Lunch out? Better PT day

Being able to eat a meal together as a family is a wonderful thing, and here's a photo to prove it. Get a load of this: Denise told me that her doctor thought I might be able to take her out to a restaurant for lunch this weekend! I just need to receive the wheelchair/walker orientation from a PT. I hope that's truly the case, and I can't wait to talk to the doctor tomorrow to find out if this is true. The last time we went out for a meal was on a trip to Big Bear the weekend before she started feeling ill.
Thanks for pulling for my wife after yesterday's frustrating day! You all are quite the tug-o-war team, and here are the results: She told me that the pain wasn't too bad today, that she had walked way farther than yesterday, and that the PT said she was almost doing it on her own for a time. Some people emailed their own personal rehab triumph stories, which I haven't been able to read to her yet. But I'm sure they'll be an encouragement. She's still eating well, no vomit. She will be on a calorie count tomorrow through Friday. Jacob called her "Mama" again, gave her kisses, and they played together for a while. Though he was weaned about six months ago, he still went grabbing for the food. Yep, I'm pretty certain that he recognizes Denise now.

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Physical therapy pain, Reading, Jacob snuggles

Denise was in tears for a little while tonight. Her day was filled with PT & OT, and she was in pain, wondering how she ever got this weak. She said she couldn't believe that she used to walk. I had a knee reconstruction a couple years ago that had me laid up, but not to the point where she is now with her entire body. Months ago when she was still fully sedated, we received emails from some of you that had extended hospital stays. Several mentioned that getting through the primary medical problems were only the beginning, and that rehab often seemed impossible. If you've been through all that, could you please email Denise, stating your struggles and including some "atta-girl" words of encouragement to her?
Now for some really good stuff: She ate plenty of food and held it all down. With help and a walker, she walked from her room to a point that's past the nurse's station (cheers!). In a wheelchair, she rolled back from the workout room. She had plenty of caring visitors this afternoon and/or evening... pastor, her parents, my parents, & Jacob. She was able to read some of book with regular-sized print. She said looked blurry, even with her glasses, but she was able to read it. Lower lighting conditions help her see better. I'm encouraged by that. A few weeks ago, she couldn't even make out the words in a large-print Bible. She can't see pencil lines well, but she can see pen lines. This will be handy for the OT to know when working with Denise on writing & math tasks. My favorite bit of good news: Jacob excitedly called her "Mama" and even started snuggling up to her.

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100 pounds, McD's comes up, God's "even"

Denise is back up to 100 pounds now! Tonight she ate most of her dinner, then I brought her a requested fajita & chocolate shake from McDonald's. A few minutes after downing most of the shake, everything came back up. McDonald's usually has the same effect on me. Too much milk shake, too cold, too fast, she said.
The kids & I visited this morning as well. We all went outside to the courtyard and her dad took a picture for our Christmas cards. My mom went by and wrapped Christmas gifts with Denise in the workout room. She also enjoyed a session with a counselor. He'll be visiting from time to time to listen to whatever is on Denise's mind and help give us some insights into coping with all she has been through.
This morning Gracie was making her bed and told me that her bedspread's like God. Huh? She pointed to the squared-up bedspread and said "Da-a-d (eye roll), look! It's even, see? It's not uneven" We did some Q&A but I couldn't figure out what she meant. Later in church, the pastor said we were going to pray, and Gracie immediately started in with the Lord's Prayer: "Our Father, who aren't uneven..." Ah-hah! If Gracie were around a few decades ago, she'd have been a regular on Art Linkletter's TV show. What Gracie said made me think of being in high school and finally realizing that Creedence Clearwater Revival's song "Bad Moon Rising" *didn't* contain the line, "there's a bathroom on the right." I still think of that part of the song every time I pass a rest stop on the highway. But I digress, as I often do... Also in church today, Gracie was getting kind of squirmy, drawing on the bulletin, demonstrating her newfound prowess at blowing spit bubbles... you know... all the stuff we did as kids in church. The pastor started talking about grace, and Gracie snapped to and sat up still, wide-eyed. After hearing "grace" a few more times, she cupped her hand over my ear and whispered, "Daddy, why's he saying my name so much?" I told her that he's just making sure that she's listening when he's speaking (sorry... I couldn't resist). A few minutes later she leaned over and whispered, "Is he gonna say my name again? I have to pee." We left.

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Pulse down to 84, Christmas music

Earlier in the day, Denise seemed a little slow to respond to questions. Not knowing whether that'd be caused by being tired or if that was seizure activity, and remembering that her IV was disconnected yesterday, I called in to give the nurse a heads-up. I'm not usually paranoid, but I just thought maybe the anti-seizure meds were overlooked. Nope, she's still on the Depakote by mouth, and everyone's taking good care of her. That's why they're doctors & nurses, and I'm not. When I went again this evening, she was doing well... much more on-the-ball. She ate just about all her dinner, and had been eating well all day without throwing up. No fever, blood pressure was 120/70 (with coreg), pulse was 84. That's the lowest it's been in a long time. Her hands were a little shaky, but the room was quite cold, so I'll assume it was that and not anything seizure-related (OK, I still let the nurse know). I put a quilt on her to keep her warm. It's a quilt that was given to her at the beginning of her illness, made by people at the First United Methodist Church in Pasadena CA, where one of my mom's friends goes. The quilt has decorative knots tied in it, each knot representing a person that's promised to pray for her (Thanks! Keep it up!). Covered with quilt, covered with prayer... two birds, one stone!
Tonight we listened to the Jackson 5 Christmas album, and she was singing along with a few songs. A neighbor took the old LP and burned it onto a CD for us. It's got all the crackles & skips, just like she remembers from listening to it with her family as a kid. She doesn't like the skips because they make her miss some parts of songs. I like the skips because I'm not exactly a Jackson fan, excepting the guitar solo from "Beat It" (contributed by Eddie Van Halen). But just so you all know how much I love my wife, I'm on a quest to find the CD for her.
Denise had a visit today from a college buddy that has a disability, has difficulty walking, and who has served as an inspiration during these last couple months (actually, they've been inspiring each other lately). That reminded me of things that I forgot to write about. Weeks ago, Gracie noticed that Denise wasn't walking or standing, and started asking about that. I explained that mommy can't do some things right now because she was very sick for so long and has to get stronger, but she can get into a wheelchair soon (this all took place before Denise took her first wheelchair ride while still at USC). We have a set of dolls, one of which is in a wheelchair. Gracie was playing with her dollhouse, and that doll was the "Mommy" doll for a while. At one point Gracie asked if mommy would have trouble and need to walk like our friend. I said I didn't know, but probably not. But even if she did, our friend can still go to the park, the mall, the zoo, and get around and do things. So even if mommy had to walk the same way, she would be able to do all those things, too. Gracie said, "Okay," then went back to playing. No big deal.

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Family dinner, Catheter removed, Pig pens

All of Denise's meals stayed down today! Our family ate dinner together tonight. Well, Denise had already eaten dinner before we arrived, but she nibbled on our food, too. We all got to sit at the edge of the bed together. Jacob was interacting well... still not a cuddle-bug like Gracie, but an easy smiler and increasingly comfortable every time he sees mommy. It was my dad's birthday today, so we called & sang "Happy Birthday." In different keys all at once so he could pick his favorite. My dad's big into southern gospel quartet music, in which families often form groups. Some families just shouldn't sing together. Even recovering from having trach in her throat for several months, Denise still sings better than I do.
Most of the workouts were done from the hospital bed, as she was very tired today. The urine catheter was removed today. I don't know if they're starting bladder training, or if it just came out, like the feeding tube did the other day.
Driving back after dinner, Gracie asked if she could see the piggies in mommy's pants the next time we visit. Yeah, you can read that last bit over if you like, but I *did* say piggies in the pants. OK, After lots of Q&A, I figured out that Gracie thought mommy said she was wearing "pig pens" on her bottom. What Denise actually said was that she was wearing Depends on her bottom. Part of the fun of being around kids is figuring out why they say what they say. It gave me a chuckle; hopefully you too.

Email list goofiness: Please be patient. Hopefully everything will be back to normal soon. Until everything's sorted out, I'm removing the link to subscribe for email updates.

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11 steps, IV fluids stopped, Vomit, Email list goofiness

There has been some goofiness with the email list. Subscribers to the blog's mailing list either have not been receiving updates for the last few days, or have been getting multiple empty emails. My cousin Webmaster Mike (the Magnificent) is in contact with his ISP to try and resolve the problem. In the mean time, just keep checking the web site. And while you're there, be sure to click the ZOOMABLE Guest Map link and put in your pushpin if you haven't already done so. Remember to first zoom & drag the map around until you find where you live, THEN click to add your pushpin.

Sorry for no update yesterday. It got too late. Here's what happened during her first day back at rehab:

• With assistance, she took 11 steps (that's 28 short of a great Alfred Hitchcock movie... sorry... Denise & I love old movies).
• Rolled herself around in a wheelchair for a few yards, and got to go outside for some sunshine.
• Dressed herself & wore normal clothes again.
• IV fluids were discontinued (IV meaning "intravenous" and not "four" in this case), though I believe that she still does have the PICC line that was inserted last Saturday.
• Sat on a commode instead of using a bedpan. Don't mention that to her. If you do, you didn't hear it from me, OK? She asked if I could go to Home Depot and buy her a padded toilet seat because the commode seat hurts her bony behind. Again, you didn't hear any of this from me.
• She vomited at lunchtime today. I guess that about 15 minutes prior, she was talking about the TV show Fear Factor. Maybe thinking of what they have to eat on that show grossed her out. Maybe they served up something unmentionable for lunch. I don't know. But she did hold down two full meals and some small snacks throughout the day. So she's probably batting about .700 and that's not too shabby.

Thanks for the encouraging emails! She loved getting so many from people she hasn't heard from since before going into the hospital. Several were from total strangers, which is always a kick. The emails are one-way, as she can't respond to them. But you can still call. The other day when I wrote up the new room info (La Vina building 4124), visiting info (M-F 3-8pm, any time weekends), and phone number (626-535-6458), several people notified me that either the phone wasn't working or she wasn't answering. I found out why. Last night I noticed that the phone wasn't plugged in. I used my extensive technical skill to solve the problem. Still, she won't answer the phone when working out, eating, napping, or when she's just plain unable to reach the phone (with pillows propped behind her, she can't roll over & grab the receiver).

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VHS to DVD transfer

Is anyone set up to do VHS to DVD transfers? I'm trying to get two of our favorite (out of print) Christmas specials onto DVD so Denise can watch them on a portable DVD player. Each special is 1/2 hour. Thanks!

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