April 2010
4/1/2010 Day 34 of Jonesy’s Journey-Jonesy wants to move his hands and arms so desperately. I told him, it’s not for lack of prayers, just look at the numbers…. 3,895 devoted Jonesy followers praying daily.
4/2/2010 Day 35 of Jonesy’s Journey-Chopper, Toni, George, the Micelli’s and Big Brother Les all making the round trip journey to Kessler and back today. Chopper and I hit the gym with Jonesy- 90 minutes of just arms- a pulley system lifted his arms but he had to do shrugs in order to make it work-very cool contraption.
4/4/2010 Day 37 of Jonesy’s Journey-A steady flow of visitors including Mom and sister Kim-just made his day. I feel secure leaving him knowing he is enjoying the visits of good friends and family. So that's my new schedule leave Kessler on Fri and return Sun-started house hunting in Delmar-all I have to say is ugh!ugh!ugh!
4/4/2010 Day 37 of Jonesy’s Journey-Happy Easter to all-thanks for the well wishes. Today, Jonesy went outside for the first time in 5 weeks and one day. We enjoyed the sunshine out on the patio with wild woman Lil tearing up the place. Biggest news flash of all: Jonesy gave me the best Easter present: his right bicep twinged!!!
4/5/2010 Day 38 of Jonesy’s Journey-Mellow day, Jonesy was in a post-jelly bean binge hangover all day. I broke my own rule of “never let him see you cry” and realized what a silly rule it was.
4/5/2010 Day 39 of Jonesy’s Journey-An extra hour of workout time tacked on to Jonesy’s gym schedule today to determine if that bicep is moving for real-only time will tell—so, extra OT and some electrical stimulation is ordered for the next few weeks…go Jonesy go.
(posted 4/7/10) 4,000 members strong today! Jonesy says......"I couldn't do it without the prayers and the pushing of all 4,000 people and my love goes back to them" (in no way edited, or teacher-ized by me)-his own words right to his Facebook fans!
4/8/2010 Day 41 of Jonesy’s Journey –Jonesy has been off the vent 24 hours a day for a week but is still on “vent status” (he can’t go anywhere without a giant cart following him) he won’t wear his sleep mask at night so we struck a deal: I’ll sleep in the chair and watch him sleep with his mask on, when he wakes up, if I’m still in the chair- he’ll wear it every night-no fussing! Then he’ll be one step closer to being off vent status.4,000 members strong today! Jonesy says......"I couldn't do it without the prayers and the pushing of all 4,000 people and my love goes back to them" (in no way edited, or teacher-ized by me)-his own words right to his Facebook fans!
4/9/2010 Day 42 of Jonesy’s Journey-Thanks John S for keeping Jonesy company all morning while I zipped back to Albany. I was cleaning out the basement, John called with orders from Jonesy- do not throw anything out! (That includes the 81 rolls of electrical tape I found!)
(posted 4/9/10) I won't be back to Kessler until Monday- Jonesy needs some visitors on Sunday-it's a long day no therapies- a few folks popping in here and there would be great.
4/10/2010 Day 43 of Jonesy’s Journey-Jonesy wants to thank the Rugby guys & families who cleaned our lawn Wednesday and his Thruway buddies who hauled out a dumpster worth of basement treasures today. (Yes, the bike was saved-it's waiting for Jonesy's miracle)
4/11/2010 Day 44 of Jonesy’s Journey-4/11/2010 Day 44 of Jonesy’s Journey-Many thanks from Jonesy and Lisa to the Australian for hosting last night's fund raising event in NYC. Jonesy was the captive audience of father-in-law Pete for eight hours of watching golf and eating Italian pastries-tough day.
4/12/2010 Day 45 of Jonesy’s Journey-Jonesy's arms went for a skateboard ride in physical therapy today. Kind of like making a snow angel, but on a mat, without snow.
4/13/2010 Day 46 of Jonesy’s Journey-Today's electrical stimulation made Jonesy's hair stand up (on his back) haha...
4/14/2010 Day 47 of Jonesy's Journey-Jonesy is wearing his wristband today- thanks Marty, Larry and Jaco for the visit. Jonesy says "I'm still going forward".
4/15/2010 Day 48 of Jonesy’s Journey -Jonesy has been fighting a fever all day and tonight he had a scare –he was having trouble breathing, the call bell was not next to his head, he started yelling for help but the door was shut by accident so no one heard him- according to Jones “I couldn’t kick, I couldn’t pound my arms , even though my mama didn’t raise no sissy boy, I finally screamed like a woman” - he has been on oxygen the remainder of the night-that’s enough excitement for this evening.
4/16/2010 Day 49 of Jonesy’s Journey-No fever today-I watched Jonesy push it hard during therapy-they kept him an extra 30 minutes to try to move that bicep-I left Jonesy in Denise and Jaco's hands this afternoon-haven't heard from the authorities they must have behaved or they haven’t returned Jonesy from happy hour yet.............
4/17/2010 Day 50 of Jonesy's Journey-Jonesy reported a great visit with his mom, sisters and Rose. He snacked on calamari and had a manicure.
4/18/2010 Day 51 of Jonesy's Journey-Liliana returned after a two week hiatus to make her daddy smile. I held the phone up to Mike's ear as he said hello to an old friend-Dave said "you sound like you" Jonesy replied, "I feel like me". That's our boy.
4/19/2010 Day 52 of Jonesy's Journey-Jonesy's feeding tube was officially removed today-another step forward.
4/20/2010 Day 53 of Jonesy's Journey-one step forward, two steps back-Jonesy has his first (and we hope only) pressure sore-he is being sent to bed at this moment.
4/21/2010 Day 54 of Jonesy's Journey-Jones test drove a power wheel chair using a toggle switch in his mouth to drive. Extra OT&PT today. Jonesy says sorry to his visitors-they made a long drive for a very short visit-he was wanted by his doctors and was whisked away.
4/22/2010 Today is Jonesy's 37th day at Kessler. per insurance, we were given 60 days at Kessler (acute care) and 45 sub-acute care days (nursing home) Michael's doctor thinks it's medically necessary that Jonesy convert those 45 days of sub acute care to staying put at Kessler where he can continue to progress- it is the doctors view that perhaps he can gain enough function to use part of his right arm. We are hoping the insurance agrees with the Dr. -no decision has been made yet-we will keep everyone posted on the decision by next week.
4/23/2010 Day 56 of Jonesy's Journey-Jonesy reports his pressure sore is healing and his therapists remark for a c3 quadriplegic Jonesy is progressing well because he is so strong. (Strong, like bull)
4/24/2010 Day 57 of Jonesy's Journey-Jonesy reported a day full of visitors. He should sleep well tonight.
4/25/2010 Day 58 of Jonesy's Journey-We are hoping tomorrow brings us good news-Michael needs as much rehab as possible-let's hope the insurance company agrees.
4/26/2010 Day 59 of Jonesy's Journey-Jonesy tested another power chair using his mouth-this time he navigated through cones-didn't hit one-must be all that NYS Thruway training!
4/27/2010 Day 60 of Jonesy's Journey-Liliana sang some Beatles tunes to her dad over the phone tonight.
4/28/2010 Day 61 of Jonesy's Journey-Fifth day I am home in Albany trying my best to take care of an overwhelming amount of business-can't thank the "scheduled visitors" enough for being my eyes and ears this week.
4/29/2010 Day 62 of Jonesy's Journey-Tom Petty said it best...
The waiting is the hardest part
Every day you see one more card
You take it on faith, you take it to the heart
The waiting is the hardest part
4/30/2010 Day 63 of Jonesy's Journey-Seriously folks if I really told you the whole truth and nothing but the whole truth every day you would turn off the computers......needless to say I will start the appeals process on Monday with CDPHP in order to get Michael the continuing care he deserves at Kessler. I spent three hours at CDPHP HQ today...with a video camera (thanks Jay) that is a story for another day...............