Heal Nick

Prayer DOES work! Good news, Nicholas…..Margie and I plan to visit you soon. Love, JoAnn

Nicholas had another great week. He is currently considered medically stable, which means he is in balance with his meds. As a result all he’s doing right now at Spaulding are the various therapies disciplines. He’s core strength continues to improve and he’s able to walk quite well for short periods with minimal assistance. His appetite gets better and better and there’s now consideration being given to removing the feeding tube in the near future. His speech therapist is very encouraged, as he’s now able to count 1 to 10 (He did it for me in Spanish the other day!) and recite the days of the week. We have also found he is able to express his thoughts a little more clearly and consistently. As a reward for this good progress, the recreation & occupational therapists took him on another “community outing” and went to the movies (Longest Yard). To cap off the week, we took him on his and our first “family outing” on Friday, which consisted of a short car ride to Kristin’s apartment where we sat out in her back yard for about an hour before returning to Spaulding. It was great to get him away. If all continues to go well, we will be planning more and longer periods away from the hospital.

Hi Nick and family.
Great to hear that things are going well for you Nick.
A huge thank you for the wonderful gift you gave us.
I have just taken someone out of the
unit for the first time in this fanatastic new chair, and
they loved it. It has made this person more calm as
you know being stuck in a bedspace in ICU is very
frustrating. It gives people more hope and postivity.
Hope your wonderful progress continues,
Jo Robertson (RN)

I am pleased that your recovery is progressing rapidly.
Cicely Lyman Dulgeroff

It’s very late Sunday night, actually early Monday morning, so I’m going to keep this short. As you know, the surgery scheduled for late in the week was postponed due to the good progress Nicholas has been making over the past 10 days both physically & cognitively. His neurosurgeon feels that Nicholas has re-equilibrated and does not want to interrupt any positive development. It would take him about 2 weeks to totally recover from an operation. The operation will happen sometime but not in the next couple of months, unless necessary, which would be dictated by him reaching a plateau in his cognitive advancement. We are beginning to see some real initiative in attempts to spontaneously convey thoughts, although his sentences don’t make a great deal of sense, and to use his voice more and more. He has also taken it upon himself to start roaming around the hallways in his wheelchair. He was caught trying to “escape” through the security doors the other day. We love seeing and hearing about this type of activity. It’s a very positive cognitive advancement.

nick,
i have officially finished my first indiana university course. thank god that one’s over. i feel an awkward sense of relief knowing that it’s done but that in just 4 days i start grad school!!! you know me, i work insane hours and always have. i’ve gotten used to the crazy work/class/homework schedule i’ve been keeping for the past 6 weeks and now that i have TWO WHOLE AFTERNOONS free, i don’t know what to do with myself. i’ve been playing with woody a lot and sleeping a lot. but i really wish i could come hang out with you a bit. too bad there are about 1000 miles between that actually happening. someday i will be rich, don’t ask me how because i have yet to figure that one out, but i will be, and i will be able to randomly fly to wherever in the world you are at the moment and have dinner with you, or just hang out for a few hours and then head back home, wherever that will be at the time. well, let’s see, if i’m rich, chances are it will be some small hut in the middle of nowhere. hey, i can’t be rich if i spend all my money on a huge house, right? i knew you’d understand. or better you get rich and fly to me love you, man.
obviously i miss you and think of you all the time.
have a good day.
hugs and love
jess

Due to the good progress Nicholas has been making for the past 10 days, surgery has been postponed.

you have been making great strides nic understand you have taken up bowling must be pretty good to bowl sitting down could be you are starting a new trend paddling on the charles sounds almost ritzy couldn’t be better than buzzards bay i’m sure thinking of you as always much love “ole grams”

This has been a very good week for Nicholas. It would appear that he’s fully adjusted to his meds and has no infections. Cognitively he’s making much more of an effort to speak. He knows what he wants to say but the words, most of the time, are unintelligible. However, we are hearing a stronger voice. Physically he continues to make good progress and requires minimal assistance getting in and out of his wheelchair, standing, etc. He’s no where near being on his own moving around. This will come as he continues to build up his core strength. His appetite suddenly appeared this week. He’s now eating the requisite 3 meals daily along with supplemental nourishment through the feeding tube and has gained around 4 lbs since his last weigh in. For recreational therapy (a new discipline) Nicholas had his first community outing and went bowling, which, although not a bowler, he seemed to enjoy. Not only was a good for him to get out and about, the physical therapist said the actual act of bowling was very good for his coordination and development of trunk strength. He also got out on the Charles again in the outrigger canoe and did better than last week paddling. Unfortunately with all this week’s progress, he’s been rescheduled for surgery on Thursday (see Parent Posting of May 29th and June 1st). So, get ready with your mind sparks on June 16th.

Nick,
To balance off your pretty chill week last week, I will tell you about my crazy weekend. First all last week when I got back from Boston, Woody, yes another dog story, was pretty sick. I won’t go into details but I’ll say that he was on meds, not eating a lot and very sleepy, just not himself. Saturday night he ran out the door and up the hill and disappeared. The first burst of energy in a week and he runs away. He’s notorious for running away, but it usually happens in daylight hours when someone can see him, stops to get him or he runs right up to the next person he sees. Luckily he’s a friendly dog. However, this was midnight, very dark, and he doesn’t like coming to his name when he’s outside. We think he thinks this is a game. We looked all around and couldn’t find him. Of course I was distraught and not realy sure what to do. So I left messages for the nearby animal control offices, cried and went to bed. Sunday I had to work but before work I made flyers and posted them in a few stores near the house. Drove around looking for him some more and then went into work. Now, this whole time I’m thinking that if he goes up to someone they’ll call because he has tags, so I knew he hadn’t found anyone yet. We live on 12 acres of land and I was worried he was running around in the woods. Well, indeed, he was. Monday morning he ran up to a woman outside of her house SIX MILES east of where we live. I was so excited. So that was the weekend. Very glad he’s home. And very glad his tags are easy to see/read. She said they were great.
So, all in all thinsg were good, but hectic for a while. You know me, I like to stay busy, so I guess it wasn’t too much of a surprise that I had extra to do and think about all weekend.
Other than that I am finally getting to the end of this summer writing course I’m taking. It is so horrible. So, for a writing class wouldn’t you think you would end with a bit paper? Yeah, me, too; however, we are ending with group projects, and my group… okay, I’ll be nice here… they aren’t very dedicated to the class. So, I’ll be gald when that’s over and I get started on my grad courses.
On that note, I need to get to some work for that presentation. Hope you guys have more good weather out there this weekend so you can hang out in the sun, well, for you in the shade (he he), but you know what I mean.
hugs and love
-Jess

There is not too much to report for this week. We were prepared for surgery; however, as previously posted, this has been postponed to a date yet to be determined. The good weather allowed Nicholas outside for extended periods of time & lots of fresh air and sun. He’s been quite mellow since returning to Spaulding from the “day trip” to MGH. He did get out on the Charles for a couple of hours in an outrigger canoe. Spent most of the time not pulling his weight with the paddle and watching the sun bathers on the banks of the Charles. Good for him. Why not? This was followed by a quick sail on the adapted windsurfer, which ended with a gear failure. He’s now eating 3 meals a day, supplemented with feeding through the tube. Hopefully, this routine will evolve into just 3 meals and little or no use of the tube. Again this is progress in very small steps.

I realize this is not Sunday and my usual time for this posting. Just wanted to advise all out there that the surgery scheduled for today has been postponed. Nothing to worry about at all. It was a good decision and the surgery was not urgent. We do not yet have a new date.