "record" but he hasn't been able to do that since before "the fall in the hall".

3. Transferring: He is able to get from the bed to the wheelchair without the slide board. He just scoots over--still can't stand up, but he is using more muscles this way. Still needs the slide board to get back into bed because that's more of an uphill climb.

4. He's shaving himself! With an electric razor. This is the first time he has taken in interest in his looks, which I think is a very good sign and a move toward some independence. And boy, I had to push him to get him to do this the first time, but now he does it willingly and happily.

5. He's gained all his weight back (and then some!) His primary care doc just cut back his Jevity prescription so that means one less feeding I have to do per day. A relief. Plus Bob wants it cut back even further as he is worried about gaining weight--another good sign because, again, it means he cares about his appearance. Even though I tell him he's just gained a little "buddha belly" and I think it's cute.

6. His Scrabble game is improving. So that means his reading comprehension is improving. Just the other day, he began to pronounce the words out loud as he played them (even if the words themselves were wrong).  Example: he spelled out the word "fita" (which is not a word, at least in the "official Scrabble dictionary") but he pronounced the syllables perfectly and I think he was aiming for "feta" as in the cheese, so he was very close. And I'll take credit for this one. Scrabble Therapy was my idea all along.

7. I think possibly, just possibly, he is speaking a little better. Possibly. I will have to take a video of him and compare to be sure. But I think this just may be the case.....

Well, there. I do feel a bit better now.

Update: As of 4:30 p.m. this afternoon, Bob set a new record for walking the rail in the hall: 10 times! Whoo hoo!


Jenn said...

I think Bob's made a great deal of progress in this almost first year. I am honestly amazed how Bob shaved on his own. I saw in this activity a "normalcy" (if you will), and am encouraged by this!
I love how he studies the Scrabble board, figuring out words and ALWAYS knowing placement strategy.
Congrats, both of you, for achieving 10! Amazing!!!!
And to that PT that literally shunned further therapy....boooooooo. But then, maybe that was a catalyst propelling you further than if Bob stayed with ms. wishy-washy!
Oh, Nietshe, how much stronger must they have to be!

barbpolan said...

Congrats to both of you for setting a new record!

Compare THAT to one year ago. And playing Scrabble compared to a year ago. As for the doctor saying the first year determines how much he'll progress, why would the one-year anniversary stop improvement? Or one year minus a month? If he's progressing daily now (which he is) why won't he continue to? Because some doctor who cannot truly see into the future tells you he can?

Please forgive my rant, and remember that change is tough to see notice... do you remember Boomer growing every day from puppy to dog?

Nikki said...

It's good to know that he's making progress even if it's slow and hard to measure some days.