Bill, late Mon, Sept. 30: blood test; stand-pivot transfer

Bill continues to have weekly blood tests. I didn't mention the results from last week, which showed his creatinine level was up -- that is one of the markers of kidney stress, but we weren't too concerned because the others numbers were all in the normal range. This week the creatinine is still up, and everything else is still good.

Today was another therapy advance: a transfer from bed to chair via a stand and pivot! Bill had a pretty proud grin on his face when he told me about it. Maybe I will get to see (and maybe record) him in the act sometime this week.

Bill Mon. Sept 30: no big changes

Hey, sorry for the lack of posts, but not a lot to report.

Bill continues to have therapies. Friday resulted in a slow slide to the floor. His latest wheelchair is wider than the prior chair. It didn't fit the same for the "ratchet" standing machine, so when he went to sit back down, it was further back and ... down he went, at least mostly down.

Quiet weekend.

Bill Thurs. Sept. 26: RIO? Fingers?

Yes, yes, I know and many have asked so here is the answer. The question: what happened with the RIO (intense in-patient rehab) meeting on Tuesday.  It didn't happen, which is fine. The intake coordinator talked with Bill's current therapists, and they agreed to put off the discussion for a while. Because Bill's blood pressure has been dropping when he stands, they think that might limit the amount of therapy they could do each day -- they want to shoot for at least 3 hours, and more like 5 hours.

His meds have been adjusted again, in coordination with the OHSU doctors, and it looks like it is helping.

Fingers? What's the headline about fingers? He has some movement in his LEFT fingers now. Yee-haw! Different than how the left leg movement started, which was from his hip. But what the hey, we'll take it. Tiny little movements, but a waterfall must start somewhere.

Bill, Mon. Sept. 23, going to standing

Hey, I got one posted! But more "hey," you get to see Bill standing. Sorry for the poor quality.

This was his second time up, so he was a little more tired. His blood pressure is still dropping when he stands, so the doc is working to figure out a happy medium. (For you med-savvy types, the pressure went from 124/xx pre-stand to 94/xx standing.)

Bill, Mon Sept 23: vision doctor

Remind me to get more information on this, because I'm hearing it second-hand! There is talk of getting approval for a specialist, a "behavioral eye doctor." Treatment would help for the left-side neglect, where Bill doesn't see left of a certain point in mid-field. I believe he said there are other field of vision issues (maybe low spots?).

More info later. Don't let me forget, okay?

Bill, Sat. Sept. 21: work and patent

Today Bill was interested in what is going on at his work, and wanting to stay in touch.  And he said he needed to get the paperwork for his patent.  Patents. He is getting two patents -- the first I've heard about this!  If his grandpa were still alive, he would be SO proud. Don't get me wrong, he loved all the kids regardless of accomplishment. But he was an engineer, so the patents would really tickle his logic side!

Bill: Friday Sept 20, "Med Dizzy"

Short update from Ayn: Thursday was a better day. Blood pressure is good overall, but still drops when they have him stand -- he gets dizzy, and can't stand for long. The doctor further reduced medication Friday.

By the way, Bill's on-site doctor, Bonnie Creitz, is wonderful. She is "semi-retired." We've seen her put in 60 hours a week at Bill's facility, plus she volunteers at a clinic. Goodness, how many hours did she work before semi-retiring?!?

Bill, Wednesday Sept. 18

Not a great day. Breakfast didn't sit well. Later in the morning there was a slide, or a near-slide to the floor, coming off the lift and into the chair.

BUT some good possible news on the RIO front! (That's the in-patient rehab, next stop before going home.)  More as that process moves forward.

Bill, September 17: Additional Update

Julie received mail indicating that the State of Oregon will be "conducting an unannounced on site investigation" on the rehab/nursing facility where Bill, Ayn, and Julie experienced so many problems.

Bill, Tuesday Sept 17: no tube, other

The feeding tube has finally been removed. It hasn't been used in weeks (three weeks?), but they didn't want to make a special trip to the clinic. At the moment, kind of looks like he has 3 belly buttons (the normal one, plus one at the trach site, and one at the PEG site).

The appointment was tagged onto another follow-up with nephrology (kidney) and hypertension. They are moving forward with possible genetic testing to see if a rare condition caused his high blood pressure. A diagnosis that direction changes the treatment.

Medications are being adjusted in hopes that he can stand longer without getting dizzy.

In the background: their old apartment is officially closed down and the new one is packed (PACKED) with boxes. Julie and hubby are going to the coast for three days.

Bill, September 12, Standing at the Bar

I was so excited to post a video, but I ran into multiple problems.Waited a few minutes to load, then "sorry, we encountered an error."  No, this is very important! Don't you understand, Mr. Computer? Failed three times.

Bill, Tuesday September 10: video

My great hope is everyone can view this! At the end, Bill is saying, "Controlled descent." I asked if the therapist, Ryan, told him to control it. Bill's answer is cut off, but he said "No, that's from flying." (Bill soloed a glider the day after he turned 14.)

Bill: LEFT LEG MOVEMENT!

So exciting! Ayn texted Saturday morning: "We had a great night. All of a sudden Bill got a lot of left leg movement and sensation back!"

Thursday: RIO discussion; Friday: I took a day off

On Thursday, the coordinator at Bill's facility told me that RIO is working to "take" him, but his current therapists were surprised and thought it might be a bit early. I agreed, and also explained Ayn had a bad vibe from the woman who visited, perhaps as being to much of a marketing spiel. In the end, I asked her to help put the discussion off for two weeks as The Big Apartment Move will happen in ten days and the family situation doesn't need upheaval all at the same time.

We have a moving company reserved, and the city parking permit ordered.

Friday, I took a day off. ("I" being Julie, Bill's mom.) Today isn't really an update about Bill, just peripheral activity.  I'm hoping that next week, during one of his three "standing" days, I can get a good picture or maybe even a video to post!

A day off is relative. After granddaughter "C" went off to school, I dropped some big items at electronics recycling that we were FINALLY able to get Bill to let go. On my way home, really home, my home, I got a call from the short term disability coordinator -- so a short conversation about OHSU's insistence on particular language in the release, and yes I had sent it a week ago, and yes I would also fax her a copy for her file.

Stopped to get Bill a couple more pair of gym shorts. This took two stops.

Mid-afternoon I received a call from the drug-study nurse at OHSU. I was happy to give him an update on how well Bill is doing. At the three month mark, they will do another CAT scan as part of their study; I got him to coordinate the scan with Bill's already scheduled follow-up in mid-October.

Bill, Wednesday Sept 4; bridge and sit-up

Little improvements every day! Tuesday's PT had him trying a bridge (I call it a butt lift), on your back with knees bent, lift your butt off the bed. The therapist was helping, but said he has definite strength in his hip/butt. Then she had him try a crunch, a mini sit-up, enough to lift his head and shoulders.

Ayn took a picture of Bill 'standing' today, in the harness/walker thing I haven't seen yet. Maybe we can get a better picture tomorrow?  Oh, and notice the shorter hair if you were used to his prior look!

Bill, Monday September 2: Apples and Standing

Eight weeks.

Final eating test: he got to eat apple. No problem. So no more 'soft foods' restriction. Now if he could just get some GOOD food. Bill likes the grilled cheese sandwich, I should say. And for breakfast, plain old Corn Flakes has become a staple.

But wait, you say? What's this about standing? No, he hasn't stood on his own, but they put him in a standing harness (I think it's called). I didn't get to see it myself, shucks! They expected his blood pressure to drop, and it did. So the progress continues! 

Side notes:

* The CNA who was primarily in charge during the Great Slide to the Floor is leaving. She is going to work for the facility where we had the Great Failed Transfer, our nine hour trip to Hades. I know she's not a bad person, and she felt very sorry for what happened, and I kind of wish she wasn't going there.

* Bill's neighbor, with whom a bathroom is shared, has quite the interesting toilet commentaries (we think he doesn't realize how non-soundproof the door is). "Well that's one to show the grandkids." OMG, poor kids are probably in therapy already if they've grown up with that mindset.