Daniel's Update, Week 20


Saturday, September 14th, 2002 By the time we arrived Daniel was already dressed and ready to greet the day. He had managed to get his foot brace and shoes on for the first time solo. At this point it is tricky and time consuming enough that the shoes and brace didn't come off all day...even for naps.

We spent the morning hour having Teri read Harry Potter to us. Then it was time for me to take Teri to the airport while Daniel reported to his first therapy, Functional Communication Group. Apparently they did brainteasers and Daniel had a great time. My favorite group was the time the therapists read a Dear Abby column to the group and then asked what they thought about it. One of the members replied, "How do you expect me to have an opinion, I've got brain damage, I can't even remember the story." Humor goes a long way at Sunnyview..

More Harry Potter, lunch and Daniel had his second group, BUE. He is working with one pound weights and is the youngest member by about forty years. They do arm exercises for thirty minutes with minimal chatter. Daniel, with his Bison hat is more like their mascot..

The final group of the day was a brand new group, the balance group. Daniel and a man of about seventy-five played kick the beach ball to each other, hit the balloon back and forth, and catch the ball. This was done standing (where the balance part comes in) about eight feet apart. It had to be seen to be believed...Daniel's knees were killing him by the time it was finished and he was pantomiming tears to me across the room, (so I figured it wasn't that bad)..

Just as we were finishing, his friends from Bard arrived. Emilie, Peter, Beth and Kirsten. They spent time visiting in the lobby so as not to disturb Daniel's new roommate who is still quite ill. They brought Daniel a David Bowie tape and a Muppets Video. So great for Daniel to visit with Bard friends. Emilie is staying the night at Fisher House so she can spend time with him tomorrow. More friends will be coming by Fisher House so she won't have to hitchhike back to school..

We gave Emilie an unexpected tour of Schenectady (code for getting lost), while we searched for Burger King for dinner. We returned to the hospital to close out the day taking turns reading Harry Potter, showering and all the rest of the nightly routine. Tomorrow we have all day in Albany at Fisher House...yay! We may be boring but we're happy. Take care, Toni

Sunday, September 15th, 2002 With meds in hand we left Sunnyview around 10 a.m. and headed straight for Starbucks this morning (I will make as many sacrifices as necessary for Daniel). We lounged around listening to the music, enjoying the ambiance and having sparkling conversation (or two of the three, you guess which?).

We arrived at Fisher House and Daniel promptly crawled into bed, while I did laundry. Emilie hit the books in earnest (Bard studies) but soon I heard the two of them whispering and giggling just like little kids. Eventually Daniel and I ended up napping while Emilie studied in the sitting room. We ordered exotic (cheeseburgers) but ate in the dining room so it seemed fancy.

Bardians descended on Fisher House soon after and by the sounds of laughter coming from the other room they had a great visit. It's nice for me to be able to put faces to the names I have been hearing about for so long. One of the girls is a local Sierra Madre native. Small world isn't it? We also had a wonderful surprise visit from Annmarie, one of the great Albany Med nurses, and her son Jacob. They had been apple picking and brought us some of the best apple juice, apple doughnuts, and apples I've ever tasted. As a matter of fact Emilie brought us local apples too (we are getting very spoiled, but we don't mind a bit).

We had just enough time to read a chapter of Harry Potter before it was time to depart for Sunnyview. We grabbed fast food for the car (there was a definite theme to our meals today) and headed off in the rain. It was one of those famous New York storms where it looks like it has cooled everything off but it really just makes the air warm and humid. Or as my sister Sandi would say, "It's like walking into someone's mouth!"

The best news is that although we took the wheelchair, Daniel only used the walker all day. He was understandably proud...me too. May your Monday go quickly and restfully...all our love, Toni

Monday, September 16th, 2002 So it's Monday, so I forgot to set the alarm. Luckily the dishwasher woke me up by 8:30 (when I should be out the door) so I wasn't too late arriving, I even stopped for gas. Daniel was not in his room so I scoured the halls and found him in practicing climbing stairs with Kim, using only a cane and no handrail. Although the first try was a little shaky, (I thought he was going to tumble down the stairs he was trying to go so fast), his second try was much more controlled. Daniel reported he threw-up again this morning. This has been occurring about once a day for the past few days. They changed one of his medications to see if they can calm the reflux down. Even with all this he gained a pound last week...weighed in at a whooping 114.2. Our goal for next week is 2 pounds (Daniel, not me). Due to a snafu in scheduling PT (pool) and OT were scheduled at the same time. Kim and Tracy got together and Daniel had a combined session in the pool. Picture him lifting a "noodle" above his arms as if lifting weights...also lots of laughter as the three are all quick witted with rapid fire conversations. It is a joy to see Daniel get a chance to be playful. Tracy and Kim joked about their "baby bird" getting ready to leave the nest. Speech involved Mind Benders to make use of deductive thinking skills. Daniel brought one of the problems back to the room and I got caught up in solving it. Let's just say he spent 30 minutes on it (although he says he's not finished), while I spent about an hour and still brought it home to see if I can figure it out. Dee challenges Daniel in the best way. While Daniel was at Recreation Therapy I made a run to Starbucks for us. As I stepped off the elevator his Rec therapist, also Kim, was coming down the hall with Daniel. They had been doing brain teasers and asked me the following. "A man lives on the 10th floor of an apartment building. Every morning he takes the elevator down to the 1st floor. In the evening he takes the elevator to the 7th floor and walks the rest of the way. Why?" Good luck to all of you...I asked what I considered many insightful questions but finally had to be told the answer. (Maybe this means Daniel will be discharged on the 28th but they'll keep me.) The day came to an end with several chapters of Harry Potter. All in all a successful, not stressful day...especially for a Monday. Love to all, Toni

P.S. Speaking of Daniel's discharge date. He will leave Sunnyview on September 28th, but come stay at Fisher House until we can have the bone plate replaced, and possibly schedule the surgery for the tear in the aorta. He will continue to do outpatient rehab at Sunnyview about three times a week. Medicaid, insurance and so many variables play a part in keeping us here. It is not our first choice but the one that in the long run makes the most sense.

Tuesday, September 17th, 2002 Toni said she was very tired tonight and will post an update tomorrow.

Wednesday, September 18th, 2002 Now that I have had a good night's rest I will try and make a coherent report:
Yesterday Daniel began the day in good spirits. He went to PT where they did mat exercises but apparently part way through the session Daniel got nauseated. His therapist, Kim gives him the award for "holding on" as she raced around the gym looking for a container for him. We figured it was because he had a late breakfast and then was lying flat on the mat. However, he threw up again after lunch so he is back on clear liquids until they figure it out. He had a stomach x-ray, they are checking his calcium and drawing blood to run a complete panel. He still kept his sense of humor and had a full day of activities.

For PT Daniel has graduated from one pound to three pound weights on his legs and in BUE (building upper extremities) from one to two pound weights. They have promised him that he can have a ride on the "tilt table" before he leaves so he is very motivated.

In Speech they are working on more mind benders. He got a mind bender for homework (math based) and Dee even sent one for me (not math based). Dee's instructions to Daniel were to take breaks when he gets frustrated. When quizzed Daniel admitted his to this point has been to grit his teeth and start guessing. This will stun you but his technique only increases his frustration. (And I'm trying to remember if this is a result of the accident or part of his personality...I remember just a touch of "stubbornness" from growing up.)

More lateral thinking problems were tackled in Therapeutic Rec. Those of you who answered were correct. Jim's response when told the answer was, "Well, he's not a very bright short person...why doesn't he just get a pencil so he can reach higher?!" Today's new problem: Two sisters were cleaning a shed at the bottom of the garden. When they were finished one sister had a dirty face and the other a clean face. Only the sister with the clean face washed hers. Why? (I didn't even come close with this one, even with hints.)

Highlights of the day included a phone call from his sister Emily, Jim, and Ms. Rapkin. We watched the video "Sweet November" after he showered, and as I tucked him into bed his eyelids were already drooping. I didn't arrive back at Fisher House until after 10:30...hence, the late update. A long but satisfying day. Love to all, Toni

Wednesday, September 18th, 2002 The morning began with a visit from Edith Leet who we met through Roy Donkin (the minister who moved from Albany to Santa Barbara). She stopped by with an unbirthday bag of goodies for Daniel and we had a nice visit. After typing yesterday's update this morning (pushing deadlines is a habit of mine), I was running late.

When I arrived I found Daniel grinning from ear to ear, in bed, with chocolate crumbs all over his shirt. Seems he had already been to PT twice, threw up his breakfast of cream of rice, but had recovered enough to eat a hostess cupcake. (This is proof he is a true Fox family member.) Seems a care package had arrived from the Arizona Foxes, Jim's brother Clark's family in Mesa, Arizona. It was a shoebox filled with snacks and treats that Daniel couldn't resist. Not only did Daniel manage not to throw up the cupcake, he was able to share his bounty with the staff. A letter from K.C., who is in Budapest doing a semester abroad with Bard, made his morning complete.

He opened the unbirthday present and discovered all kinds of goodies; whistles, wire gadgets, Harry Potter folder, Pez dispenser, etc. There was also a bag of buttons with sayings on them. Daniel immediately chose the, "This Smile's for You" button to pin on his shirt. He had great fun passing out Pez and offering a choice of buttons to his therapists and other staff for the rest of the day. He even has some left to give away tomorrow. This fits in well with our goal to reach out to others during the remainder of our stay at Sunnyview. Everyone has been so good to us, we want to do the same.

In PT Daniel did more mat exercises with leg weights, and stood up without using his hands on the walker. This is a good indicator that his leg muscles are getting stronger. For BUE, the upper body strength group, Daniel said two of the elderly women fell asleep in their wheelchairs...enough said.

In Speech Daniel and Dee tackled, "Vocabulary All College Students Should Know" for the first session, and worked on word puzzles in the afternoon. Daniel gave both activities a thumbs up. (He was getting a breathing treatment or I'm certain he would have used some of those vocabulary words to describe his experiences.)

Pool time included the backstroke, or at least a facsimile of the backstroke, walking on tiptoes, and a collage of Michael Jackson moves. I have been promised some water ballet from Daniel and Kim before we leave if I provide the hair gel and nose clips.

Daniel can now move his arms straight above his head thanks to OT. When we first arrived at Sunnyview he could only get them to his shoulders. He felt a little sick at the end of his therapy session so Tracy walked him back to the room and did her interpretation of "Maniac" from Flashdance for him...(I don't think he was really sick, I think he just likes the attention).

We took a stroll outside to enjoy the crisp, fall air after dinner. The leaves are beginning to turn and the next two weeks we hope to see all the fall colors. This is the season I have really missed since moving to California and it is wonderful. We closed out the day with shower, meds, Harry Potter and Diana Krall. We miss you, we miss California, and we send our love...Toni

Thursday, September 19th, 2002 The computer was down last night which explains the delay in the update. Tonight I will try and be brief since I'm doing two reports (oh sure, you say):

Daniel spent his first hour this morning in Neuropsych being tested on attention and memory...but this time he felt smart! I really don't care if he got any of the answers correct...as long as he feels good, that works for me.

In his BUE group no one fell asleep today which was the most exciting news. Oh, and he has graduated to 3 pound weights. Each member is going to lead the group one day next week and Daniel gets to start. It should be interesting--music perhaps?

Daniel and Dee spent the day talking about music (she also has a musical background). His next assignment is to write a paper on how music affects the way he thinks. The Recreation Therapist has offered to let him use her computer so the process won't be so labor intensive...and will also be legible. I'll be interested just to have any clue to how he thinks!

Tracy had Daniel on a mat and spent the time pulling on his arms to stretch his shoulders. Daniel loved it! He said it was so relaxing. He's trying to increase his range of motion and I think he's made good progress.

For his field trip to Albany Airport the doctor prescribed some medicine to address the nausea. Not only did the trip go well, they stopped at Wendy's on the way home to eat. I don't know how Kim and Ruby (recreation therapists) felt about the adventure but Daniel was in great spirits. He especially liked having Ruby sing in the van. He found out that when he is ready to fly home we must be at the airport 90 minutes before the flight, notify the airlines that he will be bringing a walker, arrange for transport to and from the gate, and have a doctor's note explaining he has nuts, bolts and pins in his legs (he is certain to set off the security alarms). He actually thinks the security alarm part is pretty cool.

Kim walked Daniel back to the room after PT. They wanted to show me something special...Daniel pushed the walker away and walked on his own! It brought tears to my eyes. Apparently he wanted to try walking, so they started in the parallel bars and then he walked nearly 60 feet around the gym. Daniel's comment, "I feel so liberated." He still needs the walker because of fatigue and aching knees but it is still amazing...

The rest of the day is a blur...Take care all, Toni

Friday, September 20th, 2002 I arrived to an empty bed with an armload of clean clothes for Daniel. After checking the schedule board I knew he was in Speech with Dee. Pretty soon he came walking down the hall with a big grin on his face and singing tunes. Apparently he had a good night's sleep and was just in an upbeat mood.

He cruised without his walker again in PT and practiced climbing a flight of 10 stairs. Although it isn't fast or pretty, it is such an improvement from last week. His knees seem to be the biggest hindrance so the rest of the session was spent doing exercises to stretch his knees...and trying to stay focused. It really is hard when you see three or four other patients, who are working at the same time, not to stop and cheer them on. We all get excited for each other's successes.

For pool time I played DJ and put on some Carole King and India Arie. Big improvement from some of the music on hand. Did you know Jim Nabors had a greatest hits tape? (A collector's item, no doubt.)

We had time to read some Harry Potter and microwave a pizza snack before OT. (He seems to only be throwing up breakfast, so they are going to put him back on an anti-nausea medication mornings only.) The afternoon included more stretching in OT and a massage we scheduled through Sunnyview. I walked Daniel down to his massage and went on to the gym where I used a treadmill (my goal was to keep up with the 87 year-old woman next to me without gasping). When Daniel returned he was beaming. The therapist worked on his shoulders, neck, back, arms and legs and he said it was wonderful. I had a massage yesterday and I agree! (It sounds like we're at a spa, doesn't it?)

After dinner we watched some TV and put a few pictures in an album that his nurse, Kathy, gave him this morning. She is one of his favorites and she included stickers, tape and page protectors. We had just picked up a couple of rolls of film and most turned out really well. I'll be sending them to Jim so he can have Mary Ann and Jeff put a few on the website. Time flew by and we had to hustle to get him a shower and meds before I left. We both send you all our love and may you have a relaxing weekend. Love, Toni


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