WTL! What the Lorp#@!

It's 4 am on Saturday morning - can't sleep so thought I'd catch y'all up on the last two days which have been an emotional rollercoaster for us. First, here's what our typical daily schedule looks like:

• 7:15-9:00 AM - Pre-stroke, Bob was an early riser - morning person. Now we have to start early to wake him, kind of like my youngest nephew Chad who gets up at 5:30 and leaves for school at 8:30. Anyway, Bob has to get dressed, wheel to breakfast group occupational, speech, and neuropsych therapy.
  
• 9:00 - 10:00 - Individual occupational therapy (practicing dressing, putting on shoes, personal hygiene, toileting)
• 10:00 - 10:30 - Singing, puzzle time, outside wheelchair walking time (with Sharon, lucky Bob)
• 10:30 - 11:30 - Speech therapy (speaking, reading)
• 11:30 - 12:00 - Rest on patio (he's usually so exhausted by now he can barely keep his head up)
• 12:00 - 12:30 - Lunch (which is therapy - using utensils, napkins, opening containers. Who knew eating a meal could be so physically and mentally exhausting but when one is relearning linear thinking - what to do first, second, third (e.g. open the milk carton before trying to drink, put the utensil in the food and bring it to mouth vs. putting mouth in food). The nurses let me use their microwave to heat my lunch so that I can eat when Bob does.
  
• 12:30 - 12:50 - Nap time (sitting in wheelchair although he'd really like to be in bed. Right now we're at the mercy of nurses to help transfer from wheelchair to bed and back and they won't do it when there isn't much time between sessions.) I wake him after 20 minutes so that he's alert for PT.
  
• 1:00 - 2:00 PM- Physical and occupational therapy in the gym (I take notes, cheer him on, and participate on demand)
  
• 2:00 - 3:30 - Recreational therapy with Sharon (He wheels to the cafeteria, selects a yogurt flavor, I scoop.He holds the money so that he has to interact, figure out how much money to pay the cashier, and then we wheel out to the rose garden/sensory deprivation garden, admire flowers, practice closed sentences, sing, play pass the ball)
• 3:30 - 3:45 Head back to room for a chair-bed transfer (we have to wait for someone to help me get him into bed)
• 3:45 - 5:00 Quiet time - Nap/Visitors (at this point, I want to crawl into bed with him but this seems to be the time when the case manager/social worker tracks me down for some task I have to follow up on). If he's sleeping, I don't like to wake him because his brain needs rest - so if you visit then,
  
• 5:00 - 6:00 Dinner (which we take for granted but imagine eating in s - l - o - w motion and he is VERY focused on his food. Is that primal behavior?)
  
• 6:00 - 7:00 Recreational Therapy (with me or a certified RT) - Dominoes, Crazy 8, Old Maid, puzzles, etc.
• 7:00 - 8:00 Bath time (nurses wash him every other night so I wash him on alternate nights because I know he doesn't like to be dirty or stinky Bob)
• 8:00 - Lights out. This is the part where I tell him to close his eyes, remember I love you, to sleep tight, don't let the _ _ and he finishes the sentence and I'll be back in the morning

So as you can see, it's pretty intense. The schedule can vary slightly from day to day but but it's pretty much the same all week. Weekends can be slightly lighter but tomorrow is full . . . and yes, I'm in there with him. (Loma Linda believes that family support and participation is crucial for recovery so there I am.)
Thursday - April 30 was a super day in OT and PT for the Bob! He practiced dressing himself, cleaning up in a mirror). The morning OTs worked on transfers to and from toilet (yeah!) and he did well. Bob was awesome in PT! 4 PTs/OTs positioned themselves around Bob, strapped his bad foot, and then made Bob walk around the platform (size of two king size beds side by side), all the while coaching him to lean left/right, shift/balance his weight, tuck his rear, lift his head, lift his leg, step off. It was extremely challenging and all the while, they told him he could do it, shared their expectations for his success, praised him, told him to correct his movements (watch your foot, Bob; open your eyes, Bob). When he passed one side, they'd ask him if he thought he wanted to stop and he'd look at them, take a deep breath, and start moving again. It was pretty remarkable. It really looked like 4 angels surrounding Bob. Then they made stand in a kitchen and practice putting cups into the cupboards, but not just any cup. He had to pick the color they called out (multi-step directions) and if he didn't do it right, they'd have him take it out and start over. The difficulty is that Bob doesn't have use of his right side, so he had to remember to hold himself up, balance/shift weight while standing, reaching, and placing. He got it! Then they wet the counters and made him wipe them down (I like that part, Bob always used to tidy up for me). If only we would/could do this for every struggling child in our classrooms - put all of these resources on them immediately Wow! I thanked them for today's miracle and they said, "We love our jobs and we thank you for teaching our children." I LOVE the OTs and PTs! I LOVE BOB! Speech therapy wasn't as good for Bob and I could tell that he was perplexed that he couldn't read the sentences aloud (HELLO!) or answer her questions orally but after a few practices, he could point to the correct answer. She assured him that his reading would come with time and lots of work. He's told me which songs he wants to sing (I'll ask and he'll start singing the first words). The PTs and OTs said that he's a model student and we're the model rehab family. You know how Bob and I are overachievers - even in rehab. :)
Oh yes, cards, letters, and packages arrive for Bob daily (the staff teases Dr. Popularity) and he LOVES opening them. I wish you could see how happy he is - I just KNOW that he feels all of the love and support coming his way. Thank you all: Barry and Leslie for the napping kit, Michele D for the Healing Angel (which I put on his nightstand to watch over him), Lois W (for the chocolates that I and my sisters and mom gladly ate since he's restricted-whoo hoo!) Virginia G, I read the message in your card, to Bob, "Pamberi: Never Give Up" and he kept repeating it so I made a poster for his room so that he can see your words - okay, so he's not speaking English fluently yet but he can say a Zimbabwe word), Joyce W, Terry & Nina, Ken & Judy, Team DASD: Cindy M, Melissa W, Lizette, Sue, Chris; Dr. Jonathon, Ed & Peggy L, Sandi & Frank, Jan V, Arlene A, Audrey E., and Carrie (for the real elephant poop card - who else would give such a thoughtful card? I only washed our hands 500 times).

Friday, May 1, 2009was a down day. Very down. D (next bed) told me that Bob didn't sleep well. I was concerned with I left on Thursday night because he got so cold during his bath that his body shook and his teeth chattered but he didn't have a fever. Anyway, the new male night nurse didn't turn the heat lamp off all night (so it got to be blazenly hot and sunny) and Bob couldn't tell them so he didn't sleep, which meant he was sleepy and lethargic all day, he missed his breakfast therapy (I had overslept) and wasn't "on" or performing as well in his therapies. So I was disappointed and let's just leave it at that. Here's what he did do: he sang with me, tried to do everything his teachers asked even though he was exhausted, happily opened his cards and letters, completed closed sentences with me with about 75% accuracy. So I just have to remember what Jill Bolte-Taylor wrote in My Stroke of Insight: the brain knows when it needs sleep and heal, that Bob will have up and down days.

I think my saving grace is knowing that my family and friends are out there. Sonia and Mom (they can't come in 'cuz of flu) sent fajitas with Jeff who hung out with Bob (he always gets happy when Jeff comes over, even tonight when he was so tired). Josh cooks, cleans, packs lunch, takes care of my business calls/forms, stops in and spells me so I can get away from the hospital for a few minutes. He was supposed to go home yesterday and extended his stay thru next Wednesday when he has to go back for commencement. Shadi and Jeanie call and write every day and remind me that I can do this-BELIEVE Bob will recover. Dr. Bill arrived today and will go thru bob's medical chart with me on Monday so that I can see Bob's brain and understand better how the stroke is affecting his brain, and he's meeting with the docs on rounds. I got home tonight and the downstairs bathroom was torn out - drywall, tiles, shower. Jeff is on a roll creating the perfect bathroom and bedroom for Bob.

Dear Friends: Thank you, thank you: Rick C (and Gigers)-thanks for stopping by to read today (the day after yesterday, just like bob asked, even though he wasn't up to it; Pete, Walt, Bonnie, Beth, Melissa, Roberta, Gail #1, Gail #2, Laurie, Bryan and Terry Taco - for being persistent in touching bases and checking in on me and reminding me to take care of myself. I appreciate your thoughtfulness and it's just nice every now and then to have a two-way conversation although if you can believe it, I'm pretty talked out from talking to Bob all day long (poor Bob and now he really can't get a word in). And to everyone else who's contacted me via e-mail, home phone, facebook.

Oh, by the way, Becca Watson - have a wonderful wedding shower today! I REALLY would rather be there (and we all know how much I love showers but really, I'd go to every one now).

So, here's my request from y'all: Visualize Bob's brain healing, recreating new vascular pathways, new connections. Picture his brain switching ON. Pray for his determination and strength to continue.

May the Lorb be with you,

Sharon