Friday, June 26, 2009

hello everyone,
I am back in Albuquerque, it is raining here also so I wasn't able to escape it. I am writing to give my observation after 5 weeks of being away. wow, mom is really working hard as you all know but it is paying off. When I transfer her it is pretty easy, she can mostly lift all of her body weight, I am there for balance and guidance. when I was here last she would walk with her walker but with a lot of effort, she needed 3 people around her helping, now one person is needed just to spot her. Pinky is working on stamina, and still rebuilding muscles that have been weakened by lack of use.
This week I was able to accompany mom to pick up a 'Jazzy' this is a motorized wheel chair, so far she is loving more Independence, we put her in it and she doesn't have to wait for anyone to push her. The first day she got it she took it out on the street and met an artist who is a neighbor hopefully they can get together and play. This weekend we will use it more and let you all know how she did.
Pinky's daughter,
Beth

Saturday, June 20, 2009

Fun Pics






3 blogs in a day?

Ok, so we're not very good at posting to the blog. But 3 post in a day? Well, it's actually kind of raining here today and that kept me from working in the yard preparing the Queen's grounds (I'm trying to get the ground leveled and ready for Pinky's kiddie pool: it is redneck rehab after all). And besides, I've really been wanting to get everybody up-to-date. Pinky is walking with the walker really well and things have been going really good. I'm hesitant to say it, but everyone has told us that the recovery is usually exponential in nature and I really feel we are approaching that spot on the curve where it begins to climb quickly. She's a damn hard worker.

We are going to try to maintain the blog a bit better. Perhaps in more of a photo essay kind of way rather than writing. It's faster and more interactive as you guys will have to make up your own version of the story that way. No guarantees of course, but we'll try. SK

Wow!

Pinky wanted us to post these 'statistics.' Mostly, she loves the letters and support and wanted you guys to know why it's hard for her to be around the phone.

Since Pinky came home in January:

164 hours of supervised therapy. (i.e., with the therapist at rehab)

540 hours of self-initiated therapy.

90 hours changing diapers, or adult briefs for the more sensitive readers.

360 hours intermittent catheterization.

30 hours taking showers at rehab (since sometime around March).

30 hours in the soaking tub (we've only had it for about a month).

60 hours driving to and fro'.

45 hours digi-stemming. If you don't know...don't worry about it.

1800 transfers of Pinky's butt to an eclectic mix of surfaces.

We generated about 5000# of garbage and recyclables.

And she's been asleep for about 1620 hours.

So, please keep the letters coming and the phone calls. They really give here a lot of energy and passion to keep working hard. A lot of people in Pinky's situation simply decide not to do the work that's necessary and never get to the point she's already at and certainly not to the heights we will reach. It takes an incredible amount of work and perseverance and wherewithal. After each knew challenge has been met, there's another waiting and people of less character and strength simply get worn out by it all. Understandably so. Though we have some of that in very briefs moments, she's a trooper and is always up to the challenge. Simply amazing! She wanted me to tell you guys, she loves and misses everyone very much and is working hard to get back to her life. SK


What's Pinky Been Doing?





A typical day in Pinky's world:

10:00 a.m.:
"Family." Pinky's up and usually calls out, 'family,' to let us know she's awake.

10:00 a.m -11:00 a.m:
Morning hygiene and phone calls back to Jersey and Gene.

11:00 a.m-12:00 a.m:
Stretching regiment and Bonnie Hunt on the T.V.

12:00 p.m-1:00 p.m.:
Usually Pinky has some snacks and we drive to rehab.

1:00 p.m-6:00 or 7:00 p.m.:
Depending on the day, Pinky is either working with her Physical Therapist and Occupational Therapist or working out at home. In between, we run whatever errands we have. Pinky has begun going into the grocery store to pick out her own food. It turns out she's a great driver of the big 'phat' electric carts with the baskets attached.
At some point during this time, we usually go swimming for an hour or so and have a shower at the rehab center. Most of the pool time is spent working out and fine tuning mechanical skills necessary in walking. We try to allow her some free time to visit and swim around. She's a hard worker though, and rarely takes us up on it. She does, however, really enjoy the pool and the independence it affords. If time allows and she's feeling good, we take advantage of some of the equipment the rehab center has and we work out on our own.

7:00 p.m -9:00 p.m.:
Like everyone else, we normally have dinner and try to veg out with the T.V.: usually, a network series rented from netflix or a movie and who knows what's for dinner.

9:00 p.m-10:30 p.m.:
It's bath time at R.R. Pinky usually gets into a soaking tub around 9 or 9:30 and hangs out for an hour or so at about 99-100 degrees. Of course, being R.R., we have T.V. available in the spa room, so she normally continues the movie while in the tub.

10:30 p.m-11:30 p.m.:
Once again, like most everyone else, we prepare for bed with many nightly rituals.

11:30 p.m.- 10:00 a.m.: Pinky's in Pinky land, usually dreaming of kicking it with Bonnie Hunt, or doing some light carpentry work building herself a house. Some nights she plays with Jack and Will in her dreams. Other nights she paints or drives her car around town. Tonight, who knows what Pink will be up to....

Variations:
Some days are different than others. But that's pretty much the routine.
The weekends are different, but she continues to work out albeit, perhaps a bit of a lighter work out. We try to have some fun on the weekends, inviting friends over for Pinky parties or going out to the movies or for snacks. Holly and I fear that we're not as much fun for her as all of you guys in Jersey, but we manage to laugh a lot and we have a pretty good time.
As for her pain management, she's been doing really well. The soaking tub and pool really seem to help with the spasms as long as the water is warm: at least 90 degrees to swim, with 92-94 being ideal and usually around 100 degrees for the soak. When she does have significant pain, the routine changes and revolves primarily around management and dismissal of the evil spasms and tone. Otherwise, we're kicking it and rocking out at R.R. SK

Wednesday, June 10, 2009

Sunday, June 7, 2009

Pinky's kicking BUTT!

Hi all,
It's been a while since our last post as we've been busy keeping up with Pinky. There has been a lot of progress and many 'first' since the last entry. Her pain levels have been much more manageable and as a result, she has really started working hard. We usually average around 4-5 hours of working out per day both here at R.R. and Lovelace with her two therapist, Rose and IvyRose. I'm short on time as we are off to get Pinky in her soaking tub and get ready for bed. I just wanted to let you all know she is doing really well. We have begun Pinky games again as well as Sunday art days with our neighbors kids and friends, so that ought to tell you something. SK