Heal Nick

Nicholas started working with a LiteGait (http://litegait.com/) device this week in PT, which over time should help with some or all of the following:

# control weight bearing and posture to correct asymmetric movement
# prevent excessive forward lean
# train symmetric gait patterns for patients with one sided body weakness
# facilitate proper gait patterns
# work on symmetry and weight shifting
# train coordination without balance concerns
# manually assist limb placement
# facilitate proper hip alignment

Hello Nick and the Robbins family!!!
I saw Nick’s name in the Pingree update and wanted to reach out to him. My name is Matthew Feingold and I attended Pingree with the great Nick Robbins and wanted him to know that I am thinking about him and the entire Robbins family. I am truly so sorry to hear of Nick’s accident.
I am in outside sales and on every other Thursday I am in Marblehead and was wondering if Nick would like any visitors? If so, I would love to give my well wishes in person, if not, I understand but hope these words find him and he knows I am wishing and praying for the best for him.
My number is 617-767-4414 and I will be in Marblehead in a week from this Thursday (8/19/10) so please feel free to give me a call anytime!
Again, I am so sorry to hear about Nick and if there is anything I can do, please do not hesitate to call.
Thank you for your time,
Matthew Feingold

It’s been a big day for Nick. After 5 1/2 years since his accident and through the use of Phonics in Speech-Cognitive Therapy, he read is first simple sentence today. I can only assume as the connections are re-established reading will eventually be a constant source of enjoyment for him.

Nick had a couple of seizures about a month ago and he’s bounced back in a relatively short time. He’s enjoying summer. Take a look at the Photo Gallery.

This is worth sharing from Nick’s music therapist:

I saw Nicholas today. It is always such a pleasure! He keeps learning. It is so great to see. He remembered the chords to Franklin’s Tower (A major and D major) without any help. Is he
…retrieving a lost memory or learning something new- I don’t know. But in any event he can now play that song at home on his own. I will keep working on showing him other songs and new chords. I’ve also started having him look through books and making up songs of what he sees happening.

A few positive changes have occurred since the last posting. Nicholas’ massage therapist has started using Primal Reflex Release Therapy (PRRT), which has resulted is a greater range of motion, especially in areas affected by his hamstrings. For a change of pace he is doing a 10 week Palates program in lieu of weekly work-outs with Rob Gagnon, his personal trainer. Finally, his cognitive therapist has him playing Monopoly in order to engage his multi-level reasoning and Nicholas is good at the game. This is big!

With Nicholas’ PT’s blessings, he starts a 1 on 1 Pilates class tomorrow and will do this for the next 10 weeks. This should prove to be a very good “carry through” of the work Nicholas is doing in physical therapy.

Rob Gagnon, Nicholas’ personal trainer, is running in the Boston Marathon for Spaulding Rehab Hospital and in Nicholas’ honor. If you want to donate to a good cause, check-out http://www.firstgiving.com/robgagnon.

Nicholas’ cognitive therapist now has him playing various learning skill games, requiring him to reason and communicate on multi-levels. He does very well explaining English language idioms, which evolve into interesting discussions. All leads to a greater comfort level in normal conversational skills. And a happier more contented person.

Nicholas’ Speech/Cognitive Therapist has him playing a board game called From Rags to Riches to improve his executive functions. The game centers around explaining the meaning of (translating) idioms. He’s doing very well & having a great deal of fun with it. I never realized how many idioms there are, many we take for granted. Think about it sometime when you’re having a conversation.

I’ve finally realized the power of facebook and its potential for helping Nicholas expand his communication skills. It’s also a great tool for his “friends” & “fans” to stay in touch. Nicholas now has a facebook page. However, in order not to present the wrong impression, it is set up with restrictions and will be maintained by his family. We have also created a “fan page", Nick’s Life. So, for everyone out there who are on facebook, Nicholas looks forward to having your postings read to him. We will do our best to have Nicholas respond (we enter his verbal messages).

I will continue to post to this webpage from time-to-time for those who have have resisted the facebook urge.

We’re having a great time with Nicholas and his communication skills, which seem to improve week by week. We’re also witnessing some pretty good evidence from time to time of an increased short term memory. This is fun!

Wishing everyone a very Happy & Healthy 2010!

Updating on 1/3 and adding photos of a doting Uncle Nick.

Nicholas continues to make very good cognitive and physical progress. His therapists should be very proud of what they’ve accomplished working with him. In the spirit of the season, we continue to be extremely thankful for all they have done and continue to do with Nicholas and wish everyone a very Merry Christmas.

I was told at the beginning of Nicholas’ recovery that we would have a pretty good idea how far he might go between 5 and 7 years from the time of the injury. He’s a couple of months short of 5 years and we’re seeing some extremely positive indications that he’s becoming much more mentally aware and now more than willing to express an opinion or make an observation. We are definitely experiencing the beginning of the culmination of almost 5 years of therapies. Go Nick!

Just for fun and exposure, I took Nicholas to a Mexican cuisine cooking class earlier this week. He had a great time mixing ingredients and cooking. As a result we made chimichangas today and they were delicious. Take a look at the budding chef in the Photo Gallery.

Yes, it’s been almost a month since the last posting, but the only “news” to report is that Nicholas continues to improve his communication skills. I think the more we’re away and leaving him to his own devices, the better he gets. It’s somewhat similar to doting parents restricting child development. Fortunately, we’re realizing this and the results are great.

Had a great session on the practice range today, working on balance and coordination. Take a look at the Photo Gallery

At times we’re so close to Nicholas and in his presence daily it’s difficult to notice the small improvements. After a 3 week sail, I came home and immediately noticed a more observant attitude with an increased ability to join conversations and interject thoughts, using complex sentences. Plus, these seems to be an elevated sense of humor. His physical stamina has also increased and he did over 40 continuous minutes on the treadmill Monday!

Nicholas is thoroughly enjoying the time on Cape Cod and the change of pace. The weather has been very hot and humid. Take a look at the recent pictures in the Photo Gallery to see how he combats the elements.

Yes, it’s been awhile since the last posting but the summer weather has finally settled-in and Nicholas is taking full advantage. There are a number of new photos uploaded to the Photo Gallery. You will notice with an awning recently installed on our deck, Nicholas is now able to spent more time outdoors without getting scorched by the sun. We are currently at our place on Cape Cod for a couple of weeks. The pace changes here and Nicholas is more relaxed and feels much more “at home". The transformation is very noticeable and positive.

As you may recall, Nicholas went through a bad period about 3 months ago, when he regressed to a level he was at a year ago. The reason has still yet to be determined and at the rate the doctors are proceeding, it may never be. The good news is he seems to have fully recovered cognitively, as evidenced from his last two speech therapy sessions. So, it’s time to enjoy the summer, which appears to have finally arrived in Massachusetts. We have reduced therapies for the remainder of the summer to give him a break and allow more time for other pursuits. And, we are looking forward to a couple of weeks on Cape Cod, where he can really relax.

Finally! A beautiful summer day in New England and we tried to so everything, a bit apprehensive the good weather may change. Nicholas was obviously happy about being on the boat and ended today with a jam session with anew friend. Check-out the Photo Gallery.

Nicholas has come a long way back since he regressed about 2 months ago. Take a look at the Photo Gallery. The quality of the pictures is poor, but you’ll get the point. Why this happened is still a mystery. He had a very good appointment with his neurologist this week for the purpose of trying to find a reason for the set back. As a result CT Scans done in 2006, 2007 and 2009 (2 weeks ago) will be compared and evaluated by his neurosurgeon. In addition very specific blood tests were done with the results forthcoming. Stay tuned.

Though there is not much to report, I thought it best to at least get the Memorial Day information archived.

Nicholas continues to struggle with minor fatigue, weakness in his legs, balance issues & some cognitive confusion. However, his sense of humor is improving. This could be a hydrocephalus issue. He had a CT Scan 10 days ago & we’re awaiting the report. It’s somewhat frustrating not having a diagnosis. In the meantime he continues to do all his therapies.

Nicholas has been going through a rough 3 weeks. Blood tests have been negative. No answers. My gut instinct is he’s been affected by all the pollen and he should begin to improve.

Thought you might be interested:

Memorial Day was officially proclaimed on 5 May 1868 by General John Logan, national commander of the Grand Army of the Republic, in his General Order No. 11, and was first observed on 30 May 1868, when flowers were placed on the graves of Union and Confederate soldiers at Arlington National Cemetery. The first state to officially recognize the holiday was New York in 1873. By 1890 it was recognized by all of the northern states. The South refused to acknowledge the day, honoring their dead on separate days until after World War I (when the holiday changed from honoring just those who died fighting in the Civil War to honoring Americans who died fighting in any war). It is now celebrated in almost every State on the last Monday in May (passed by Congress with the National Holiday Act of 1971 (P.L. 90 - 363) to ensure a three day weekend for Federal holidays), though several southern states have an additional separate day for honoring the Confederate war dead: January 19 in Texas, April 26 in Alabama, Florida, Georgia, and Mississippi; May 10 in South Carolina; and June 3 (Jefferson Davis’ birthday) in Louisiana and Tennessee.

Hi Nick,
We have never officially met. I was the doctor who along with my nurse wife found you by the roadside in Queenstown. We were wondering how your progress was going. We have an email address which is nortona@adam.com.au We would love to hear from you or your family. We hope things are progressing for you all.
Kind regards,
Dr. Alisteir Norton and Vanessa Charter (From Adelaide South Australia)

Last week we decided to try something new to enhance Nicholas’ recovery, holistic neurology:

“Holistic neurology protocols are hands-on techniques that enhance the energetic flow in the skeletal system, nervous system, energy meridians and chakras. The result is integration between the human spirit and the physical body.”

This is a bit of an experiment that has no downside and, hopefully, some positive results. The doctor, who received his degree in conventional medicine, has never, as far as I know, applied his practice to someone with a traumatic brain injury but is willing to take things slowly and cautiously. One of his goals is to free-up those parts of Nicholas’ body that are in a protective posture, characteristic of a traumatic injury, and get them into a recovery/healing attitude.

I don’t begin to understand holistic practices and am looking forward to learning what I can. We are also excited about integrating this with all of Nicholas’ conventional therapies.

HAPPY BIRTHDAY to Nicholas on May 1st! 38 years old.

Not sure quite what’s going on. Nicholas has become extremely deliberate and cautious in his physical activities. More than normal. Cognitively he appears to be OK. ‘Tis the season and this could be caused by minor allergies. Just to be sure we’ll run some tests. Hopefully, this isn’t a result of a shunt malfunction.

The purpose of this posting has been to inform “Nick’s World” of any extraordinary events affecting his progress or any observations from a caregiver’s perspective that might motivate others. At this point in Nicholas’ recovery all is pretty much status quo. Progress is very subtle, and I suspect there will be no major break-throughs in the foreseeable future. The therapies are now more focused on a repetitive process to establish neuro connections. Unless there is a public outcry from those reading this for weekly inspiration, I am only going to do a Parent Posting when I have something remarkable to report, profound to say or otherwise inspired. I hope this will add a new dynamic to this posting.

All’s well. Nicholas is smiling, as he continues to work hard with a great attitude.

Nicholas had an awful cold the week I was away and wasn’t able to do any of his therapies. He was pretty much over it when I got home and back into his routine. I don’t have any particulars to report, except he seems in fine form now.

Today was the first fairly warm day here and he took full advantage of spending as much time outdoors, soaking up the sun so his body can produce Vitamin D and Serotonin. Take a look at the smile in the Photo Gallery.

Cognitively Nicholas has been working on speaking in simple and compound sentence structures. Through out the week he was asked to explain his actions in full, comprehensive sentences. To create a little fun we play Simon Says, where he has to give commands in also in full sentences.

Physically he continues to work on his balance and hand-eye reflexes. Today being relatively warm, he took a fairly long walk, practiced standing without assistance and worked on his hand-eye reflexes. See the pictures posted to the Photo Gallery.

There will be no posting next Sunday, as I will be out of the country.

I was away all last week. Consequently, there is nothing to report in detail. All reports from the week were good. It’s always energizing to get away and at the same time to return to see how Nicholas has done in the absence. Progress inches along.

I’ll be away on Sunday, departing Saturday, so the posting is a few days early.

Nicholas is slowly attaining a goal set a few years ago: To be walking primarily with a cane by October 2009. He may not make it by then but he’s certainly trying very hard and getting more comfortable. As always pictures speak for themselves. Take a look at the 2 photos posted on the Photo Gallery.

Not much to report on for the week except Nicholas achieved a personal best on the treadmill Monday by lasting 35 minutes at variable speeds without any rests and covered almost 1/2 mile. This was a 1/10th of a mile more than the last time he did 35 straight minutes.

To any of the APTA PASS Summit participants checking on this website, welcome. Thanks for allowing us the privilege of attending and participating. We look forward to your achievements in attaining your 2020 goals.

I just finished watching the Academy Awards and for some unknown reason was able to stay awake to the end, a first in many years. In keeping with the spirit of recognition of excellence I would like award my own “oscar” to the terrific support team of therapists who have done and, I suspect, will continue to do wonderful things with and for Nicholas over the past years: Pat, Cathy, Maria, Christine and Rob…. Thank you for your dedication.

Nicholas had an OK week. He had a very mild cold and, as with all of us, lost a little energy and looked forward to his afternoon naps. He did have his first good fall in a long time. I think the last one was about 3 years ago, resulting in 4 stitches in his lip. This one wasn’t nearly as bad but of immediate concern. He lost is balance in the driveway, went over backwards, tried to save himself but hit he back top of his head. Fortunately, he had a heavy wool hat on and basically came-up smiling. I was reminded by his PT to be a little more attentive when he has a cold and is walking with the walker or crutches, as his balance will be a little off. Lesson learned.

The high point of the week was last night. I took him to his 1st hockey game since the accident. It was a sold-out collegiate game. Lots of noise from competing bands & zealous fans. Nicholas loved it. Even with his sight impairment he was able to follow the game. He really got into it and was animated all evening and continued to be so today. I’m looking forward to doing more of the same. The effect of this type of stimulation is extremely positive.

OK. Didn’t forget this week. I’m keeping my fingers crossed that the improvement in Nicholas’ communication skills isn’t an aberration. Thanks to his speech therapist he’s become a more outspoken and his word retrieval is getting better. She even had him reading simple sentences the other day. This is something he hasn’t been able to do since the accident.

News Flash (for those who missed it):

February 2, 2009 - around 7:30 am ET - Punxsutawney, PA
Phil saw his shadow and thus we are headed for 6 more weeks of winter!

Apologies for not posting Sunday. I was away, just returned and, obviously, forgot. All’s well. Will be more diligent next Sunday.

The other day one of my sisters asked by email how Nicholas was doing. I got a little long-winded with my reply but I think it pretty much summed it up. So here it is:

It’s really just a lot of little things. What he says without being prompted. It doesn’t happen often but enough to realize some neuro connections are beginning to establish. On good days he’s beginning to remember some of the speech drills his therapist, Cathy, has him doing. It’s amazing
what she’s been able to do with/for him. Actually it’s a bit like 1st grade sentence construction. Kind of reteaching this discipline to reestablish the connections. Subject, verb, object. It’s not that he doesn’t know this, it’s a way to retrain the mind to make logical steps & retrieve knowledge. He’s also learned how to use his special laptop to help him remember things (what he wants for breakfast, etc.). Physically, he’s still battling his right hip, knee, ankle flexion. His PT, Pat, is working tirelessly on this & there’s some improvement. He actually walks better with just a cane than 2 crutches but because of the right leg thing his balance is not as good as with crutches. The other problem is his incredibly tight hamstrings. This is a result of the brain injury & he’ll have to deal with it for the rest of his life. He has to stretch every time he stands up & even while he’s sitting down. He doesn’t remember to do this & has to be constantly reminded, which means we have to remember to tell him & we’re not very good about this. As the neuro connections begin to improve, so will his right leg. Just have to be patient. I hope this eventually comes around, as
it will really open up a lot of things he can do outdoors. Pat just returned from a teaching tour in Thailand & Saudi Arabia. She had a session with him Tuesday after a 2 week absence & watching him walk with a cane & carry on a conversation at the same time her remark was “Nicholas, your
brain is beginning to wake-up". Can’t say enough about all the therapists’ dedication to Nicholas. I would think after 2-3 years they might get discouraged or just lose interest. However, they see progress & the results of their hard work, plus Nicholas’ wonderful work ethic & sense of humor.
They’re just as determined as I am to have him achieve a modest level of independence.

For those of you who have become accustomed to reading this on Monday morning, there will be a 24 hour delay.

This was a great “do nothing” week. Nicholas’ Monday work-out at the athletic club was canceled, his PT was traveling all week and his speech therapist retreated to Cape Cod for a well-deserved break. So, no stress. Just a therapeutic massage and music therapy. However, he had a great week of doing pretty much what he wanted to do for a change. R & R for everyone. Although, as promised to his PT, he did do stretches at least once a day. I’m pretty sure Nicholas fully enjoyed the break from the routine and its back to work tomorrow with a full schedule.

In my posting on October 12 I mentioned Nicholas’ use of a highly interactive loaner laptop (Lingraphica - http://www.aphasia.com/patients/index.aspx) to improve his communication skills. He now owns one and with a great deal of guidance from his speech therapist has become quite comfortable using it. As a result Nicholas has become more confident in his ability to communicate and is much more as ease now joining conversations and verbalizing thoughts.

Happy New Year to all in Nick’s World. And, Happy Birthday to his sister, Kristin.

Just saw 3 great movies with Nicholas over the last week. So, don’t miss DOUBT, MILK or SLUMDOG MILLIONAIRE.

Avoid any consumable product made in China containing melamine.

All’s well and we’re looking forward to a great year in 2009.

GOLFING AT CHRISTMAS LOOKING GOOD!!!! WAY TO GO “OLE GRAMS”

Great Christmas. Made it a “green” as possible and it felt good. Took advantage of some balmy 60 degree weather and had Nicholas hit a few practice balls on the range today. Great for his balance. See the Photo Gallery. And thanks to Carlin, Julia & Felix from dropping by and spending time with a friend. I haven’t seen Nick so animated in a long time.

A good friend sent me the 2008 Dalai Lahma Mantra. Given the season, it’s well worth repeating. Pay special heed to #15.

1. Take into account that great love and great achievements
involve great risk.
2. When you lose, don’t lose the lesson.

3. Follow the three R’s:
Respect for self
Respect for others and
Responsibility for all your actions.

4. Remember that not getting what you want is sometimes a
wonderful stroke of luck.

5. Learn the rules so you know how to break them properly.

6. Don’t let a little dispute injure a great
friendship.

7. When you realize you’ve made a mistake, take immediate
steps to correct it.

8. Spend some time alone every day.

9. Open your arms to change, but don’t let go of your values.

10. Remember that silence is sometimes the best answer.

11. Live a good, honorable life. Then when you get older and think
back, you’ll be able to enjoy it a second time.

12. A loving atmosphere in your home is the foundation for your
life.

13. In disagreements with loved ones, deal only with the current
situation. Don’t bring up the past.

14. Share your knowledge. It’s a way to achieve immortality.

15. Be gentle with the earth.

16. Once a year, go someplace you’ve never been before.

17. Remember that the best relationship is one in which your love
for each other exceeds your need for each other.

18. Judge your success by what you had to give up in order to get
it.

19. Approach love and cooking with reckless abandon.

I also know that dreams really do come true and you have my Best Wishes and my best efforts in those.

I have posted a couple of pre-Christmas pictures on the Photo Gallery.

It’s always a treat to come back after a week of being away and realizing the progress Nicholas continues to make. Perspective changes and I see little things that are really big that are often missed in the day-to-day events. I think we’re beginning to see some signs of short term memory returning, thanks to the work being done with all the therapists. Using more and more music as a means of initiating communications has had a very positive effect. After I’d been away for a little less than a week, while taking the elevator to speech therapy, Nicholas asked where I was. He’s never done this in the past. Also, one night Lucy retired early and Nicholas took it upon himself to walk into her bedroom to say “good night” before he went to bed. These are both examples of short term memory… remembering I was away and remembering to say “good night”. Given a chance he’s apt to come out with clever comments these days. I went out last night. Before departing I told Nicholas what I was doing and asked him if he was happy. His reply was “Yes, but I’ll be a little less so when you leave.” Good stuff.

Having not posted last Sunday, I almost forgot to do it and now it’s 15 minutes into Monday. So, here I am ready to turn in for the day, trying to think of something inspirational to write and it’s not coming easily. Last year about this time, Nicholas had just about fully recovered from outpatient surgery to reposition his shunt catheter and his progress from that point on has been tremendous, all things considered. The one thing I’ve really noticed lately is more initiative. It comes and goes, which is a huge step in the right direction. Just this evening when we returned from dinner with friends, I parked the car in the garage, and while I was retrieving his crutches from the trunk, Nicholas got out of the car and began to walk, steadying himself on the car toward the door into the house. This is the first time he’s done this and not waited for someone to stand by the car door with his crutches. This may seem like no big deal, but to have him take it upon himself to do something or anything with out be cued is indeed a big deal.

Again I must stress the importance of Nicholas interacting with friends. He gets enough family. If you are unable to come by for a visit, try emailing him at nicholasmrobbins@gmail.com. I will be sure to read all emails to him and he can dictate replies.

Nicholas was a guest of first year graduate PT students on Tuesday for a 2 hour class and, as usual, thoroughly enjoyed playing to an audience. He’s returning this week for encore.

One night after dinner I decided to turn-up the volume on one of the satellite stations and Nicholas began to sing along. By the end of the evening, he sang all the words to 3 songs by the Doors, 2 songs by Led Zeppelin, 3 songs by Guess Who and a few by Crosby, Stills & Nash. On top of this he never missed the rhythm, syncopation or note. I was blown away. Apparently, according to his speech therapist, music can definitely be a link to suppressed knowledge and she will be incorporating this into his sessions and I’m looking forward to more evenings of singing. Take a look at the Photo Gallery and Nicholas using an inverted pepper grinder for a mike. Good stuff.

Nothing really to report. All’s well, although Nicholas may be coming down with the first cold of the season. We’ll know more in a few days. We haven’t seen very many of his friends lately, and it’s extremely important he gets to intereact with more people than just his immediate family and therapists.

On another note we are attempting to convert the Robbins Fund into an endowment but need more capital to have this happen. Every donation large or small helps. Contribution details can be found by clicking on “Learn More” under Robbins Fund on the home page of this website. Thanks.

I trust everyone in Nick’s World enjoyed All Hallows Eve appropriately. We certainly did. There’s not much to report on last week’s activities, except for another successful cotreat with Nicholas new found TBI recovery friend. The interaction was better than last week and should continue to improve with each shared session.

It was a different and encouraging week for Nicholas, as he was able to break from his normal schedule. On Tuesday he made a guest appearance at the MGH Institute of Health Professions and was the subject for a group of 2nd year PT students, evaluating transfer abilities, gait and balance. Look closely at the 2nd picture in the Photo Gallery and you’ll note Nicholas standing with both crutches raised. The teacher is not touching him. She’s only in a position to catch or correct him if he loses his balance. He was timed do this with his eyes both open and closed and far exceeded expectations. As usual he loved performing for his audience.

On Thursday Nicholas joined a new friend, also recovering from a brain injury, and their common PT for a joint session in a pool. It went extremely well with both enjoying the interaction. It was obvious to me that they were an inspiration to each other and this should develop into a good and mutually beneficial relationship. These joint sessions will now be a weekly occurrence. Check-out the recent pictures in the Photo Gallery

Nicholas logged in another good week. He seems to enjoy using the Lingraphica laptop, finds it stimulating, and it has certainly added to his communication skills. We have made arrangments for him to meet this week another brain injury recovery person, who lives about 15 minutes down the road in Gloucester. This person is close to Nicholas’ age and plays the piano. Nicholas PT and Speech Therapist feel the interation will have a positive influence on both.

Looking to the future, Nicholas now has a new email address (nicholasmrobbins@gmail.com). Although he has not regained his reading comprehension, if anyone cares to send him a message, I will be sure it’s read to him.

One of the reasons we love to live in New England is to experience a week of beautiful autumn weather, as we did this week. Cool nights for sleeping and warm, clear days for invigorating outdoor activities. And no one enjoyed it more than Nicholas, as evidenced by the expressions on his face (check-out the Photo Gallery) during an afternoon spent on the boat cruising around the bay. The smile’s been there ever since we returned from our trip.

Nicholas is testing driving a Lingraphica, introduced by his speech therapist. It’s a fascinating, interactive laptop designed to improve communication and thought processing skills. Take a few minutes and check-out http://www.aphasia.com/patients/product.aspx and click on “video demonstration” (left side menu). This device seems to have captured his attention and I expect using it will have some very positive results.

very impressed with your latest report nic keep up the spirit noticable you have been working hard what a nice way to welcome your parents home ..much love and big hugs “ole grams”

It’s good to be back home after 3 1/2 weeks to find Nicholas in great shape. I think he thrived on the separation and getting out from under the watchful eyes of doting (if you will) parents. It’s obvious he was able to establish in his mind a certain degree of independence. We will certainly be more aware of this in the future. Physically there was a noticeable improvement in his balance and ability to get around on crutches. He very rarely uses a walker now. Mentally, he readily participates in conversations, offers opinions, asks questions and generally displays more initiative. It was also great to realize his wonderful sense of humor has returned.

I will be out of the country for the next 4 Sundays. Therfore, there will be no Parent Posting until October 5th. If anyone in Nick’s World drops by the house during this time (all are welcome) and have any comments, this webiste is avialable. As a matter of fact, I’ll be watching it during my travels. Nicholas will be in the excellent hands of 2 caregivers, plus spending 1/2 of each week with his mother. This will be a good switch in the normal, weekly routine and I’m sure he will enjoy change.

Nicholas loves being at the Cape and has expressed this feeling, especially just the easy going daily routine. Next year we hope to spent a great deal more time there. I have posted a few pictures on the photo gallery. The weather was terrific. Tides were just out of phase otherwise we might have gotten to do some real swimming.

A great week at Cape Cod is drawing to an end. As I’m working with dial-up access, I’m begging off a complete posting with photos until tomorrow evening.

We’re at our house on Cape Cod enjoying a complete change. Nothing scheduled for at least a week. Just soaking up the sun on the beach, getting out in the boat and enjoying conversations. Occasionally Nicholas does a little PT along with more walking than usual. He’s very much at home here and at ease, which in itself is good therapy for him.

Nicholas’ week was all about a wedding. His siter Kristin was married on Saturday in a beautiful ceremony and Nicholas was her ringbearer. Take a look at the Photo Gallery and the album entitle Ringbearer for Kristin and Mike.

One of the primary reasons Nicholas is doing as well as he is can be attributed to a great support team of therapists and trainers. One of these is Rob Gagnon of the Manchester Athletic Club. Rob has created his own website/blog. On August 4th one of his entries is entitled “Why I do what I do". It’s about his relationship with Nicholas and can be found at:

http://web.me.com/robgags/Robs_Blogsite/Robs_Blogsite/Entries/2008/8/4_
Why_I_do_what_I_do……html

I encourage all of you to read it, especially the part about 34 minutes on the treadmill.

I returned after a 10 day trip to find Nicholas tanned and in great spirits. He obviously must have spent some quality time by a pool on or the beach. Although his short term memory is still lacking, he’s become a pretty good conversationalist and it was fun to catch up with him. We, Nicholas included, are looking forward to the marriage of his sister, Kristin, in 2 weeks, followed by a break in the routine with some r & r time on Cape Cod.

It was a slow, uneventful week spent mostly avoiding the heat and humidity. Brutal! By the end of the week it had obviously sapped some of Nicholas’ energy. I will say he’s thinking very clearly these days. Saturday was the worst of the heat and humidity. Given the choice of spending time at and in a private pool or a few hours at an air conditioned movie theater, he chose the latter.

I will be away for about a week starting Wednesday. Therefore, there will be no Parent Posting on Sunday, July 27th.

Another first since the accident was accomplished today. Nicholas went sailing on a 48 foot yawl for 3 hours. The transfer from dock to boat was a little awkward. But give him a challenge and he’ll meet it. Once he settled in and we were underway with full sails, he was smiling like a Cheshire cat. We had a good breeze with somewhat of a sloppy sea running. Nicholas was very comfortable with the motion, just like old times. No problem. It has taken us quite some time to actually feel he had progressed sufficiently to sail not to mention the task of getting on and off a boat larger our 21 foot outboard. Now that he’s finally done it, we’re looking forward to more of the same. Go Nick!

Great July 4th weekend! Many of Nicholas’ old friends where “home” to celebrate. The party started here on Friday and ended Sunday evening at the Rhumb Line in Gloucester, listing to Shane Bediz & friends play some wonderful music. Thanks to everyone for spending time with Nicholas. I know you know how important this is to him. He hasn’t stopped smiling all weekend. More pictures posted on the Photo Gallery.

Nicholas had a good week, followed by a better and very social weekend with friends. Check-out the Photo Gallery for the latest. It started with Will taking him to the movies on Thursday. Then it was a trip to Cohasset and lunch with the Stavis Family on Saturday. And, wrapping-up with TJ’s wedding Sunday evening in Boston. There’s nothing I can think of that is any better for him at this stage in his recovery than to spend quality time with his three best friends. They go back a long way. Thanks guys and TJ congratulations again and all the best to you and Kerri.

As Nicholas becomes more aware, his observations become more poignant. Just the other day he made the remark that he doesn’t have any friends to “play with” any more. So, friends, after 3 years it’s time to step up. He needs you. I know it’s difficult and often awkward. He’s not the same guy, but he needs you for re-enforcement and to know your still there.

One picture has been added to the Photo Gallery. It’s an indication of how good his core strength has become. He assumed this posture from a kneeling position with his hands on the mat, something he could not have come near doing a year ago.

Nicholas is having a ball with the students at the Institute of Health Professions on Mondays. He loves performing for his audience. Take a look at the Photo Gallery. Go Celtics!

A few weeks ago I mentioned the little incidences which seemd to indicate an added awareness in Nicholas and an increased initiative. The other morning he & I were doing the Globe crossword. It’s a good exercise, and we do cheat a little just to speed it along. I had my head down, writing in a word, when Nicholas said, “Someone just came home.” I had no idea what he was talking about but a minute later a friend walked in the front door. He had seen a car pull into the driveway. We are seeing more and more of this type of initiation. Go Nick!

And the Celtics are up by 12 at half time. Go Celtics!

Ever wonder why you should say “Rabbit rabbit” on the 1st of every month"? Just found this bit of very important information:

“What’s the deal with rabbit rabbit? You’ll have good luck all month if the first words you utter on the first of the month are ‘rabbit rabbit’. Bonus luck if it’s your birth month. If it’s the first of the month and you’re reading this, don’t fret. Simply reverse the process as you drift off into slumber land repeating “tibbar tibbar". That’s rabbit rabbit backwards.”

I asked Nicholas what he would like to have posted to his website or if he had a message to all those out there in Nick’s World. He said, “Tell them everything is fine.”

Nicholashad a second Botox intervention on Monday. His first was in January. It takes 24 to 72 hours to see any effect. After 6 days I haven’t ntoiced anything dramatic but I’ll leave the real evaluation to his physical therapist.

As mentioned in other postings, there are times when Nicholas does something so surprisingly ordinary and seemingly spontaneaous that really encourages us. Today, as we were getting ready to take a trip in the car and he was walking by the stairs, he turned and headed up to his bedroom. He was reminded he was supposed to go to the car and responded he had to get something for his cell phone. OK. We played along and went with him to the bedroom, where he started searching for something. When asked what he was looking for he said that he needed the tunes for his cell phone. Translated he was looking for his Ipod Shuffle to take with him. This turned out to be huge; first because he remembered he had a Shuffle and second knowing he wanted to listen to it while in the car. We have rarely witnessed any recall of this kind in the past.

Nothing extraordinary to report. I’ve started reading WATER FOR ELEPHANTS to Nicholas, which he enjoys and is able to follow with little difficulty. He starts a new PT routine tomorrow and will be participating in a gait & balance class, taught by his physical therapist, each Monday for 5 weeks a the MGH Institute of Health Professions. He did this in 2006 & 7 and made significant improvements. His involvement not only gives the students a great opportunity to gain “hands-on” experiences, he is also receives valuable therapy. He is also scheduled for his 2nd Botox intervention this week to improve his right leg and ankle flexion.

HAPPY MOTHER’S DAY!

Nicholas has his “official” 37th Birthday Party today which was attended by friends & relatives, young, not so and in between. As tends to be the case, pictures speak louder than words. So, take a look at the latest addition to the Photo Gallery.

Equally as important, it’s also Mother’s Day. I doubt most of us are aware of how this tradition originated. Here’s the history:

The United States celebrates Mother’s Day on the second Sunday in May. In the United States, Mother’s Day was loosely inspired by the British day and was imported by social activist Julia Ward Howe after the American Civil War. However, it was intended as a call to unite women against war. In 1870, she wrote the Mother’s Day Proclamation as a call for peace and disarmament. Howe failed in her attempt to get formal recognition of a Mother’s Day for Peace.

Her idea was influenced by Ann Jarvis, a young Appalachian homemaker who, starting in 1858, had attempted to improve sanitation through what she called Mothers’ Work Days. She organized women throughout the Civil War to work for better sanitary conditions for both sides, and in 1868 she began work to reconcile Union and Confederate neighbors.

When Jarvis died in 1905, her daughter, named Anna Jarvis, started the crusade to found a memorial day for women. In 1907, she passed out 500 white carnations at her mother’s church, St. Andrew’s Methodist Episcopal Church in Grafton, West Virginia—one for each mother in the congregation. The first Mother’s Day service was celebrated on 10 May 1908, in the same church, where the elder Ann Jarvis had taught Sunday School. Anna chose Sunday to be Mother’s Day because she intended the day to be commemorated and treated as a Holy Day. Later commercial and other exploitations of the use of Mothers Day infuriated Anna and she made her criticisms explicitly known throughout her time.

Originally the Andrew’s Methodist Episcopal Church, the site of the original Mother’s Day commemoration, where Anna handed out carnations, this building is now the International Mother’s Day Shrine (a National Historic Landmark). From there, the custom caught on—spreading eventually to 46 states. The holiday was declared officially by some states beginning in 1912, beginning with West Virginia. In 1914 President Woodrow Wilson declared the first national Mother’s Day, as a day for American citizens to show the flag in honor of those mothers whose sons had died in war.

Nine years after the first official Mother’s Day, commercialization of the U.S. holiday became so rampant that Anna Jarvis herself became a major opponent of what the holiday had become. Mother’s Day continues to this day to be one of the most commercially successful U.S. occasions. According to the National Restaurant Association, Mother’s Day is now the most popular day of the year to dine out at a restaurant in the United States.

For example, according to IBISWorld, a publisher of business research, Americans will spend approximately $2.6 billion on flowers, $1.53 billion on pampering gifts — like spa treatments — and another $68 million on greeting cards.

Mother’s Day will generate about 7.8% of the US jewelry industry’s annual revenue in 2008. Americans are expected to spend close to $3.51 billion in 2008 on dining out for Mother’s Day, with brunch and dinner being the most popular dining out options.

Good Morning Marcia.

My informants at ECC tell me you check-out this website every morning. Hope you are doing as well in your recovery as I am and look forward to seeing you around one of these days.

Nicholas

great reports they keep getting better and better the colorful birthday cake made the 37th extra special…grams

Occasionally the years of dedication to seeing Nicholas reach his recovery potential do pay off. The other day I took a ride to Rockport with him to take a look at the Rockport Lodge, just renovated by a friend. We had the radio on playing a tune I recognized but didn’t know the name or artist. I said to Nicholas it sounded familiar. Without hesitating he replied, “Purple Haze, Jimi Hendrix.", which it was. I asked him if he was guessing, he said no & laughed. Made my day! It’s moments like this that make the entire effort worth while and bring it all into its proper perspective.

37th birthday on May 1st and celebrated by a surprise cake at the Manchester Athletic Club. Check-out the Photo Gallery.

All good news to report for this week. Nicholas appears to have completely recovered from the seizure and has picked-up where he left off. Progress continues. Where and when this ends, if it does, no one knows. We’re just happy to be riding the wave. It seems that mile stones, big and small, occur almost daily. We decided to give the recumbent bike (tricycle) a go today. It’s been about 6 months since last used. Previously the articulation of his right ankle was so limited he could not keep his foot on the peddle without securing it with tape. Nor could he comprehend the use of the hand and peddle brakes. No problem now! It’s like he’s ridden it all his life and in complete control. In the past riding was a chore. Today it was fun. See for yourselves in the Photo Gallery.

Nicholas continued his encouraging progress all week. His balance during PT was the best ever. Although he never to my knowledge ever laid hands on a harp, he was handed one in speech therapy and began to play like a natural. His therapist considers this a great instrument, as playing it entails several therapeutic exercises. He made beautiful music. Check-out the Photo Gallery.

Unfortunately, he had a seizure Friday night. Although these are rare, it seems they may be unavoidable. They always physically exhaust him, and it takes up to week for him to fully recover. Fortunately, he appears to have bounced back from this one almost completely in just 2 days.

During our absence last week, it was reported Nicholas kept everyone thoroughly entertained.

The more conversive he becomes the more his aphasia is apparent. However, this doesn’t seem to be a cause of embarrassment nor deter him from continually trying to express his thoughts. Even when he struggles with words, there is no doubt his wonderful sense of humor has returned, as evident in the following, written in an email:

“We kid around and call Nicholas the Big Cheese but on Sundays I tell him God is the Big Cheese. I asked him who the Big, Big Cheese is, and he said Red. I said - close - did you mean God - yes I did. Well, what do you want me to tell God today when I go to Church - answer - Tell him his name is not RED.”

You can’t make this up!

Nicholas was a great assistant the other day assembling an Adirondack Chair. I took a couple of pictures of the “handyman” with the finished product and have uploaded them to the Photo Gallery.

It’s been quite a while since I’ve contributed to this website but today I’m too excited to let it go. Thanks to a call from N this morning to wake me up, I had THE BEST conversation with him I’ve had in 3+ years. Complete sentences, independent thoughts, apporiate questions, good timing/rhythm. It has put a smile on my face all day and I keep repeating the sentences he utter over and over again. Keep it up bro!

I indicated I wouldn’t be doing a posting ontil a week from Sunday. However, I’ve uploaded a few pictures taken at PT today. Check-out the Photo Gallery.

Hello Nick and Robbins Family,

we are soooo happy to hear about your progress, you are totally rocking it! Reading Rob’s post made us both cry with excitement.
We can’t wait to see you again soon in less than a month when we’ll be back on the Northshore.

Love and healing Light
Julia and JennyQ

The good times continue, as evidenced by Rob’s posting last Thursday. It’s been a very long time since I’ve felt a true spirit of enthusiasm around the house. I have been reporting Nicholas’ progress to his neurologist and, as mentioned in past postings, attributing this to the change in his anti-seizure medication. The intriguing response from the doctor this week was, “I’m pleased - and humbled by how little I know about how complex injuries of this type evolve.” and this is from one of the more repected professionals in this area.

I will be away for a week starting on Wednesday and most likely not have the ability to do a Parent Posting next Sunday. The next posting will be on Sunday, April 13th.

Hi Everyone,

Rob here, Nick’s “personal trainer/athletic trainer". Over the past 2-weeks it has been a very emotional time for me working with Nick and seeing some big improvements. Every monday we get Nick in the pool to perform some basic activities that are generally harder for him to do on land. The bouyancy aiding in Nick being able to walk more by himself without support and the water adding the needed resistance with the exercises. One thing we have done in particular is having Nick finally be able to walk the entire length of the pool without losing is balance or me holding on to him. Nick is now able to not walk, but actually “jog” or fast walk one length of the pool in 45 seconds!

Last week we had another big day as well. On Thursdays I give Nick the option, either we walk on the treadmill, weight train or stretch. I always choose one activity based on which one he chooses. Well, last Thursday Nick chose to stretch, so I said we would first work on some strength/proprioception exercises first. We did some mini-squats WITHOUT assistance and some active hip flexion exercises when I decided - lets go for it. I took the walker away (Jackie was standing behind him in the ready position!), stepped 10 feet away and told Nick to walk to me. With some verbal ques (feet apart, lift your legs, take your time keep your head up and my famous, “don’t fall because I ain’t catching your ass! - I love getting him laughing!) Nick walked alone, unassisted 8 steps! Lucy was there watching and said, “these are the first steps he has taken like this without support” and I almost lost it! I teared up and almost had to walk away it got so emotional for me.

This past monday in the pool I had Nick on his stomach with a floatation, trying to swim keeping his head above water. We were both laughing for the entire hour! We finally managed (with a few head dunks under water) and Nick was off with the “Nick Robbins Doggie Paddle” to the other end of the pool. We had a lot of fun.

Today I am home sick (I have had the WORST winter with getting sick!) so I won’t see Nick today. But, it continues to be fun to work with Nick and see these amazing changes. GREAT JOB NICK!!!!!

Other than going to the house on Cape Cod Nicholas had his first real excursion this weekend in 3 years. We spent the weekend at a friend’s house in Vermont and all went very well. It was remarkable to me to realize just how easy it was to travel with him. Even the icy pathways presented very little problem. I think he really enjoyed the break. Weekends tend to be a little difficult when confined to Manchester. Any change in his routine is always stimulating.

It was another good week for Nicholas, as he continues to make progress. His PT feels he has finally returned to a pre-shunt operation condition after 9 months. This is most likely due to the change of meds. Take a look at the Photo Gallery for a balance exercise involving golf. For those of you who play the game, you’ll note some work needs to be done with his grip at address and head position at take away. He also now walks better using crutches than a walker. This is big!

We are always willing to give whatever we can back to the healthcare community and especially to those who have had such a positive influence in Nicholas’ recovery. Earlier this week Nicholas was one of two subjects for 2 hours in a class of PT’s studying “Concepts of Assessment in Neurologic Physical Therapy” at the MHG Institute of Health Professions. There’s no doubt he loves to perform in front of an audience and the interaction between him and the students was wonderful to observe.

The Photo Gallery has been fixed and the pictures taken about 3 weeks ago have been uploaded. Take a look at the new album titled “February Snow” and in particular the photo captioned “Genuine Fun". It’s a look and emotion we haven’t seen from Nicholas in a long, long time.

Nicholas’ emergence from a laconic state continues. I don’t for a minute believe this is merely coincidental with the change in his anti-seizure meds but rather a direct result of this change. What we are witnessing is best exemplified by an email received from his music therapist right after her session with him last Thursday:

“I had a wonderful session today!!!!! Nicholas sang “Hello Christine” without ANY prompt and with no hesitation in response to my singing hello to him. I had tears in my eyes! He has never done this before. Then he went on to play the drum, creating short rhythm riffs that were each very unique - he did not get stuck on any particular rhythmic pattern as happens frequently. He also did not hesitate to initiate a new rhythm after each of my responses. Then I asked him to start a basic beat which could be slow or fast. He said “I’ll pick a medium beat.” and went on to play, at first very slowly but then picking up speed. Throughout the session he initiated rhythms, played a variety of instruments we hadn’t played together, sang loudly, laughed allot (as did I!) He answered questions and asked me questions, i.e. “Do you like to sing?” “Yes, I like to sing.” without hesitation. Finally he sang With a Little Help from my Friends” singing all of the words (which I couldn’t remember) and singing loudly, responding to my inflections in a very interactive fashion. In short I found him to be more spontaneous and engaging than I have yet. I was thrilled.”

I had planned to upload some good photos taken 10 days ago but the Photo Gallery still has problems. Hopefully, it will be resolved by next Sunday. In the meantime we are experiencing some very positive cognitive progress and can only assume it’s a result of the change in anti-seizure medication. The cross-over from one to the other was completed today and the new medication seems to be less repressive. Nicholas’ delightful sense of humor is creeping back.

It was truly a beautiful winter day. Virgin snow, blue cloudless sky and warm sun. Decided it was perfect to have Nicholas try snowshoeing. He was great. It was not easy, as it did require he lift his legs and feet much higher than in a normal walk. He really worked at it, wouldn’t quit, and thoroughly enjoyed being outdoors, soaking up the sun and doing something different. I had intended to upload some pictures to the Photo Gallery to show just how much fun he had. His expressions tell it all. However, there seems to be a glitch on the website, so you’ll have to wait until next week, assuming it will get fixed.

Nicholas was the subject of a physical therapy class on Monday studying neurological muscle disorders and to a minor degree the effects of the Botox intervention. The class lasted almost 3 hours with students diagnosing muscle disorders and practicing therapy techniques. He was impressive, giving simple answers to questions posed by the instructor and patient with the students. I do believe he enjoys being center stage and playing to an audience. He will be returning for another engagement in March.

On a slightly discouraging note the lab work from his annual physical detected a lower than normal concentration of sodium was in his blood, Hyponatremia. This is a prevalent side effect of his anti-seizure medication. Therefore, starting this week he will be transitioning to a new medication. The cross over takes 3 weeks during which time and until he’s able to adapt we can expect him to be less responsive and appear to be more fatigued. Anti-seizure medication is tough stuff on the body and mind. It would be great if he did not have to take it. Unfortunately, the risk of having multiple grand mal and potentially damaging seizures is not worth the risk at this time.

We’re getting over the Pats’ loss & moving on.

Nicholas had his first Botox intervention on January 30th in hopes of reducing spasticity in his right ankle and leg. After 10 days there have been some subtle changes in Nicholas’ hip flexion and knee and ankle articulation (dorsiflexion). A great deal of his PT is now devoted to strengthening the right anterior tibialis & hip flexors. I feel that over time and with proper therapy Nicholas walking ability (gait) & balance will improve.

Not much to report. Just another unremarkable week… a good thing. It’s been 8 months since the VP Shunt procedure and I feel Nicholas is pretty much back to the level he was prior to the surgery. Now it’s time to progress. He will be given a Botox injection in his right leg later this week with the hope of increasing flexion and reducing spasticity.

As I will be away next Sunday, there will be no posting. The next one will be on February 10th at which time I hope to have a positive report on the Botox treatment.

GO PATS!

Peter, Lucy, Nicholas, et al:

It’s been a few years since we’ve had time to chat however I have followed Nicholas’ progress for some time since hearing the news about his accident. I’m happy to see him improving and seeing your family doing so well. Life does throw us some curve balls…for sure.
All the best to you all,

Bonnie
PS GO PATS! )

Nicholas had a rather relaxed week. He took a break from speech therapy (his therapist was on holiday) and had one of his work-out sessions cancelled. He seemed to thrive on the down time and enjoyed the change of pace.

After 2 years we just received an email from the resident at the New Zealand hospital who was one of the instrumental doctors responsible for Nicholas’ initial recovery. There is no doubt of the great attitude & caring still exists even from so far away.

Congratulations to Nicholas’ sister, Kristin, who just announced her engagement to Mike.

And….GO PATS!

It was 3 years ago last Monday when I answered our phone in Queenstown, New Zealand, and listened to words a parent never wants to hear. It will be 3 years ago on Wednesday the following was posted on this site:

Nicholas is in a deep coma (for those with a medical background his glascow score is 5 and was 3 at presentation). A repeat cat scan on the 13th showed that his brain is still very swollen from the initial trauma. The neurosurgeon thinks it will be another 10 days before the swelling goes down. He has had his forehead bone removed to allow for relief of the pressure from the swelling and once the swelling goes down they will replace it. In addition to the diffuse swelling there is an area where he actually hit his head (in the right frontal lobe) where the brain tissue has died. What this means in terms of Nick’s functioning is again really difficult to say. Some people have relatively little functional change from large areas of damage while others have large deficits from seemingly small injuries. Nick’s recovery could be anywhere along the spectrum and there is the small chance that he might not wake up. Also the waking process itself is slow and gradual, rather than something that will suddenly happen in one day.

Not much is known about deep comas or about what Nick is capable of hearing or understanding. He probably will not remember any of this and is probably unaware of what is happening to him at this point. He does respond to stimulation, however- voices, music, or a painful stimulus all make his heart rate and blood pressure go up and make his eyes open a bit more. He has a sleep- wake cycle with his eyes closed or open, respectively, but “awake” is not awake in the sense that we are used to.

In terms of movement he moves his right arm quite a bit spontaneuosly, coughs, occasionally blinks, roves his eyes around, wiggles his mouths, yawns and if you pinch his left arm or toes he will withdraw them slightly.

For breathing he has a tube in and though he breathes on his own he receives minimal support from a respirator. The goal is to slowly wean him off of the respirator and switch from the tube to a tracheotomy (hopefully within the next week). Though he is breathing on his own he will need to have either the breathing tube or a tracheotomy to protect his airway until he is much more awake.

Because he isn’t moving around and he has invasive lines going into his body he is at risk for a number of infections. He is recovering well from a bout of pneumonia, but as of this morning he has a new blood infection (coag neg staph) . Today they will change his arterial line in case that is the source of the infection and will start new antibiotics (Vanco, gent and flucoxacillin (?)). (Currently only has a subclavian central line, and a foley in. He had two chest tubes and a ventricular catheter which were all removed 5 days ago. Sinuses looked fine on CT 1/13).

Other injuries include fractures of the cervical spine, the thoracic spine (T2), and a few fractures of his cheekbones. There is no spinal cord damage which is apparent at this point and the cervical and thoracic spine fractures will heal on their own in 6 weeks or so. Until then he needs to wear a neck brace and be turned carefully in bed so as not to tweak his thoracic fracture. The facial fractures will need to be repaired at some point and since they will require 5 hours of surgery this step will happen much later.

Nicholas has come a long way in 3 years. Sometimes we lose sight of where this began and feel as though not a great deal of progress is currently taking place. Reading past postings is something we need to do from time to time to put the entire situation in its proper perspective.

We welcomed the New Year rather quietly, emphasizing the power positive thinking as a major component of Nicholas’ continued recovery progress and thanking everyone in Nick’s World for their sustained support.

There was a delay in downloading a few Christmas photos, plus visual evidence of the effects of a new massage technique. Take a look at the most recent posting to the Photo Gallery.

New Year’s is a harmless annual institution, of no particular use to anybody save as a scapegoat for promiscuous drunks, and friendly calls and humbug resolutions. Mark Twain

Never the less and in all due respect to Mr. Samuel Clemens , we sincerely implore all to reflect on the positive of 2007 and carry this through to 2008 and beyond. We are indeed grateful for much and will be anticipating the same for 2008. We sincerely wish everyone in Nick’s World has a Happy, Prosperous & most importantly a Healthy New Year.

The Twelve Days of Christmas was remembered almost in its entirety at music therapy. Take a look at the Photo Gallery.

Nicholas & the entire family wish everyone in Nick’s World a MERRY CHRISTMAS full of love, compassion, understanding and peace.

Nicholas finally seems to be adjusting to the reduced Ritalin dosage. Although his cognitive responses are a little slow, his answers are more correct and articulate. He is also asking questions from time to time, something we haven’t witnessed for the past few weeks. He has a very important evaluation with a gait & spasticity specialist on Thursday to see if anything can be done to get his right leg more functional. “Spasticity is a disorder of the body’s motor system and especially the Central Nervous System’s (CNS), in which certain muscles are continuously contracted. This contraction causes stiffness or tightness of the muscles and may interfere with gait, movement, and speech.” Physical therapists have been working with Nicholas in strengthening & stretching his right leg for over 2 years with minimal success. Hopefully, the evaluation will lead to a solution.

About a week ago one of the few remaining medications Nicholas has been taking, Ritalin, was reduced by 60%. As he’s been taking this for over 2 years, it was time to ascertain the effects, if any, of the decrease. The initial result was he began to show some real frustration with himself, became a bit lethargic and spent last week as rather an angry man. In order to provide some relief, his personal trainer decided he needed a good cathartic, which is now displayed in the Photo Gallery, and it worked. We are always very much in favor of reducing medications, and, hopefully, Nicholas will make the adjustment in another week. The next step is to discontinue it entirely. However, as with all matters dealing with recovery of this type of injury, it’s a very slow process.

I will be away for a week starting Saturday, so this is an early posting. Nicholas had a routine appointment with his neurologist today. He was very pleased with the overall recovery and progress since the surgery on October 26th.

As there haven’t been any additions to the Photo Gallery for quite some time, I thought for those of you out there you might want to see how good Nicholas is looking these days. Take a look.

Busy Thanksgiving for Nicholas. Lots of family, stimulation, support & love and I’d say he’s finally back, cognitavely, from the operation. Much of this can be attributed to the great work being done with his speech therapist. He continues to tire fairly easily & needs to build up his endurance. Physically, he’s still having problems with increased tone in his legs. This still remains a mystery & we are working to getting it resolved.

And, for all the Pats fans…Phew!

As we approach Thanksgiving Day;

BE THANKFUL.

Be thankful that you don’t already have everything you desire.
If you did, what would there be to look forward to?
Be thankful when you don’t know something,
for it gives you the opportunity to learn.

Be thankful for the difficult times.
During those times you grow.
Be thankful for your limitations,
because they give you opportunities for improvement.
Be thankful for each new challenge,
because it will build your strength and character.

Be thankful for your mistakes.
They will teach you valuable lessons.
Be thankful when you’re tired and weary,
because it means you’ve made a difference.

It’s easy to be thankful for the good things.
A life of rich fulfillment comes to those who
are also thankful for the setbacks.
Gratitude can turn a negative into a positive.
Find a way to be thankful for your troubles,
and they can become your blessings.

Author Unknown

I will be away for the next couple of days and not be avail;able for the usual Sunday evening posting. Nicholas is still in the recovery mode. Soreness and pain have gone but he continues to tire easily. He’s also in a bit of a funk. I suspect some is related to residual anesthesia and some to the time of year (back to EST). He would very definitely benefit by having some friends drop by for a quick visit.

The soreness in Nicholas’ abdomen finally seems to have subsided over the weekend. He’s feeling better but still tired and not his usual self. I suspect, having endured weeks of pain, surgery and finally the residual affects of the anesthesia haven taken their toll. We’re looking forward to a better week ahead for everyone.

Continuing the saga, Nicholas was examined by the neuro & abdominal surgeons, who performed the shunt procedure in May, on Thursday and underwent laparoscopic diagnostic exploratory surgery on Friday afternoon, which revealed the shunt catheter out of position. Instead of being “free flowing” the catheter had become attached to the colon by lesions. It is assumed this was the source of the pain/soreness. The shunt catheter was repositioned. Hopefully the problem has been solved. Nicholas will be quite sore from the procedure for the next couple of days, and it will probably take him at least a week to rid his system of any residual anesthesia. We expect he’ll bounce back in a few weeks and return to making positive progress.

Nicholas has had rough couple of weeks dealing with intestinal problems resulting in 3 visits to hospital ER’s & the involvement of the entire medical team (PCP, Neurologist & Neurosurgeon). There is a chance these problems could be related to the drainage area in the abdomen of the shunt catheter. There will be more examinations by doctors this week and, hopefully, the issue will be resolved. Needless to say the therapies have been put on hold but we hope he’ll get back to his normal routine this week. In the meantime it’s top of the 6th & 3 to 2. Go Sox!

It has almost been 1-year since I started working with Nick here at Manchester Athletic Club. We have had our good days and bad days, but it is truly encouraging to see how he has progressed over the past year. Walking on the treadmill, exercising in the pool, walking in the pool with no assistance (I am within reach however) and no floatation device, the strength training - and best of all….everytime now when I ask Nick, “Who am I"?, he responds after a few seconds of thinking, “Rob".

I am enjoying working with Nick and I look forward to watching him continue to progress.

I have a brief account to report. Last evening we, including Nicholas, were having dinner at our house with dear friends. They had not seen Nicholas in two years and were truly amazed at how far he had progressed. It takes moments such as these to put our situation in the right perspective. As we’re with Nicholas almost every day, it’s difficult to realize, unless reminded, just how remarkable his recovery has been to date. Go Nick! Go Sox!

Nichoals had 4 seizures in the last 8 weeks and as a result his anti-seizure medication has been sightluy increased. Unfortunately, this causes him to get tired quite quickly. He will adapt to the increased medicationns ovet he next few weeks. In the mean time he is extremely attentive in his speech therapy sessions, which will lead to very postive results.

Nicholas did indeed bounce back from his seizure and cognitively had a very productive week. He is obviously stimulated by his new speech therapy, as he’s very responsive and exhausted after an hour session. He now had speech homework assignments and it seems to be effective. Perhaps we hit some good timing of re-instituting this therapy, after almost a year since it was discontinued.

Apologies for being late & brief. We missed our connecting flight in Denver yesterday afternoon, due to “mechanical” problems with the feeder from Sheridan, and didn’t get home until 1:30am. I haven’t had a chance to get an update on Nicholas’ week. I know he had a seizure but seems to have bounced back. I’ll have a full posting for everyone next Sunday.

Go Red Sox! Go Pats! Go Nick!

I was away over the Labor Day weekend in beautiful Cape Breton, Nova Scotia. Clean air and wonderful country. The land reminded me of unspoiled parts of Alaska with smaller trees. I returned to find Nicholas even more alert. It seems over the past 2 weeks, since my last posting, he’s become increasing aware and observant, and with this much more expressive, using relatively complex sentences. Also, “Nick’s vocabulary” is beginning to reemerge. Physically his daily practice with crutches is starting to pay-off to the point he now chooses to use them over the walker on occasions. Let’s hope this continues.

In observance of the Labor Day Weekend there will be no Parent Posting on Sunday, September 2nd. All’s well.

Nicholas had a great 10 days at the house on Cape Cod. Although we’re back, the break continues with a great deal of time practicing getting around with crutches. Take a look at the recent pictures posted in the Photo Gallery of life at Briar Hill (Cape Cod).

From Cape Cod:

Life is good for Nicholas at Briar Hill. He definitely and for good reason feels more at home and relaxed here. He’s been keeping up with his exercises, spending time at the beach, and been out in the boat. Still looking forward to swimming and maybe fishing, if the current cool weather changes.

We’re off on “summer break", as Nicholas PT clinic is done until after Labor Day. It’s time for a change in the routine and a little R & R. So, we’ll be spending the next 10 days on Cape Cod. Nicholas’ is looking forward to the change of scenery.

I’ve been away all week and have nothing to report except Nicholas seems to have had a good week. I returned today to find him looking great, very alert and happy.

Last week I reported on how encouraged Nicholas’ neurologist is at seeing the small improvements since his surgery. This made us become more aware of subtle changes. The two most notable this week were overall awareness of his surroundings, especially when he’s walking. He is very cognizant of obstacles that might impede progress. This translates into Nicholas being more safe to himself. Consequently, when he’s now getting around with the walker, he does it independently. There is always someone next to him but no longer holding or having to support him. The other thing we’ve noticed is his use of more sophisticated sentences and vocabulary. Go Nick!

Nicholas had a 2 month post-op evaluation this week by his neurologist, who was very encouraged. He reminded us that we are not always aware of the progress Nicholas is making, as we’re with him everyday. Any changes we see are seemingly subtle and, perhaps, insignificant to the untrained eye. However, the changes the neurologist sees are “significant”. Nicholas was able to perform various dexterity & cognitive tests he could not do pre-op, which in themselves are positive indicators. He did remind us that we are only into a little over 2 ½ years of a very long process and overall Nicholas is improving.

It was great to get away to the Scottish Highlands last week and, as always, great to be home to catch-up on Nicholas’ week. Reported as not a bad one at all. It started with a night at the Rhumb Line with “Silky Smooth” joining old friends for music, lead by Shane. Just what the doctor ordered. A break from the routine and catching the positive mind sparks from friends he doesn’t see too much of these days. Unfortunately, there were a few mid-week glitches, a short seizure and a minor eye infection. The eye has healed. We tend to accept minor seizures as a certain indication of his brain being overly active in the recovery process with the end result of Nicholas being more alert and aware. The week ended with a delightful summer day, taking in the sea air and sun and just relaxing, as evident in the new pictures just posted in the Photo Gallery.

In order not to overlook any opportunity in the recovery process and feeling that Nicholas might just have progressed to a stage where speech therapy might be of some value, we arranged for 2 hour evaluation interview last week with the conclusion that he will pursue a therapy program for the next several months, starting mid-July. Until then we have been instructed to get Nicholas much more involved in repeatable, routine, daily tasks, as this should eventually promote initiative. We were also told to cease doing so much for him. Let him do his own problem solving.

Taking this to heart and with the caregiver off for the day, for the first time in quite some time we spent the entire day today with him. It was inspiring. With almost no instruction Nicholas was able to sort out all kinds of daily tasks. He was very deliberate, perceptive and constantly aware of his personal safety, especially when standing and walking.

Every so often in this long process, we have day of pure satisfaction and realize how gratifying it is to have dedicated ourselves to Nicholas’ recovery. He works harder at this than we do and all of us, Nicholas included, were smiling at the end of the day. There is a lesson here for everybody.

I will be away for a week starting next Friday and will not be posting on Sunday, July 15th. The next posting will be on July 22nd.

Nicholas had a ct scan followed by his post-op check-up with the neurosurgeon and neurologist on Tuesday. The good news is the shunt is working. The less than good news is the residual effects of the anesthesia seem to be interfering with full recovery and continued progress. We were reminded by the neurologist that over the past 2½ years Nicholas had adapted to a condition of hydrocephalus and it will take some time before he adjusts to his new condition.

In the meantime the summer solstice has taken place and we are into the 4th day of a new season. The weather is great! So, any friends in the area are more than welcome to drop by and spend a little time with Nicholas. He needs the support and distraction.

There’s nothing of any significance to report. Nicholas is doing well and continues to recover from the procedure. We are looking forward to the follow-up evaluation with the neurosurgeon on Tuesday,

Happy Father’s Day

Nicholas is about 98% back to his baseline prior to the operation. So far there have been no significant changes. Just some subtle ones and, perhaps, it’s still too early to know just what, if any, consequences will immerge.

With the summer solstice just 11 days away, I asked Nicholas if he had anything to put out on this site. He said tell my friends “I’m ready to party!".

Nicholas spent this week continuing his recovery from surgery. He’s been performing increasingly better in PT Clinic and work-outs at the local athletic club. He also took advantage of some very warm, sunny weather (see Photo Gallery).

I hope Nick is doing well! I hope you are ALL doing good!

:-) Tracey M. (remember from the Gap)

I reported last Sunday that Nicholas was 95% back to his pre-surgery base-line. This was a bit exaggerated. Realistically, he returned to 85% and it will probably be another 2 to4 weeks before he’s back to normal, after which we’ll really be able to determine the positive effects, if any, of the procedure. At least with the surgery, we will have given him a chance to further recovery and progress.

The sutures and staples were removed on Friday without issue. All incisions have healed.

At the insistence of his sisters, Nicholas was given a buzz cut to balance out the part of his head that was shaved for the procedure. He looks terrific.

Again I’m making an appeal to any friends within striking distance of Manchester-by-the-Sea to stop by for a short visit. I know he’s bored with us and needs some relief and inspiration. We can only do so much in this regard. It’s up to you to provide some much needed distraction from the every day routine. Thanks.

Nicholas is in full recovery and about 95% back to normal physical functionaility. I consider this a sign of good things to come. Mentally he does seem more alert and his sense of humor has finally returned. It’s great to see him really smile and laugh and we should all take a lesson from this.

Nicholas was given the all-clear by both his neurosurgeon & neurologist this morning & finally discharged at 6:30pm this evening. The effect of the residual anesthesia is very evident in his inability to get around (walking, eating, etc.) & Nicholas is experiencing a great deal of difficulty doing these & other simple exercises. However, he should be back to his normal functioning self in several days. As the neurosurgeon stated this morning, “the brain often gets angry when we stick things into it". It does take a few days for the brain to resolve any surgical trauma. The neurologist believes any improvements resulting from the surgery will start to become evident in a few weeks and, hopefully, continue to develop. Now, we just wait to see what the outcome really will be & be sure the incisions heal properly. We also have to be extremely careful to avoid infections, as bacteria love to colonize on anything foreign (the shunt) introduced into the body. Having experienced the last few days and depending on what happens over the next few weeks, the family continues to be confident this was the right thing to do for Nicholas.

Thanks to everyone who took a moment to send their positive energy in Nicholas’ direction on Tuesday afternoon. We know it helped. As a point of interest, at 3pm, when he was scheduled to go into the OR and was napping in the the OR waiting area, he suddenly opened his eyes & was wide awake. The mind sparks hit their mark!

All’s well. Nicholas had a couple of short post-op seizures this morning but the doctors are not concerned. The CT Scan indicates the shunt is in position & working as it should. As a precaution he is spending at least 1 additional night in the hospital. Tomorrow (Thursday) he will be evaluated & discharged, unless he needs additional days of observation. When we left this evening he seemed to be quite alert & finally emerging from the anesthesia & pain sedatives. I’ll have another update tomorrow.

Thanks, Pamela, for the update. Hopefully, Nicholas will be discharged tomorrow. Once we get home, I’ll be posting a more detailed report on today’s proceeding.

We are so relieved that the surgery is behind him. Thanks for the posting Pamela- go Nick!!!

To those of you wanting to know the play by play.. N is out of surgery and recovering nicely in the ICU. He’s alert, responding to commands, excellent and stable vitals and a wee bit groggy. YAY!
xoxo pamela

Nicholas is scheduled for a surgical procedure, insertion of a Ventriculoperitoneal (VP) shunt, on Tuesday, May 15th in order to relieve hydrocephalus. Assuming there will be no complications, he will be discharged to home within 24 hours of the surgery and it should be life as usual.

“Hydrocephalus, sometimes known as Water on the Brain, is a condition in which abnormal accumulation of cerebrospinal fluid (CSF) in the brain causes increased intracranial pressure inside the skull.”

The decision to do this was made a couple of months ago based on the strong recommendations of both his neurologist & neurosurgeon and backed by second opinions. The procedure probably should have been performed when he first arrived back in the U.S. In fact it was scheduled & cancelled due to an infection and for one reason or another never rescheduled. The risk level, although minimal, is somewhat elevated due to certain conditions present in his cranium. However, Nicholas’ recovery progress now appears to have reached a plateau, and this is the next logical step in the process.

The anticipated positive results are improved walking ability, balance & physical spontaneity. The chance always exists there will be no noticeable changes. There are no expectations for cognitive improvement, which will only come with time.

Authorizing the surgery was an agonizing decision to make. However, I am absolutely convinced it is the right thing to do in order to give Nicholas every possible chance to improve and continue his recovery. I know if Nicholas were able to make his own decision, he would say, “Go for it!”

Hello to Nicholas’ world…

So I’m sure most of you will remember that while N was in the ICU in New Zealand we had weekly global mind sparks/meditation or whatever else you chose to call it. Well, let’s do it again. As many of you know, Nicholas will be going in for surgery on Tues May 15 to have a shunt (drain) placed in his brain to help manage his fluid levels. Our hopes are that this operation will improve his balance and overall mobility. I’m sure my dad will post more on the details.

Anyway my purpose here is to unite all our energy again and aim it at a sucessful operation and positive outcome. The operation is this Tues, May 15 at 3pm (EST). So light up your mind sparks and send them to our boy who will be at a hospital in Boston. A short hospital stay of about 24 hrs is expected with direct discharge back to home.

Love to all,
Pamela

Nothing out of the ordindary to report other than, perhaps a little frustration now and then. My feeling is Nicholas may get bored with the same routine from day-to-day and week-to-week, even though he has no real short-term memory. With the good weather and a chance to spend time outside it would be a great time for his friends to consider dropping by, especially on the weekends, and it would certainly help adding some variety to Nicholas’ days.

As Nicholas turns 36 on Tuesday, May 1st., we had his birthday party a few days early. It was a good move resulting in many family and friends helping him to celebrate. Take a look at a few pictures in the Photo Gallery

Hi! Sorry it’s been so long since I’ve written.
I’m so glad to here Nick has been responsive and he has been interacting.
I’ve been so busy with work! And I have been preparing a letter that will be sent out to the sports teams of Boston about the Brain Injury Walk on Oct. 13.
Nick, Peter, Lucy, and everyone else! I hope you will be able to come down and enjoy the afternoon. It will be so much fun! Just come for the fun, you don’t even have to do the walk! It is at Jamaica Pond, in Jamaica Plain, Boston. 10 am to 2 pm.
Well tell Nick I said Hi!
:-) Tracey Mitchell

As I’m on the west coast, visiting friends, there will be no significant posting today. Reports from home indicate Nicholas is having a good week.

Happy Patriots Day & good luck to Pamela, who just started her 7th BAA Marathon. Apologies to all for missing the posting last night. My flight got in very late.

As I was away, I don’t really have much to report, except Nicholas is battling an internal infection and, unfortunately, is on an anti-biotic for the next several days. He’s recovering well.

Take a look at the Photo Gallery for pictures taken at the MGHIHP PT Clinic. The therapists and Nicholas are working very hard at learning to walk without the aid of a walker.

This has been another solid and productive week with little to report other than the elimination of another medication. Having started with a regime of roughly 14 prescriptions, Nicholas is now down to 2, plus vitamin supplements. Less is definitely better.

Happy Easter. For those who wish to broaden their knowledge of this celebration, I found the following:

Easter is a time of springtime festivals. In Christian countries Easter is celebrated as the religious holiday commemorating the resurrection of Jesus Christ, the son of God. But the celebrations of Easter have many customs and legends that are pagan in origin and have nothing to do with Christianity.

Scholars, accepting the derivation proposed by the 8th-century English scholar St. Bede, believe the name Easter is thought to come from the Scandinavian “Ostra” and the Teutonic “Ostern” or “Eastre,” both Goddesses of mythology signifying spring and fertility whose festival was celebrated on the day of the vernal equinox.

Nicholas’ week started very well with progress in physical therapy learning to walk between parallel bars using one hand. He practiced multi-tasking while exercising, counting, answering questions, listening to stories, all while not losing concentration on the task at hand. He also managed 25 minutes on the treadmill. Nicholas seemed unusually alert all week which we attributed to the new anti-seizure medication. However, given his past history it could also have meant a seizure was imminent. Unfortunately, this occurred on Saturday evening but he appears to have recovered fairly quickly. He’s physically tired (postictal) but alert.

Goods things happened this week. Nicholas work at the MGHIHP Clinic was very positive. A goal has been set for both Nicholas and the students to have him walk only using a cane or Lofstrand Crutch by October 1st. To this end he practiced walking between parallel bars with only one hand on a bar and did very well. Rob continues to work on Nicholas’ strength and endurance and on Friday he walked for 20 minutes on the treadmill with only a very short break after 10 minutes. Unlike the week before, when he was exhausted after 20 minutes, Nicholas went on to do some upper body strengthening exercises. Afternoon recuperative naps are getting shorter and the spoken sentences and questions longer and more detailed. We are also just beginning and at rare moments to see some memory emerging. Hopefully all of this will continue.

Hi Friends and Family of Nick!,

Rob Gagnon here, Nick’s Personal Trainer/Athletic Trainer from Manchester Athletic Club. I have not viewed the website for a few weeks and wanted to shed some light on how Nick is doing.

The biggest and most exciting aspect has been to finally get Nick on the treadmill to work on his endurance. The first day that we got Nick on the treadmill for those 10 minutes was amazing. After Nick had left for the day I can’t begin to tell you how many members came up to me and said how great it was to see him on the treadmill. This was a huge step for Nick in his recovery.

Recently, with the change in medications, it has been difficult for Nick in regards to his balance/proprioception. But, he is on the upswing and we actually did 20 minutes on the treadmill at about a .5 mph average. He was exhausted after that, but clearly this was a good thing, and we will continue to increase the time and speed as he continues to get stronger.

Personally, it has been and will continue to be an honor to work with Nick. I feel fortunate that Peter and Lucy found me and chose me to work with Nick. To make him laugh, smile and sometimes raise his voice at me makes me smile as well.

“It is harder to climb up the mountain than down, but the view is best from the top” - Author unknown

Nicholas had an uneventful week. This is good. It would appear he’s fully adapted to the new anti-seizure medication, as his lethargy has virtually disappeared. With little else to report and as I am shaking-off the after affects of St. Patrick’s Day, I thought it only appropriate to pass on an Irish joke and a couple of St. Patrick’s Day blessings.

Two Irishmen, Patrick & Michael, were adrift in a lifeboat following a dramatic escape from a burning freighter. While rummaging through the boat’s provisions, Patrick stumbled across an old lamp. Secretly hoping that a genie would appear, he rubbed the lamp vigorously To the amazement of Patrick, a genie came forth. This particular genie, however, stated that he could only deliver one wish, not the standard three. Without giving much thought to the matter, Patrick blurted out, “Make the entire ocean into Guinness Beer!” The genie clapped his hands with a deafening crash, and immediately the entire sea turned into the finest brew ever sampled by mortals. Simultaneously, the genie vanished. Only the gentle lapping of Guinness on the hull broke the stillness as the two men considered their circumstances. Michael looked disgustedly at Patrick whose wish had been granted. After a long, tension-filled moment, he spoke: “Nice going Patrick! Now we’re going to have to pee in the boat!

For each petal on the shamrock
This brings a wish your way-
Good health, good luck, and happiness
For today and every day.

As you slide down the banister of life,
May the splinters never point in the wrong direction!

As you know, if you’ve been keeping up with this site, I was away last week and returned to find Nicholas in good shape, although a bit lethargic. This is most likely attributable to a change from his old anti-seizure medication to a new one. These types of meds are pretty tough on the body and mind and it usually takes more than a few weeks to adapt. Therefore, with little to really report, I thought it might be best to direct you to the Photo Gallery to contemplate some peaceful pictures taken in the Abacos, Bahamas, last week, as we await Spring.

Rather than fill this space with words, I’ll just call your attention to the new album in the Photo Gallery of last week’s work-out at the local athletic club. And, if you have yet to link to “The Robbins Fund", please take a look.

We are going away next weekend, so there will be no posting until the following Sunday.

From a physical perspective this was a very good week. Nicholas was introduced to a new exercise at the athletic club on Tuesday. His personal trainer decided with my blessing it was time to see how he would deal with a mechanical machine. I wish I had a picture of the look of consternation, mixed with a little anxiety, when Nicholas stepped on to the treadmill. However, with his characteristic determination he walked at various slow to medium speeds and inclines for 10 minutes with little or no problem. This was the longest he’s continually walked since the accident. Friday he was back on the treadmill for 15 minutes! This is a big step in instilling confidence in and awareness of his physical abilities.

Nicholas had two short seizures last week. Neither required medical attention and were over in a matter of minutes. Small seizures are not necessarily bad or harmful; however, having three in less than two weeks, no matter their duration, has resulted in making some adjustments to his medications. Seizures are quite common for the brain injured and are something we have to learn to live with and control. In spite of these Nicholas is doing well and even seems a little more alert than he has in the past.

On a more positive note Valentine’s Day is next week so I’ve included a little history lesson in this posting followed by “What does love mean?” answers taken from survey of 4 to 8 year olds. You may have already read these but they’re worth repeating. If you don’t care for history, skip to the survey.

VALENTINE’S DAY HISTORY

Valentine’s Day started in the time of the Roman Empire. In ancient Rome, February 14th was a holiday to honor Juno. Juno was the Queen of the Roman Gods and Goddesses. The Romans also knew her as the Goddess of women and marriage. The following day, February 15th, began the Feast of Lupercalia.
The lives of young boys and girls were strictly separate. However, one of the customs of the young people was name drawing. On the eve of the festival of Lupercalia the names of Roman girls were written on slips of paper and placed into jars. Each young man would draw a girl’s name from the jar and would then be partners for the duration of the festival with the girl whom he chose. Sometimes the pairing of the children lasted an entire year, and often, they would fall in love and would later marry.

Under the rule of Emperor Claudius II Rome was involved in many bloody and unpopular campaigns. Claudius the Cruel was having a difficult time getting soldiers to join his military leagues. He believed that the reason was that roman men did not want to leave their loves or families. As a result, Claudius cancelled all marriages and engagements in Rome. The good Saint Valentine was a priest at Rome in the days of Claudius II. He and Saint Marius aided the Christian martyrs and secretly married couples, and for this kind deed Saint Valentine was apprehended and dragged before the Prefect of Rome, who condemned him to be beaten to death with clubs and to have his head cut off. He suffered martyrdom on the 14th day of February, about the year 270. At that time it was the custom in Rome, a very ancient custom, indeed, to celebrate in the month of February the Lupercalia, feasts in honor of a heathen god. On these occasions, amidst a variety of pagan ceremonies, the names of young women were placed in a box, from which they were drawn by the men as chance directed.

“WHAT DOES LOVE MEAN?”

“When someone loves you, the way they say your name is different. You just know that your name is safe in their mouth.” Billy - age 4

“Love is what makes you smile when you’re tired.” Terri - age 4

“Love is what’s in the room with you at Christmas if you stop opening presents and listen.” Bobby - age 7

“If you want to learn to love better, you should start with a friend who you hate,” Nikka - age 6

“You really shouldn’t say ‘I love you’ unless you mean it. But if you mean it, you should say it a lot. People forget.” Jessica - age 8

It hasn’t been one of Nicholas’ better weeks. Unfortunately, he had a pretty good seizure on Tuesday morning, requiring an ambulance to the hospital and the usual blood work, CT scan, etc. All is OK. No one really knows what specifically sets these off. The last one was 6 months ago. It’s just a condition one learns to live with and, hopefully, they’re few and far between.

I will be away next weekend and will not be doing the customary posting on Sunday.

Hi everybody!
Hope everyone is doing well (after the Patriots lost Sunday night, it may be difficult to do.
Lucy, I just wanted to let you know that I am working at the Gap on Tues. and Wed., from 3-7.
Talk to you later!
:-) Tracey
….there’s always next season, right???

Damn! What an emotional let down. I figured I’d wait until after the Pats-Colts game and be inspired to post something clever. However, I’m disappointed and drained. Therefore, if you wish, there are more pictures in the Photo Gallery of Nicholas in his new and more characteristically correct specs.

It has been a rather quiet, routine week for Nicholas. One of his many medications has been discontinued and after 7 days the good news is there hasn’t been any noticeable effect. Music therapy is going well. Take a look at the new album in the Photo Gallery.

Congratulations to Danielle, Nicholas’ PT at Community Rehab Care (Medford), and her husband, Adam, on the birth Ilana, their first child, on January 12th.

Go Patriots!

Today marks the 2nd anniversary of Nicholas’ accident. As we reflect on the progress he has made over the past 2 years, we should be and are encouraged. Considering the big picture from the desperation felt during the first few days, wondering if he was even going to survive, to where he is today, just imagine what I could be posting on the 3rd and 4th anniversaries.

For those who have recommended music therapy, I can report Nicholas had his first session last week and it went very well. He will be doing this once a week for the foreseeable future. The goals are to increase and/or tap-in to his cognitive skills and improve his breathing and voice.

In case you’re viewing this site for the first time since last Tuesday, you might want to read my entry for January 2nd and follow the link to The Robbins Fund – Learn More.

Hi Lucy!

No, I didn’t work there today. Hours are being cut now that the holiday season is over. I am not working there again til next week.

About the meeting, family memebrs do come without the Brain Injury survivor. If Nick can’t make it, we’d love to have anybody else come! The group is celebrating its 6th anniversary, so plenty of food & drinks, laughter & comfort!

:-) Have a good night!
Tracey

Peter, Lucy, and anyone else interested!

This Saturday, Jan. 6, there is a Brain Injury Support meeting at Spaulding Rehab Hospital in Boston. I have been going to these meetings for more than 3 years. This Saturday we will be celebrating the group’s 6th anniversary!
The meeting is from 10am to 1 pm, and it is on the 8th floor.

The group is great for survivors and family members. If Nick can come, great! If you can come, great!

Have a great day! Tell Nick I said Hi!
:-) Tracey

Undoubtedly most of you have noticed a new addition to this website under Nicholas’ picture, THE ROBBINS FUND – LEARN MORE. If you follow the link, you should find the document self-explanatory. I want to stress that this fund is NOT for Nicholas. It has been established to assist those who have and will help him in the recovery process and, more importantly, for physical therapists who will be helping others with similar injuries, impairments and disabilities. This is an open fund accepting donations of any amount at any time for the years to come.

Peter & Lucy Robbins

I trust everyone had as good a week as this family. Check-out the most recent additions to the Photo Gallery to see how Nicholas spent the week.

All of us wish all of you a MOST HAPPY & HEALTHY NEW YEAR.

I hope I am sending this to the correct category!

Hi Nick! My name is Tracey and I am a fellow TBI survivor. I met your mother and sister a few days ago in a store where I work. I approached your mother because she was wearing a BABIS Walk t-shirt, and I went up to her and asked her if she did the walk. I have done the walk for the last three years. She told me about you, and gave me this website.

I suffered TBI a little more than 11 years ago, when I was 16 years old. I was in the hospital for 4 months (three of those months in SRH pediatric unit). When I was a patient there, I asked my parents to kidnap me because I hated being there. At the time, I did not realize that I NEEDED to be there. But now I am so grateful to all the doctors, nurses, therapists, and anybody else who help in my recovery there. My family was there for me evey step, but at the same time, let me try some things on my on, even if they new I would “forget” or lose my balance or something…..

I have short term memory loss (post it notes everywhere around my house!), occasional migraines, but you know what? I have a full time job at the high school, and part time at a retail store at the mall. After the accident/hospital/rehab (I had to take a full year off from school) I went right into my senior year in high school, went on to college to get my Bachelor’s in Sociology!

There is still so much more I want to accomplish, and there is NOTHING stopping me, and I hope you realize, or already know, that the sky is the limit!!!

Tracey

A thought to remember and practice:

Christmas is not a time nor a season, but a state of mind. To cherish peace and goodwill, to be plenteous in mercy, is to have the real spirit of Christmas. - Calvin Coolidge

Hi everyone,

There are a few things I’d like to share with you. On Saturday, December 9, TJ and I took Nick to see the new James Bond film, Casino Royal. I was a few minutes late to the house and as soon as I arrived we got Nick into the car. As we were leaving TJ was speaking in his best British accent to Nick and I was humming the JB theme song. Nick was smiling from ear to ear. As we got to the highway I promised Nick that I’d keep the speed under 160 mph with the important caveat that if “they” started chasing us there was no way I was stopping. Nick started laughing and said “No stopping!” and gestured with his hands as if to say “keep going, no matter what”. We got up to about 160 (minus 100) mph and arrived at the theatre in no time at all. Nick was definitely taken with the film; I kept looking over and he was completely awake, aware and paying full attention. He wasn’t laughing at the typical gags but definitely found humor in some of the dialogue between Bond and the female lead.

Last Friday after mountain biking in the woods between School and Pine streets in Manchester I stopped by again for about 20 or 30 minutes. I was really happy to find Nick in good spirits. He saw me from a good twenty feet away and said “Heyyyy!” We went and sat in the living room, Peter put on the CD “This is Ska” and Nick and I sat and talked for a few minutes. I asked him “Nick, why do you think the rude boys consider JB to be the ultimate rude boy ?” He smiled and was lost in thought for a minute. I thought he forgot what I asked but then he repeated my question, paused, and said “I don’t know.” I said “Sure you do. It’s because he’s a sociopathic, murderous womanizer who’s always wearing black and white.” Nick started laughing and laughing… The song “My girl Jamaica” then came on and Nick started singing along with it, right in time. I began making those classic Ska sounds “chck-it-t-ch, chck-it-t-ch”, Nick began tapping out a beat on his knees and laughing in between songs. He was definitely in great spirits and doing better than I’ve seen him in quite some time. I told him that I was happy to see him doing so well and that if he kept getting better like this than pretty soon he’d be… better. He smiled and said “Thanks.”

Bliss is Monday afternoon and a cranial scaral massage adminsitered by Maria (see Photo Gallery). For those not familair with this type of massage or therapy, I offer the following:

CRANIO-SACRAL THERAPY
by Oliver Nash

CranioSacral Therapy is a gentle, hands-on method of evaluating and enhancing the function of a physiological body system called the CranioSacral system.
The CranioSacral system is comprised of the membranes and cerebrospinal fluid which form the fluid-filled sac around the core of the nervous system - surrounding, nourishing, and protecting the brain and spinal cord.
Like the pulse of the cardiovascular system, the CranioSacral system has a rhythm that can be felt throughout the body.
Using a touch generally no heavier than the weight of a small coin, skilled practitioners can monitor this rhythm at key body areas to pinpoint the source of an obstruction or stress.
Once a source has been determined, they can assist the natural movement of the fluid and related soft tissue to help the body self-correct. This simple action is often all it takes to remove a restriction.
Other times, CST may be combined with other complementary therapies to help restore the body to it’s optimum functioning level.
Evaluation
A practitioner using CranioSacral Therapy has some key evaluation techniques available to help locate restrictions in the body, among these techniques are…
The CranioSacral Rhythm (CSR)
The CSR is a very subtle rhythmical movement which is transmitted via the muscular, nervous, and fascial systems and can be felt anywhere on the body.
The practitioner feels for the strength, amplitude, and quality of the rhythm in different places on the body to track down areas where the rhythm is impaired - this helps the practitioner find areas where healthy tissue function is restricted.
A person with a left knee problem may have a healthy, ample rhythm all down the right leg but restricted rhythm from the knee down in the left leg.
To the practitioner this indicates a restriction in the left knee or the nerve supply to that area.
Fascial evaluation
Connective tissue (fascia) is continuous in the Human body from the top of the head to the bottoms of the feet.
It is layered with pockets between the layers containing the structures within the body such as organs, muscles, bones, etc.
Normally, fascia is free to glide a millimetre or so and maintains a fairly elastic property.
Adhesions, and restrictions can be pinpointed by testing the free gliding ability of the body’s fascia - feeling for areas that do not move as easily as others.
The practitioner can feel the left knee restriction of our imaginary person by taking hold of both ankles and gently pulling towards the feet, the fascia in the right leg moves easier and further than the fascia in the left leg, which is bound up in the left knee.
Typical treatment session
In a typical CranioSacral Therapy session the client remains clothed and lies on their back (if possible) on the treatment table.
The therapist may place their hands on key evaluation areas such as the ankles, head, neck, lower back, assessing the state of the client’s CranioSacral system.
The treatment itself involves the application of very light forces applied by the therapist’s hands.
Limbs may be picked up and moved gently and slowly as the body tissues are allowed to ‘unwind’ themselves.
A typical session lasts an hour - though half-hour sessions may be better for children and infants.
It’s uses
It’s far-reaching effects enable CranioSacral Therapy to be useful for a wide scope of health problems, including:
• Headache
• Migraine
• Irritable Bowel Syndrome
• Digestive problems
• Chronic back pain
• Depression
• Strokes
• Brain and spinal cord injuries
• Problems of the brain, spinal cord, and nervous system
• Multiple Sclerosis
• M.E.
• Menstrual problems
• Menopausal problems
• Arthritis (osteo & rheumatoid)
• TMJ dysfunction (jaw problems)
• Chronic Pain Syndrome
• Post-operative adhesions
• Dyslexia & Dyscalclia
• Allergies
• Neuralgia
• Sinusitis
• Tinnitus
• Vertigo
• High & low blood pressure

I was away all week and can’t report anything specific on Nicholas’ progress. Will & TJ took him to see Casino Royale. (Thanks guys. Much appreciated.) Daniel Craig received his approval and should be considered one the best 007’s.

We are very close to ending a recovery phase, as Nicholas will have his last session of therapies at CRC (Medford) on Wednesday. Then he’ll take a couple of weeks off for the holidays before starting the next one which, along with continued PT, will include both music and speech therapies.

Dear Nick,

Hi. My name’s Alex, and we’ve never met. I hope I’m not intruding. I’m also in the process of recovering from a very bad TBI, and I came across your website while googling something about the healing powers of music for brain injuries.

First, I just wanted to say that you have a wonderful website, and an incredibly devoted and bright support network. I’m blown away by what I see here. Judging by all this, I can only guess that you are a truly amazing person and I’m sure you have the inner resources and external support to make a “miraculous” recovery.

Second, I wanted to ask if you had ever tried out that “healing instrument” your friend ina mentioned in her post. It sounded promising, and I looked into it, but they seem to have discontinued the product. If it really works though, I’d like to try to find out more about how it works, and try to find one/beg one of my musical friends to make one for me. Maybe you could put me in touch with your friend ina so I can ask her more about it…

Last, I wanted to say that if you ever want to talk to someone else going through somehting similar, I’d love to talk with you. I suspect we have quite a bit in common. I’ve figured out a lot of great healing stuff, and I’m always looking for like-minded people to share ideas with, but I often find the whole …er…tbi “scene” as it were, a bit offputting because there’s too much negativity and because I don’t really want to get into embracing this as an identity, yatta yatta…That said, it is sometimes nice to talk to someone who understands, and you sound like a fine chap. I’m not sure how to leave my contact info without inviting an avalanche of promises to improve my mortgage, my car insurance rate and my penis ( I have none of the three, but the spam still cometh) so I will just leave you my junkmail address, and if you want to write me there, we can exchange “real” contact info. It’s makeitst0p@yahoo.com. (Btw, not sure if you can use email yet—I prefer the phone as well because I have ocular problems, and because it’s just nicer.)

Of course, I completely understand if you are not feeling up to communing with random girls from the ether. But either way, good luck with everything. I’m sure you will kick this tbi’s butt.

cheers,

Alex

There will be no posting on Sunday,December 3rd, as I’ll be away for a few days. All’s well.

See the new pics in the Photo Gallery. They’re better than the written word this week.

Well, I have spent about 4.5 hours with Nick with our past 3 visits, and I do have to say he is one remarkable person! As his new personal trainer, I look forward to many hours of fun working with Nick. The continued strength gains will occur over time, and I feel honored to have the opportunity to aide in his recovery. Eat lots of turkey this week, because next week we will be burning those calories!
Rob Gagnon

“it is tougher to climb up the mountain than down, but the view is best from the top”
~Author unknown

In anticipation of a new therapy schedule starting in 2007 Nicholas had an initial session/evaluation on Thursday with a personal trainer at the local athletic club. It was more of indoctrination for both of them, the trainer to see what Nicholas could do and Nicholas to see how the trainer was able to “handle” him. The hour and a half went smoothly, and we anticipate these sessions will be very valuable. Along with various exercises, Nicholas will also be exposed to a very active, busy environment, and he will have to concentrate more so as not to get distracted. This in itself will be a cognitive exercise as well as physical.

So, we’re sitting around the table this evening and I have tunes playing on the laptop. The next thing I know Nicholas is singing along with the Grateful Dead and not missing a word. Take a look at the latest posted in the Photo Gallery.

Lastly, Chinese take-out for Sunday dinner and Nicholas breaks open a fortune cookie, which reveals the following:

“Courage conquers all things; it even gives strength to the body.”

Nothing startling to report this week.

In anticipation of a probable change in Nicholas therapy routines, starting in 2007, we interviewed a personal trainer from the local athletic club, who is very enthusiastic about the prospect for working with him a couple of days a week and will “carry through” many of the strengthening, stretching and balance physical therapy exercises. We feel this will be a good change, as it will get him to the gym, so to speak.

Check-out the Photo Gallery. You can probably tell Nicholas is laughing about the “new James Bond”.

I know. It’s Monday morning and I forgot to do the posting yesterday. I had this feeling last night, when I went to bed, I had forgotten to do something fairly important. Must have been distracted by the Patriots loss.

Returned from 4 days away to once again find Nicholas in great shape and do continue to believe the separation for all of us is good. It does break-up the monotony of routine. Speaking of which, Nicholas had a real treat this weekend. 3 of his very best friends dropped by Saturday evening and took him out to dinner by themselves. No guardian parents or caregiver. Just the boys (check-out the photo gallery). These guys have been together forever, going way back to the early childhood. I could immediately tell the positive effect, as Nicholas was fairly tired the next morning, probably from being over-stimulated (a good thing) but woke-up smiling. I can’t begin to tell everyone in Nick’s World how important it is to interact with him. He needs to see you or at the least hear from you (phone him). Being around immediate family is security; being around friends is inspirational.

Nick’s World gets an early posting this week, as I’ll be away for a few days. The results of discontinuing Prozac are having the desired effect. The real Nicholas is beginning to reappear as the drug begins to vacate his system, which takes a minimum of 2 weeks. He’s becoming more animated each day. Take a look at the recent pictures in the Photo Gallery. They were taken the other day with him responding for the camera to certain situations. Improv in the kitchen!

Having been away most of the week, I can’t report 1st hand on Nicholas’ week, except the reports from his therapists were good. On the other hand I can report on a delightful 4 days sailing with good friends on the Chesapeake (see Photo Gallery). It was another good, quick break for us, as it was for Nicholas. He always appears to be on top of his game when we return from these excursions. What do you suppose this means?

This posting is one day earlier than usual, as we will be away for a few days. All is well. Nicholas continues to gain in physical strength, working on fairly specific muscle groups and functions. At the suggestion of his PT, we have reinstituted the exercise bicycle to improve his endurance. The first time he got on it at after 2 months, he pedaled for almost 20 minutes. Good stuff. He has also just begun to work with a visual recognition/identification program on the computer. Finally, we make it a point each evening during this glorious, crisp autumn weather to sit quietly watching nature at her best as the sunsets of the marsh. I only wish everyone could be as fortunate.

We’re just beginning to experience signs of initiation in Nicholas. Verbal more than physical. Every so often, when given a direction or cue that might not be clear to him, he will ask an appropriate question. Also, now that the reduced dosage of some meds is beginning to have an effect, his sense of humer is creeping back. Progress in small steps!

Pamela, an integral part of the family team, has just departed for Boulder, Colorado, and all of us wish her well as she begins another phase in her life. Having her there will add positive dimension to Nick’s Recovery with opportunities for Nicholas to eventually visit her and take in some of clean, mountain air… maybe even get a little of that Rocky Mountain high. The other members of the immediate team, Lucy, Kristin, myself and now Jackie, are also looking forward to having a recovery base in the Rocky Mountain state.

Hello to the people of Nicholas’ world… Today is Sept 28, 2006 and it was exactly one year ago today that N was discharged from Spaulding to return home with my parents. I find it extremely fitting that today was my last day working ats a physical therapist at Spaulding. It was more difficult to say farewell to N’s therapy team than it was my own co-workers. 9/28 is an important date to the Robbins Nest as several life changing events have happened on this date. I am leaving my brother in good hands with the rest of my family (including Jackie)and headed out west to live in Boulder, CO for a while. Please be in touch if you find yourself in the wild west.

Love and health to all…
Pamela

Nicholas has not had speech therapy for a couple of months, as it was considered ineffective due to his lack of short term memory. Last week he was given a speech evaluation and will commence this week with combined speech and occupational therapies, along with continued physical therapy. He has also appeared to be somewhat lethargic and emotionally complacent over the past few weeks. Having reported this to his doctor, and on another positive note, some of his medications will be reduced to determine if there is any effect.

There’s nothing to report this week except Nicholas continues to respond positively to therapy and other healing processes.

Ireland was grand, as always. The separation for an extended period was beneficial for everyone for reasons too numerous to explain at this site. Nicholas had a good 10 days of activity with numerous people contributing. Now that Labor Day has passed, it’s time to bear down again. His vision is now back to the level it was prior to the cornea problems. So, he’ll be working on neuro-visual exercises, as well as two separate, weekly physical therapy sessions. One is individual therapy at Community Rehab Care, which he’s been doing for almost a year, and the other is relatively new at a clinic conducted at the MGH Institute of Health Professions. Along with these, he’ll be doing aquatic therapy and jin shin jyutsu (http://www.jsjinc.net/), plus a cranial sacral massage each week. GO NICK and -

May the road rise to meet you
May the wind be always at your back
The sun shine warm upon your face
The rains fall soft upon your fields…
(Traditional Irish Blessing)

Nicholas seems to have enjoyed being back in the family house on Cape Cod. I sense he feels more “at home” there, as he should. The weather was terrific. It was a great time to relax and recharge the batteries.

Don’t be concerned if there is no posting next Sunday. The posting parents are off to Ireland for 10 days. We’re giving Nicholas a break from our constant company. While we’re away, if there are any Nick friends in the area, please drop-by.

We’ve had a great week on Cape Cod. Enjoying wonderful weather, good friends dropping by, hanging out and taking life slow. Nicholas is taking advantage of some well-deserved R & R. Sleeping late, eating well, soaking up some sun and taking in a movie or two. If the weather and wind cooperate, we’re going to try a little sailing before heading back home in a few days.

Looking for Bert Menninga. Please contact me.
Laura.Lambrecht@sbcglobal.net

Great to have some of Silky’s old friends dropping by this week. Shane, Felix, Julia, Jenny & Baby Jacob, thanks. It means a great deal to him.

All of us are off to Cape Cod tomorrow for a good break from the routine. We’ll be doing a little, daily PT for Nicholas to continue his strengthening regime, but, other than that, just hanging-out and enjoying life in another environment.

Any and all are welcome to join us.

Nicholas spent the first part of the week taking it easy and avoiding the intense heat and humidity. He continued to work on his core strength and balance with positive results.

We’re looking forward to going to Cape Cod next week for 10 days. I think this will be a good break in the routine for Nicholas. If anyone out there wants to drop by next week, we have plenty of room and I’m sure he’d be very glad to see you and just hang-out.

It’s late and been a long day. Nicholas is making great strides in his new physical therapy regimen and his vision has retuend to “normal". We’re smiling.

All’s well. It’s great to have friends dropping by from time-to-time, as it does wonders for his mind and attitude. I realize visits are not easy for various reasons. Yet, the interaction does have a very positive impact. If you are unable to visit, give Nicholas a call. He is at his conversational best when on the phone.

Nicholas’ cornea abrasions are healing very well and his vision seems to be close to fully restored. Between his out-patient physical therapy at Community Rehab Care and the clinic at MGH Institute of Health Professions his core strenth is improving every week and with this his ability to do more activities without tiring quickly has improved. The cognitive rehab continues to be extremely slow. We’re just waiting for the time his short term memory begins to reestablish.

Pictures can speak louder than words. So, take a look at the latest additon to the Photo Gallery, taken earlier this week.

Hi Nick and family,
we were wondering tonight how Nick was doing, and hey presto we remembered your website.
Nice to hear of you progress, sounds like you have all achieved so much, and you have had fabulous care.
Will continue to check in, thanks for keeping the updates going.
Best wishes,
Jo R
On behalf of
ICU Dunedin, NZ

There will be no posting on Sunday, July 2nd, as we’re off for Cape Cod with no computer for a long weekend.
This will be the first time in 2 years Nicholas will spend some meaningful time at a place that has and is a real part of his life. All’s well.

Nicholas had a follow-up appointment this week with the cornea specialist, who was very pleased with the healing process. Now that the vision issue is seemingly under control, we can concentrate on other matters and get back to the recovery progress. In this vein, he was evaluated this week by one of the leading physical therapists in this area, who is going to work with Nicholas, along with his current therapist, using a different philosophy and approach. I am feeling very positive about this and am looking forward to eventually being able to post some good results.

To all of Silky’s friends out there, he misses you guys and needs “the love”. Your visits mean more to his recovery and maintaining his good spirits than you can imagine. As difficult as it may be, don’t be strangers.

Happy Father’s Day for all the dads out there in Nick’s World. It’s been a good one here with a couple of hours out in the boat for lunch and cruise around the bay. I don’t recall seeing Nicholas as content in over a year, as he was out on the water. Truly in his element in tune with the motion of the boat, a beer (non-alcoholic) in his hand and his eye on the horizon.

And, by the way Nicholas passes on his congratulations to Kate & Mark.

The rain has stopped, the sun is out, the air is warm, the dispositions have improved, so most of the day was spent outdoors just chilling and playing frisbee. We’re smiling and laughing because Nicholas is returning to his old form, which seems to be directly related to his improving vision. Jackie, the caregiver, has become an instrumental member of The Team (very well accepted by Nicholas). Check-out the photo gallery and you’ll see her.

Nicholas started adaptive sports therapy last Tuesday by spending almost 2 hours “windsurfing” (see page 2 in the photo gallery for windsurfing pics from last year) on the Charles River Basin. He didn’t want to quite. Next session he’ll be sailing standing. Go Nick!

Knock on wood. It appears Nicholas’ eyes are healing well, in spite of a set back on Memorial Day, when yet another scratch appeared on his left cornea under the contact lens. With the healing we’re beginning to see some of the old guy back in terms of sense of humor, awareness, etc. He has been much more “with it” the past few days. He starts adaptive sports therapy on Tuesday. We’re looking forward to adding another dimension to his life and recovery program.

Nicholas vision is slowly improving and, hopefully, he’ll be back on track in the near future. He has an appointment with his corneal specialist on Thursday and we’ll be able to get a progress report on the recovery.

Aquatic therapy is working-out very well. Take a look at the Photo Gallery on this web site for for some new pics of Nicholas in the pool.

In the meantime he has expressed from time-to-time how much he misses his friends. If any of you are in the area and have time, drop by for a quick visit.

I sense we’re on the right track to resolving Nicholas’ vision problems. In order to protect and heal his corneas, he is now wearing “permanent” clear contact lenses, has a tear duct (drain) plugged is each eye to promote corneal lubrication, and has a dose of liquid tears 6 times daily. It is anticipated the healing process will take about 2 weeks. Nicholas is no longer suffering with the inability to open his eyes, due to pain, and claims his vision is getting a little better. Through all of this he still has somehow managed to keep most of his sense of perspective and sense of humor, although he did mention the other day how much he misses his friends.

I do believe the ark will be full and floating by noon tomorrow away from the north shore of Massachusetts . All is well. Glug, glug!

If you recall the Parent Posting of April 16th, I mentioned Nicholas had “leveled off”. It would appear that this was due in part to a problem with his vision. He continues to be impaired with corneal edema, which has resulted in cloudy vision. It was described to me as being similar looking through a really dirty windshield. I feel that Nicholas has been distracted by this condition and once resolved, he’ll get back on track.

A new live-in caregiver, Jackie, has been with us for 4 days and seems to have “connected” with Nicholas. So far, we are very pleased. She should be a great help to all of us.

New photos of 35th birthday party now posted. Thanks, Claire.

It’s 12:15 am (EDT), May 1st:

HAPPY 35th BIRTHDAY, NICHOLAS!

The last birthday was celebrated while an in-patient at Spaulding Rehab. He’s come a long way in one year, and we’re anticipating making even more progress before he’s 36.

All’s well and there is nothing of note to report at this time.

Nicholas appears to have leveled off both physically and cognitively over the past few weeks. These plateaus are very common in the recovery process. However, we are seeing hints of his short term memory beginning to appear and hope this continues. It would be a major step and one we’ve been waiting for.

The neuro-optometrist continues to work on Nicholas vision problem. Although he still has mild cornea edema and receiving treatment, he is recovering slowly. Also, based on the latest neuro optical tests, there does not seem to be any neurological changes that would indicate a regressive condition existed. The doctor feels that as soon as Nicholas’ vision returns to “normal”, he should regain his ability to scan, so he can see more clearly where he going, what he’s eating, find objects in front of him, etc. It should also help on the physical side with walking and balance.

Next week we’re going to introduce Nicholas to aquatic therapy, which he will do once a week to supplement the three basic therapies (PT, OT and Speech). I am sure a change in routine is going to be good for him. In addition in about three weeks he will also start adaptive sports therapy through Access Sport America. This is a terrific organization. If you are interested take a look at http://www.accessports.org/.

Now that we are experiencing some warm weather, we hope to see more of Nicholas’ friends dropping by for some time spent sitting outside on the deck and “chilling".

There will be no Parent Posting on Sunday, as I will be away until Thursday.

Back to daylight savings! What a blessing! It’s my favorite day of the year. With the unusually warm, New England weather, Nicholas spent most of the afternoon soaking up the rays, chilling after a busy week and feeling better for it. We all did.

The Vernal Equinox took place 6 days ago and for those who are not familiar with this phenomenon, you might be interesting in the following:

“As the newly reborn sun races across the sky, the days become longer, the air warmer and, once again, life begins to return to the land. Twice a year, day and night become equal in length.

To the elders of the Olde Way, these times, equinoxes, were markers in which seeds would be planted and then harvested. The first of these, the Spring or Vernal Equinox occurs on or about March 21st.

The ancient goddess, Eostre, a Saxon deity who marked not only the passage of time but also symbolized new life and fertility, was the key symbol of this celebration which was also known as Ostara. Legend has it that the goddess was saved by a bird whose wings had become frozen by the cold of winter. This process turned the bird into a hare. Yet this was no ordinary cottontail; this long-eared rabbit could also lay eggs! The main symbols for Easter are the egg, for new life or beginnings, and the rabbit/hare, for fertility.”

Also:

“The Vernal Equinox is a time of renewal, both in Nature and in the Home. More than just physical activity, “spring cleaning” removes any negative energy accumulated over the dark winter months and prepares the home for the positive growing energy of spring and summer.”

And, so we are preparing for longer hours of daylight (sun),warmer days and time outdoors to pursue alternative therapies (adaptive sports, aqua therapy, etc.) to supplement Nicholas’ routine rehab program.

Unfortunately, I’m only in MA about once or twice a year these days. My good fortune, is having the opportunity to hang out with Nick whenever I can (which seems to be each time I’m back in town). This past Wednesday, Elizabeth and I were able to go over to the house and hang out with Nick for about an hour before he had to run off to an appointment. It was great!

The last time I saw Nick, he was at Spaulding (I can’t exactly remember when). His improvement is obvious… when I mentioned that I’m living in Indiana and he responded by telling/asking that I’d been there for a few years, I was impressed by his ability to remember that, as well as to say not only the words, but to put the phrase together so well. We were on the couch overlooking the marsh and ocean, and when we complimented his view, he thanked us. A few things really impressed me about his progress: he laughs to appropriate comments and conversation, is able to eat a sandwich on his own while holding a plate to catch the crumbs, uses short slang terms like “cool,” and seems really aware of what’s going on around him.

I know these might seem small to those who see him do these things everyday, but after not having see him for months, it was amazing to see this progress. I really wish I were able to be there more often, and am glad others are. Keep the notes coming.

I hope everyone out there has a wonderful weekend and week.

Hugs and love
Jess

It was a year ago yesterday we landed back in the U.S. and one year ago today Nicholas was admitted to the Spaulding Rehab Hospital. To say the least, he’s come a long way in a year and, although a few days late, perhaps it’s only fitting to share a few St. Patrick’s Day thoughts:

St. Patrick’s Day is an enchanted time - a day to begin transforming winter’s dreams into summer’s magic.

Always remember to forget
The things that made you sad.
But never forget to remember
The things that made you glad.

Always remember to forget
The friends that proved untrue.
But never forget to remember
Those that have stuck by you.

Always remember to forget
The troubles that passed away.
But never forget to remember
The blessings that come each day

And, finally an Irish Blessing:

As you slide down the banister of life,
may the splinters never point in the wrong direction!

Nicholas’ continues with his slow, steady recovery and seemed to be concentrating last week on expressing thoughts and observations in rather sophisticated sentences. Lifearound the house is a little different these days, now that Kwasi (home caregiver) has come on board. All of us are doing our best to adjust to having added another member to the team.

Will’s comments regarding his visit on Wednesday were much appreciated, especially by Nicholas. It would be great for him to have others do the same. Let him know where you are and what you’re doing and thinking.

Hi everyone,

On Wednesday when I swung by for a visit Nick was in bed, just finishing his afternoon nap. When I walked into his room I said “Alright Sleeping Beauty, time to get up.” Nick’s eyes popped open and he started laughing, he then said “Hey man, what’s up?”

I went downstairs and had a drink with Peter as Kwesi, Nick’s assistant, got some shoes on him and helped him to the bathroom. When Nick came down we sat around and talked about some of the places we’ve been together, but spoke mostly of the trip we took a few years ago to the Dominican Republic. We reminisced about a swim we took deep in some cave up in the hills behind Puerto Plata and how inadvisable and thoroughly excellent it was.

I then tuned the stereo to Rockers on 88.9 FM and the easy rhythm of reggae filled the room. Nick immediately closed his eyes, smiled and started tapping his foot and nodding his head; it looked to me as though he was bathing in some warm and familiar environment. After relaxing for a song or two I grabbed the congas that Jon gave him on May 1 last year and another drum that was sitting there. We started jamming a bit, slow at first but, letting go of our inhibitions, began to keep time with the music and played for a while.

In talking with Nick it seems as though his voice is coming along well, although his thoughts still often seem random and can be hard to follow. Nevertheless, every time I go by he is better, and every time I see him I tell him that; every time I tell him that he seems better he looks me square in the eye and says “Thanks” while making a fist and subtly pumping it as though to say “Right on”.

So, here we are a year later and progress continues; we’re all real lucky to have Nick around still and I’m sure everyone out there looks forward as much as I do to his continued and ongoing recovery.

Love to all,
Will

On Tuesday evening our family and Nicholas’ therapists from Spaulding and Community Rehab Care (Medford) participated in the Massachusetts Institute of Health Professional’s Interdisciplinary Grand Rounds. The subject was Nicholas and entitled “Recovering From Brain Injury: A Year In Perspective”. It was a fascinating, extremely interesting and therapeutic experience for all of us so closely involved in Nicholas’ recovery. The underlying theme was the value of team work. There is no doubt in my mind Nicholas would not be where he is today without a great team and their total dedication.

Dear Nick,

Hey there my dear friend!!

I just want to thank you so very much for the sweet
Valentine’s poem. That was very thoughtful and well written. You and Peter make quite the poetic duo!!! Im very impressed and inspired to write my own! I thought I would hit you back with some words of my own, from a song I wrote:

Time flows by, never a moment the same
My life is a river, the only constant is change
I will swim through this life with the moon in my eyes
Finding a groove on this sweet dream through my
mind….

In a meadow golden with the mountains towering high
I am dancing to the sound of the wind that is passing by
And in the hush of the buzz of the city air
Serenity of my heartbeat and the intent to care…..

You know everything, allow yourself to remember
Your life may only go so far….
As your will to surrender…
To the Love that YOU ARE!
To the love that you are.

Well thats one of my favorite concepts of
life…knowing that we ARE LOVE at the core. That is
the most powerful reminder that I ever have. And you,
Nick, are LOVE at the core. You eminate such light I
can feel you glowing right now.

I miss you! Bobcat misses you too. We are living in
New Mexico in the artsy town of Santa Fe. We really
like it here and are making it home for now. But
whenever we come to Boston you know we will be coming to visit you. We visit you in our dreams all the time, you are with us like a brother always, we are with you right now.

The most exciting thing I have to share with you is
that Bobcat and I are PREGNANT! I mean, of course, Im pregnant, but both of us are going to have a baby next October!!! WOW! Can you believe it? We are going to bring a soul of light into this world. You gotta keep up that poetry so you can write the little one sometime. We are also getting married this summer on the summer solstice, the longest day of the year. Many things bubbling in excitement in our world. We are so happy and very much in love……

We love you so much Nick. We are sending you huge heaps of support and encouragement and inspiration. Keep up the good work, all the therapies I know are challenging but we give you big HOORAHS for all your progress. You rock!

I will stay in touch more often, sorry for the long
times between emails. I want you to know that you are always on my mind and in my prayers.
You are a stellar human and rock solid friend.
Take good care and please give my love to your
wonderful Peter and Lucy.

Big love from Daisy and Bobcat!!!

Nick, Shane here, I was excited you recognized my voice on the phone after not seeing me for 2 months!! ( i tested him )

I sent an update out to the burning man family about your recent success being patient of the year! Everyone will be glad to know you are doing ok and keepin on…
i love you man, keep up the good work!!
Shane

It’s been an interesting week.

Monday, being a holiday, meant no therapy for Nicholas. So, he slept-in and was helping me make pancakes for a late breakfast. We were standing side-by-side at the kitchen counter and suddenly he was gone. He hit he deck rather hard and cut his lower lip. After eating his pancakes, we decided to take a trip to the ER which resulted in 6 stitches. Nicholas didn’t miss a beat. Just like taking a stick or puck in the mouth or catching the wishbone on a bad jibe. It didn’t slow him up a bit.

On Saturday Kwasi moved into the house. He’s a full-time, certified caregiver and a delight to have around. We’re confident he’s going to be a great help all of us, and especially Nicholas. Kwasi is a Ghanaian and of the Ashanti tribe. As an Ashanti part of a given name is the day of week on which one is born. We now have new names to learn and Nicholas is Kwabena Mensah. It will be an unexpected pleasure for us to learn of a new culture.

The warm weather arrived but we never got to try any cross country skiing. It was only going to be a short exercise just to see how Nicholas can balance walking on skis and using poles. When the conditions are right, we’ll give it ago another time.

Progress continues to be agonizingly slow, which is to be expected. All of us just need to be reminded that it’s only been a little over a year since the accident and realize and take heart in just how far Nicholas has come to this point.

The rehab therapists have decided to try a new approach. It appears that Nicholas is more responsive to speech therapy when combined with physical activity. Therefore, two days a week he will receive a co-treatment (simultaneous treatment) of both physical and speech therapy. This was initiated last week and quite successful.

We’re back and the break was good for everyone. Nicholas definitely enjoyed the change in scenery. This, combined with finally shaking a cold and getting plenty of rest, resulted in a renewed alertness and getting back on track after a couple of very mediocre weeks. Perhaps with all the snow that landed on us today, he’ll try some cross country skiing, if we get a fairly warm day this week.

So as not to alarm Nick’s World, we’ll be away for a few days, returning on Wednesday, Feb. 8th, and there will not be a posting on Sunday. All’s well.

In order to bring a little variety and more stimulation into Nicholas’ daily routine, his therapists have recommended his schedule for physical, occupational and speech therapies be reduced from 5 to 4 days a week. We concur. Starting immediately he will have Wednesdays off. This will give us the opportunity to integrate alternative therapies (adaptive sports, Integrative Manual Therapy, aquatic, etc.) on Wednesdays as part of his weekly routine.

What can I tell you about Nick’s Recovery that might be a little different? Nothing much. In spite of a lingering cold, he continues to plug away in his therapy sessions. Inspired by the “January Thaw”, we have been much more attentive on the weekends to activities away from the house: dinner with a friend at a Thai restaurant in Friday evening, an excursion to the Parker River Wildlife Refuge on Saturday, and participation with some new friends in a drum circle on Sunday. There is no doubt the stimulation Nicholas gets from these activities have a very positive effect.

I was beginning to wonder if it was purely coincidental having the web site it go down on the 1 year anniversary of Nicholas accident and am very glad to have it up and operational, if only put Nicks world at ease. The number of I emails I received asking if everything was OK was almost overwhelming but certainly heartening knowing how many out there continue to follow his progress.

All is indeed very well. Although Nick has been slowed-up every so slightly by a cold, he’s been working hard over the past 2 weeks on his strength and balance. He has also become more observant of his surroundings and conversational, initiating questions concerning things around the house and expressing opinions.

I have just finished a book, I”LL CARRY THE FORK, by Kara L. Swanson, who is recovering from a traumatic brain injury and have been reading to and discussing some passages with Nicholas. The following is a poem by Mary Anne Hershey that inspired the author not to give-up and one, as Nicholas agrees, is good advice for all of us:

Live with intention,
Walk to the edge
Listen hard,
Practice wellness
Play with abandon,
Laugh
Choose with no regret,
Appreciate your friends
Do what you love,
Live as if this is all there is.

Welcome back to Nick’s world. Rest assured that it was only the website that has been down the past couple of weeks. Things continue to go smoothly with N. The year anniversary of his accident came and went and with that passinge I want to thank EVERYONE out there for your love and support over the past year. It’s shocking to think about where we were at this time last year and where we all are now. The ICU crew in NZ is particularily in my thoughts lately. Thanks to one and all … Keep up the love, positive vibes and mind sparks!
Love,pamela

Hello Nick, we missed you at the Lodge on last Friday night, but gave you a large toast and a wish for recovery in the new year. I was reminded of you the other day. We have a new tenant that runs up and down the inner stairs instead of walking like the rest of us slower people. I always knew when you were home by the pounding on the steps and knew you were off to your next adventure (or else running late!) We all wish you lots of energy in the next year and are VERY glad that you are around for 2006.
Much love, See you soon
Elizabeth and David

A wish has been made and a goal set to welcome 2006. One of Daruma’s eyes has been filled-in. He now occupies a high perch, as is the custom, in the house, and we anticipate filling in the other eye before 2007. Nicholas just stated that this will be his “coming-out” year. I asked him if he had any words for NicksRecovery World and he said, “Wish everyone a Happy New Year.”.

My name is Danielle and I have been Nick’s physical therapist for 2 months now at Community Rehab Care. I have to say that Nick is one of the most challenging and rewarding clients I have worked with in my 3 1/2 years of practice. Thanks to this website I have been able to really get to know Nick’s true character, soul and spirit. I even watched his movie and made it all the way through despite bets made against me!

In PT, Nick shows his inner strength with every new activity we do, from cycling, to soccer and ball toss, to push-ups and wall-squats. We even had an episode similar to the snowball in the face… and I am sure it won’t be the last!

Since Nick and I began working together, his gains have been steady. His posture and balance are improved enough so he can show off his moves on the dance floor (or so I hear)and even though he still likes to sneak into his nap pose when I turn my back, he has had enough energy to party with his friends and family during this special holiday season which is what matters most. From my experience, if it weren’t for all of this love and support, he would not have come as far as he has today. So thanks to everyone who has helped along the way.
Peter, a special thanks for all of your involvement in our treatments.

Best wishes for a happy new year.

Danielle

Check-out the newest additions to the photo gallery. We have a great deal to be thankful for this Christmas Day, especially to everyone in NicksRecovery World for their positive energy over the past year and those ahead of us.

If anyone has any photos from Sat night at the trap…please post them. we’d love to have a look (especially the dancing ones).

Stimulation is wonderful and I have to thank the gang at The Trap last night for providing a memorable evening for Nicholas. The music, friendship & spirit of love and support were great and to see the smile on his face when he got to dance was the best Christmas present I can imagine. Yes, stimulation. I truly believe as a result of last night’s activities, today Nicholas was the most alert and perceptive as I have seen him in quite some time.

I stumbled on the following and pass it on to all reading this site to bear in mind as we celebrate the holidays:

Give me a sense of humor, Lord,
Give me the grace to see a joke,
To get some humor out of life,
and pass it on to other folks.

wonderful picture of nic great to know his temper is active and well nice report pamela xx"ole grams”

Ok I can pick up the slack this week as far as postings go. Per dad’s report, N’s friends came out to the house on Sunday to play in the snow. They engaged N in a friendly gentle snowball fight. I’m happy to report someone hit him in the face with a snow ball. Yes, the sibling rivalry is still alive and well. It’s nice to know that I finally have someone on my side after the years of torture. The snowball got N a wee bit fired up and he was able voice his distress loud and clear…hey, whatever it takes to hear that voice. But in the end he laughed it off like the rest of us.
love, pamela

It’s late. I’m tired. And, all’s well.

I am posting this a few days early, as I will be out of town until Monday. I don’t want anyone to think anything has gone amiss if there is no posting to read on Monday morning. Nicholas is having a good week. He’s maintaining his weight and is physically gaining strength daily. Not only is he receiving an hour of PT daily at CRC (Medford), he also gets a work-out at home using certain recommended exercises. Although his cognitive development continues very slowly, he’ll be in the best shape possible when it really kicks-in. He finally went to the dentist this week for a full check-up & evaluation. In spite of all that’s happened his teeth were proclaimed “perfect”… no problems. He also had a follow-up examination with his neurologist, who indicated that Nicholas was in much better shape, physically and mentally, than his last visit a month ago. All good news to report.

Nicholas had a shortened week of therapies, due to the holiday. However, he did continue to work on therapy exercises (homework) at home. As a result he has become fairly adept getting around using both standard and rolling walkers and this will eventually give him some real independence. We have realized that the more he does the more stimulated he becomes, even if long days of activities are physically and mentally tiring. Therefore, we are not being quite as protective of keeping his life as peaceful and relaxing as possible. A variety of activities usually results in more interaction with those around him and a greater cognitive awareness. He took in a movie on Saturday and the outing was “silky smooth”. After the movie he was very talkative and observant. On our way out that evening to party with some old friends, who he knows, he said to tell them “he’s not ready to party yet but will be”. Won’t we all, when he is!

We return thanks to our mother, the earth, which sustains us.
We return thanks to the rivers and streams, which supply us with water.
When you arise in the morning, give thanks for the morning light, for your life and strength.
Give thanks for your food and the joy of living.
If you see no reason for giving thanks, the fault lies in yourself. (Tecumseh)

Apologies for all those out there in NicksRecovery land. All is OK. I’m sure everyone has gone to bed and awakened at some strange hour knowing they forgot to do something. It happened to me last night and I’m just now realizing what is was. So, here I am a day late.

Nicholas had another unremarkable week (good) of slow and steady progress in physical therapy and pretty much maintaining a status quo in both speech & occupational therapies. Not much will happen in either of these until his short term memory kicks in. However, the therapists are working hard to find a few building blocks.

As mentioned last week, in order for Nicholas to get every break we can provide, he spent almost 2 hours on Wednesday having an extensive optometry evaluation. Unless there are big strides (politically & medically) in stem cell research, he will never see out of his right eye. However, his left eye vision is very good. He just needs to learn to adapt to this, which he is doing quite well. He is slightly near sighted in this eye and will be getting glasses on Wednesday to help make images a little clearer but mainly for safety purposes. He also now has a few computer exercises to help his visual cognition.

His week ended on a high note with a visit from his friends on Sunday and a brief picnic on the lawn. Friends are very important and he needs to see more of them on the weekends.

Dear Nick,

Im sorry I have not written you in a while. I have been in grad school since September, and it has been keeping very busy. The semester is almost ending. I think it is going to be a successful one. I am working toward my master’s in nursing, and I’m sure Kristin has mentioned, it is difficult. I absolutely love it though. My first set of clinicals were fantastic and Ive made some wonderful friends. Im also enjoying my life back up on the north shore. Im looking forward to seeing you again. I believe it has been a couple months since Ive seen you last, and from what I read and hear, you continue to move on upward. Keep up the good work. You are truely an inspiration, Nick. You have accomplished so much in the past several months. I think everyone can admit that life is challenging, confusing, and sometimes really sucks, but I guess that is what life is all about, and that is why we need people like you to look up to. I will see you really soon. Love, Courtney D.

Nick - Peter and I were in New Zealand when you had your accident. We were contacted by George and Chandler Woodland. At an email cafe, reading an email from George - we discovered that we were staying at the same hotel as Lucy and Peter. At the hotel we discovered that we were in the room right next-door. We learned all about you and what a wonderfull young man you are and spent time and enjoyed meals with Lucy and Peter. We are very impressed with your progress. It always seems slow when it’s “your” progress but you’ve come a long way. Keep up the good work. Our love to you, Lucy and Peter. Sally & Peter Blommer (Milwaukee WI)

Nicholas’ weeks now seem to be falling into a regular routine of hard work at his daily out-patient therapy program. His PT continues to work on core strengthening, balance in walking and stretching, and we are seeing positive results. OT and Speech are working on all his cognitive skills, which are much slower developing, as expected. He now has “homework” related to short term memory development and does very well in these exercises. As Nicholas’ visual impairments obviously affect his balance, ability to read, etc., we are have an appointment with a behavioral ophthalmologist to see if any improvement can be made in this area.

Hey Nick,

Hope all is well. I bumped into Sarge Goodchild this AM (have not seen him in 13 years since our days at Syracuse University and I am certain I have not seen you in at least 15 years so it has been a log time) He told me about your fall, but told me about your amazing progress and recovery. Keep up the good work. I have not seen your dad since the terrible 2 Pendleton brothers played hockey on our squirts hockey team so say hello to him as well. Keep up the good work. I am amazed by your story.

Jamie Pendleton.

Nicholas survived his first week of out-patient therapy in good order but quite tired. We already see the continued stimulation three hours a day, five days a week has had a positive effect on his endurance and mentally he appears to be a little more alert. We took him to his first movie, March of the Penguins, this afternoon. I don’t think I’ve seen him so relaxed and truly enjoying himself in our company.

Rather than fill this space with more words, I decided to add a new photo to the picture gallery, and it should give everyone an indication of how things are going “at home".

Nicholas had what appeared to be a short seizure at the beginning of the week and it took him a few days to get back in sync. Fortunately, I suppose, this happened just prior to his one month check-up with his neurologist at the Spaulding Rehabilitation Hospital, where Nicholas to the opportunity to visit the 8th Floor and was warmly welcomed by his nurse and therapists. Hugs all around! Right now we’re awaiting blood test and CT Scan results, but Nicholas appears to be more-or-less back to normal. Other than this, he cruised through his last week of “in-home” therapies. On Monday morning he starts out-patient therapy 3 hours a day, five days a week. This is the next phase of Nick’s Recovery. We’re sure he is ready to be “pushed” and feel this will have very positive results. He did spend 3 hours being evaluated at the out-patient facility on Thursday and appeared to be quite stimulated after the session. I’m looking forward to presenting some real progress reports in the weeks and months to come.

Although briefly, it was good to see the sun again and Nicholas took advantage of the decent weather spending as much time as possible outdoors. The most enjoyable moments seemed to be at the beach, sitting on a rock and quietly watching the sunset. Slow, steady progress continues.

actually could you send any pictures or notes to jonwoo@gmail.com way more space to hold all the cool photos and messages y’all are gonna send.

hey guys i’m going to try and put a photo album together for nick and am looking for some help. if you could send some pictures of yoursleves and appropriate photos with a little note for nick to jonwoo@wildmail.com that would be great. i’m gonna get them printed up and make an album of all his friends with personalized notes and pictures of his old world and his old self. write me with any suggesetions remarks or pictures. thanks.
Jonny Woodman

Hey people of Nick,

On the way to work this morning I heard a great piece on NPR about the return of (Hula) hooping. String Cheese Incident was featured prominently and the reporter attributed the return of the hoop largely to them! It was really good and I’m sure Nick would love to hear it and see some of the pictures, I know he’s quite close with some of those guys.

You can listen to the story and see some pictures at the WBUR website: Click here to access the story.

Will

Nicholas has had a rather unremarkable week, due to a mild head cold, with each day having its ups and downs. In spite of feeling under the weather, he has maintained a good weight. We have witnessed the continuing emergence of Nicholas taking some solid initiative in a few situations plus indications that some of his old habits are surfacing. If you really want to get the essence of what is happening in Nick’s Recovery, be sure to read Will’s “Long Walk on a Short Pier”, posted earlier this week. It speaks volumes.

Hi everyone,

On Wednesday Nick and I went for a ride to check out the surf; the wind had been blowing and the waves were quite big so I swung by the house and picked him up. Nick climbed into my car, grabbed the seatbelt, secured it, and looked over at me. “Alright man, we’re out of here.” I said. Nick’s reaction was priceless; he looked over toward Peter and Lucy and then back at me and asked “Are they really letting us go?” “Hell yea, let’s get out of here!” I exclaimed, turning up the music. Nick started laughing and was pretty excited to get out of the house. In the car we talked a bit, I asked him how he was feeling and he told me that he’s doing better. I told him that he’s better everytime I see him and that he looks great, “Thanks.” he replied.

We drove down to Magnolia Harbor; a friend of ours, Nick T, had told me about a potential surfing spot there when the waves are big and the tide is right, so Nick and I went to find this elusive break. We pulled over and I said “Let’s get out of the car and check this out.” Nick took off his seatbelt and popped the door open. I had to run around the car to get to him before he got to his feet, for his balance is still off a bit. I got there in time, Nick stood up and we walked slowly and carefully out onto the pier. We looked around for a good surfing wave but saw nothing; I said “Maybe he means that break there.” and pointed to a place where the waves were standing up pretty well. We both watched and then, as the water peeled back at the approach of the wave, a large collection of boulders were revealed and the wave slammed down on top of them. Nick started laughing and laughing, undoubtedly picturing me attempting to ride that wave and having a less than optimal finish. He pointed at the wave and said something I couldn’t quite catch, but was very much in the moment. I wasn’t sure how well he could see what we were looking at so I pointed at a dinghy floating close by and said “Can you see that?” “Yes.” was his reply. “What is it?” I queried. “A boat.”

We hung out and chatted a bit, I told him not to jump, that I’d have a hard time explaining that one to his family; he got a kick out of that too. We then headed back to the house, Nick had an appointment at 5pm, but drove around the shore a bit first. It was great to interact with him in an environment we’ve shared before and will, undoubtedly, share again.

Will

just read about your getting your room fixed up with all the pictures from your apartment having all your things around you ” a good thing” rain rain and more rain if you were in colorado you’d be pushing snow almost 18 inches in denver very proud of you nic! hugs and love ole grams

Nicholas seems to be adjusting very well to his new surroundings and is expressing opinions on almost any & every subject when asked. We spent a good ½ hour hanging his pictures from his old apartment in his bedroom with particular attention paid to the height & wall location of each. This is vintage Nicholas & good to witness. He is also beginning to initiate more, much to our satisfaction and concern. He feels he should be able to do certain things on his own and, if we happen to turn our back for an instant, he will very quietly get up and start walking someplace. It’s going to be sometime before he’s balanced and strong enough to be able to do this without assistance. However, it’s a very good sign that he’s trying to take control. He is now pretty much scheduled for the three basic therapies 3 days a week and we’re making arrangements for a massage at least once a week. Weekends continue to be down-time with opportunities for his friends to visit and witness his progress first hand. I’m sure he’d enjoy the chance of seeing faces other than ours, sharing in conversations other than with us and the added stimulation would be excellent therapy.

Nicholas’ was indeed discharged from Spaulding Rehabilitation Hospital on Wednesday amidst tears from some and best wished from all. Although we miss “the team” at Spaulding and all their hard work and dedication to Nicholas’ recovery, it’s great to have him living with us. He seems to have settled in without a hitch. It’s going to take him a little time to adjust to his new surroundings, so we have tried to keep the past few days as simple and restful as possible for him. However, he has already had initial evaluations from a nurse, speech, occupational and physical therapists, all of whom will be coming to the house on a regular basis for in-home therapies. He has also had an initial physical by his primary care physician. There’s no doubt it is hard work from him and us but we anticipate life around the house with smooth-out in the next few weeks. Nicholas even in his limited capacity is a wonderful to have around. We wouldn’t have it any other way and eagerly look forward to watching and actively participating in his recovery and progress.

Nick,

I am so glad that you’ll be heading back to the infamous MBTS to live with your family. I am sure you are excited to leave the hospital, with all it’s strange and interesting odors, and eat nice home cooked meals again. I remember the day I left the hospital as being one of the more shining moments in my recovery. I’ll never forget walking out the doors on my own and bidding adieu to all the saintly doctors and therapists that helped me. My Dad took me golfing the next day - which was pretty hilarious to see as my balance was still off kilter and I lost about 25 balls (when I hit them - which was rare). I got to drive the cart though, which probably wasn’t that great of an idea (thanks, Dad.)

So, the day has finally come and I am moving to LA to forward my career in music management/artist development and (gasp!) look for a “real” job at an agency. This running your own biz is pretty difficult - so I’ve decided to pare down my client and booking workload and just concentrate on managing a few artists. I really miss you, man, and it is hard for me to make all these new changes in my life without consulting my good friend. Life has not been the same for me or anyone else close to you since your accident (duh), but I know that you will make a full recovery and be up to your old tricks once again.

I will hopefully be back in Beantown sometime in the Fall (and definitely Xmas), and can’t wait to hang out with you again. Don’t hesitate to pick up your guitar now and again, as I remember I had mine in the hospital and it helped me tremendously with my recovery process (although I still suck at it). We will jam in Nahant once again - No Doctors will live on in infamy (but I recently found out that some SF band stole the name - we should’ve copyrighted it).

Remember that this is just a bump in the road of life (I should write greeting cards) and this experience will only strengthen your character and resolve. You were kept here on Earth for a reason - always remember that - you are destined to do great things.

Stay cool, my brother.

Peace, Love and Neural Connections -

Baird

we all are very excited to know you are heading to Manchester By The Sea just the sounds of that bring the smell of the sea air and that beautiful view you will be enjoying…what a welcome change you have been such a brave warrior..cheers to you nic! you are in my htoughts much love and hugs “ole grams”

2 ½ days and counting with fingers crossed nothing happens that would postpone Nicholas’ discharge from the Spaulding Rehabilitation Hospital on Wednesday. The entire family is a little anxious, anticipating what’s to come, and extremely optimistic this will be a very positive experience, as a new chapter is about to begin in Nick’s Recovery.

Just as a word of caution, just because Nicholas is coming to live with us, does not mean he has recovered to such a point he’s able to take care of himself. He is at about the same level he was 3 weeks ago. He has reached a plateau. One of the reasons he is being discharged is to expose him to a new environment which should present him with an added stimulus and re-motivate him.

As I mentioned last week, Nicholas’ friends are a very important part of his therapy. Don’t be strangers to our house.

We had a meeting with Nicholas’ treatment team on Wednesday and it was decided that in his best interest the best course of action for his continued recovery was to discharge him from the Spaulding Rehab Hospital to come and live with us. Assuming there will be no set backs, his discharge date are set for September 28th. Once here, he will have a transitional period of about a month to acclimate to his new environment, which has to be a positive change, and will undergo “in home” therapies. Following this period, he will do out-patient therapies, most likely at a facility in Medford that specializes in neurological recovery. All of us are very much looking forward to this next phase in “Nick’s Recovery” and encourage any and all of you to come and visit. Time with friends is of the utmost importance and the best therapy I know. Our door is open 24/7.

In a different vein, Nicholas observed the Earthdance Event on Saturday at 7:00pm Eastern Daylight Time by holding our hands and reciting the prayer for World Peace & Healing:

We are one global family
All colors, All races
One world united.
We dance for peace and the healing of our planet Earth
Peace for all nations.
Peace for our communities.
And peace within ourselves.
As we join all dance floors across the world,
let us connect heart to heart.
Through our diversity we recognize Unity.
Through our compassion we recognize Peace.
Our love is the power to transform our world
Let us send it out
NOW…

It was good therapy, probably for both Nicholas and us, to get away for a week for the first time since the accident. However, we did miss him dearly. Not much happened of real interest this week. The sense from the family and his treatment team is that he’s hit a plateau after making great progress for the past 6 months. Nicholas does seem a little “flat” and doesn’t appear to have any infections. So, now we have to decide what to do to stimulate him. It appears that the best solution might be to change his environment, which means he’ll be coming to live with us in the very near future and continue his therapies on an out-patient basis. We will know more after a meeting this Wednesday with his team to discuss discharge possibilities, expectations, evaluations, etc.

Dear Nick,
I just got back from MEDUGORJE in Bosnia. It is an incredible holy place with lots of faith,hope and healing. I prayed for your continued healing and had a mass said for your intentions. God Bless.Jakie

We have been away all week and having nothing really to post except the reports from the rest of the family on Nicholas’ continued progress were good. It was great to be back with him today after our longest absence since the accident.

hi nic ole grams here thinking about you today as i watched varioius activites here on the “neck” a cigerette boat bombed down the canal nearly jarring the pictures off the wall of my hse..you would have been intersted in seein g the “rooster tail” it left in it’s wake at first i thought it osunded like thunder i do hope they arrived at wherever they were going at that rate of speed it did not take them long hurry and get down here soon much love and hugs “ole grams” xxxx

As I’ll be away for a week, starting this Saturday, I’m departing from my normal Sunday posting. Be assured Nicholas will be well-attended & entertained by his family and friends. His frustrations and annoyances continue to be a very positive indication of increased cognition, as evidenced by an analogous phrase he used the other day when referring to his struggle to connect his neurons, dendrites and axons: “The trick’s to find where the plug is.”

how wonderful to see you yesterday having lunch on the big porch w/so many of your friends….you are making such great strides the hard work you are putting into everything you do is very impressive shows all of us your determination to “get on with it” we all are cheering you on!! CHEERS! hugs and much love ole grams

Dear Nickolas,
The Partridge family rally enjoyed our picnic lunch with you and your family last Sat. at Briar Hill. It was a typical lazy day on the Cape with lots of people and lots of dogs milling around the porch. We were all very pleased to see your continuing progress, especially with your walking, eating, and talking, and we could tell how happy you were to be at one of your favorite places. Lucy took some special photos of you meeting Gus, the newest member of our family ( Heather’s 5 week old son), and you seemed to “connect” with him right away……fun to see!
Keep up the good work, and we look forward to seeing you at the Cape or Manchester or Spaulding soon.
The Partridges

Nicholas continues to advance in his physical and cognitive skills. He definitely prefers walking over using his wheelchair and is getting stronger and better at it daily. Cognitively he’s almost demanding explanations of everything nurses and therapists are doing. For instance, when his night nurse handed him his evening meds tonight and asked him to swallow them, he rather curtly asked her what they were. Once she gave him the names and what they were for, satisfied, he swallowed them with no complaints.

As Nicholas is getting closer to a yet to be determined discharge date and in preparation, we interviewed two out-patient therapy facilities, specializing in neuro care. We are also making every effort to take him away from the hospital environment on weekends in order for him, as well as us, to get used to new surroundings and circumstances. We took a day trip to Cape Cod on Saturday and home on Sunday. Take a look at the photo I just posted to the gallery for some of Sunday’s fun.

a bit of news you may find interesting Block Island is holding their very first amateur film festival this week next year i expect you’ll be there…..love and hugs grams

hi again i seem to be having a problem with my ability to get through to you i have sent you one message hopefully it arrived will keep trying love and hugs ole grams

hi nic i hear you are doing so well you are planning a trip to the “neck” we will be waiting for you w/bells on…when you drive in the drive be on the lookout for a little mother fox with two young one i think they live under the barn, sems the tennis court their favorite place to play in the late afternoon hope they are avialable for you when you arrive see you soon much love and hugs ole grams

HI N,
Well we spoke a couple of days ago, but since others are posting from the wild wild west, I thought I’d send some proper mountain vibes from Colorado. I’ve been in Winter Park for the past few days and am currently in a parking lot taking advantage of free wireless internet (no need to be doing this other than the fact that it’s here and free). We just drove thru Rocky Mountain National Park (elev 12,183) and are slowly making our way to Devner to fly home tonight. I’ll miss the mountains and the big sky. I’ve been sending you all kinds of energy from out here. I’m looking forward to a run tomorrow so I can use all this high altitude training to my advantage. We’re hanging out tomorrow night so I’ll be sure to pass on some of my extra O2 to you and we’ll go have a proper work out..sound good?!
See you tomorrow bro…
lovep

Well, helloooo there, Nicholas!

Mrs. Hesh here…checking in to see the comings and goings in your life. We are excited with your Dad’s weekly postings on your unreal progress. Go to it! We need you to be up and ready for a sail on KATANNAH sometime soon… (The Speedo is not operating on the boat and ONLY YOU (and that includes Manchester Marine) seem to be able to fix it…thirty years sailing with Steve, and we still very much need you to come aboard for a sail or a motor toot to deal with all of our electronic foibles.. Sigh. So, sound like a deal? Hurry up and let us know when you’re available? Until then, keep having fun doing what I cannot now and never COULD do on that windsurfer. Love, Linda (Steve, Kate and Susannah, too)

Hi Nicholas- I’m in Salt Lake City at the Outdoor Retailer Show buying for our store for next summer. All this outdoor stuff always makes me think of you. I saw your dad’s posting this morning and was delighted to see that you are fiddling around with the computer. And it does sound like you’re up to some of your old impish tricks.

Keep up the good work and progress- you’re doing a terrific job and must be a great source of pride for all your therapists!!!
Love- Julie (Adams)

Nicholas was caught again. As he continues to assert his desire to know exactly what is going on and who’s doing what with and to him, we are seeing more and more frustration, probably with himself more than others. The other day he tried to out smart the safety belt on his wheelchair (it can only be released from behind out of reach of the occupant) by wriggling under it. He was discovered with about 80% of his body out of the chair and when asked what he was doing, he said, “escaping”. Bravo! We love this initiative. He has taken a keen interest in just what the nurses and therapists are doing with him and why and asking very astute questions. He is also repeating instructions given to him to reinforce his understanding of situations. On Saturday, we took him for the second time to the house for a relaxing day away from the hospital. Unfortunately, with the lack of the usual cooling sea breeze, it was over 100 degrees outside and not much better in. Nicholas did not take well to the heat. He was happy to be in a relaxing environment but it wasn’t until we discovered the coolest place in the house was the garage and moved the “party” there that he seemed to perk-up. A picnic in a garage was a new experience for all of us.

As Nicholas is just beginning to explore using the computer with our assistance, I’d encourage any and everyone to post anything of interest to this web site.

It was another fairly quiet week with Nicholas working hard. Along with being in a lunch group 7 days a week to advance his social skills, he is now participating in a breakfast group, Monday through Friday. His physical therapists are very complimentary to the way he rises to every challenge they give him. We’re not surprised in the least. Nicholas very much enjoys his weekly therapeutic and cranial sacral massages, and we have decided to try schedule 2 per week. These are not within the scope of Spaulding’s program and are contracted independently, so we have to be sure they will not conflict with his normal schedule. One of the big pluses this week is seeing the development of a “temper” directed at those around him who are continually trying to help him. He’s definitely getting annoyed and wants to do things on his own. Unfortunately, for his own safety, he needs helping hands, so we have to get used to his outbursts. This behavior is a very good sign that he’s emerging cognitively.

Be sure to check the photo gallery for a picture of friends who dropped in last week.

Nicholas had a relatively quiet and uneventful week of steady improvement. His therapy team continues to be very pleased with his progress in all disciplines and always enjoy working with him, due to his personality, disposition and spirit of determination. Sadly for all of us we had to say “good by” to Rob, Daisy, Shane and Jacob. They have been wonderful company and therapy for Nicholas and we look forward to seeing them back here in October

A great deal happened this week for Nicholas. We’ve finally begun to see a temperamental side of him with obvious annoyance with those trying to help him in situations he’d rather work-out by himself. This is a very good sign of him trying to assert a certain amount of independence. It doesn’t happen that often and only at the end of the day, when he’s tired. He’s also beginning to express some very complicated, random thoughts. Without prompting he will talk about what he’s thinking, considering, contemplating, “images in his mind”, etc. and expressing himself in rather complex sentences with an extended vocabulary. He still needs to increase the volume of his voice to be understood, but he’s working on this. His walking has improved, especially with the use of a Lofstrand crutch. Thursday’s adaptive sports therapy had Nicholas out on the Charles again, windsurfing, followed by a spin on the tandem bicycle (he sits and peddles with his arms). The weekend included a visit by two members of the String Cheese Incident with thanks to Shane for making it happen. (Shane – Hope you found you’re way back to 93 South. Michael & Michael – Thanks for taking the time to be with Nicholas.). Today, Sunday, was a big day for all of us. We sprung Nicholas from Spaulding for the day, and it was spent at our house enjoying complete peace & quiet, good food, rest & relaxation, sea air & sun. Nicholas said he enjoyed it “immensely”. We’re looking forward to many more of these in the following weekends.

Nicholas remains medically stable and continues on the upswing through his therapies. His speech continues to improve, now that we don’t accept whispers & hand signals. The “tough love” approach is gradually working. Occupational therapy has taken on a new dimension this week to develop “social skills”, which we all know he has, by having Nicholas join a lunch group with other patients. He also had an adaptive sports session this week on a tandem bicycle.

We decided it was time to do a little something special for Nicholas to reward him for all his hard work and continued wonderful disposition, not to mention the therapeutic value, and on Wednesday he had his first massage, which he loved. This is now scheduled for every Wednesday. We are also taking him for rides in the car as much as we can to get him more acclimated to the almost overwhelming vestibular sensations, which he is tolerating better with each outing. Our goal is to get him to a point when he can endure the 40 minute drive to Manchester for a day “at home” where there is real peace and quiet, grass under his feet and clean sea air in his lungs. It should not be too much longer before this happens.

People of Nick,

I’ve just added 33 pictures to the photo gallery; take a look!

Love to all,
Will

These photographs are absolutely the best. Can’t help but make you smile! Go Nicholas and all who brought this one to fruition! xo, Mrs. Hesh

Wish I were there! Check out the gallery here.

P.S. Kristin added a gallery that eclipses mine. So if you haven’t seen her pics you may want to go back.

Progress continues with more talking and a more pronounced effort on Nicholas’ part to be heard and speak intelligent sentences. For example, the other day he was lying in bed, having woken-up from his nap, just kind of relaxing, and I asked him if he was thinking about anything in particular. He said to me in a clear sentence, “I’m thinking about the project or organizing food”. I then asked him if this meant he was hungry. To which he replied “yes”. Now, this is pure Nicholas. Never one to give a simple answer to a question. We no longer accept whispers or hand signals both of which he needs some reminding, and he’s beginning to resign himself to having to raise his voice volume a few decibels.

Nicholas now has 2 hours of “cooking class” every Friday as part of his occupational therapy. A step toward eventual independence. He’s also schedule for more adaptive sports (windsurfing or bicycle riding) this Friday and the following Thursday. The therapists really enjoy working with him. It was reported he was seen dancing in the gym this week with one of the therapist and drew quite a crowd.

I believe he’s now the senior patient in the longevity category and has his 9th roommate. Ryan is 19 and recovering from an automobile accident. He’s at the stage Nicholas was when he got out of the ICU in New Zealand with a family from New Hampshire having moved into accommodations in Wakefield. A familiar situation and we’re doing our best to provide them with some “New Zealand” love. We’ve also told Nicholas that he should try to help Ryan and be an inspiration to him, which he has acknowledged.

Anyone planning a visit this week be advised I will be out of cell contact all week; therefore, check-in Lucy, Kristin, Pamela or Deborah.

I echo all the sentiments of Pamela’s posting regarding Nick’s PicNick today. It was wonderful therapy for more than just Nicholas. When Lucy was saying good night to Nicholas and giving him a hug, he said to her, “Thank you, Dad, Kristin and Pamela for making today happen”. So, to everyone who was there today – Thank you and do it again and again………………

Thank you to the cast of characters who came out today to hang with Nicholas (especially Julia & Felix, the masterminds behind this operation). It was great to put all the faces to names and see the various crews assembled in one place. The music and the vibes were much appreciated by all and I know it l did wonders to raise Nicholas’ spirit and energy. Can’t wait to see the footage and get some of it up on the site. Until next time….
With love,
Pamela

Thank you to the cast of characters who came out today to hang with Nicholas (especially Julia & Felix, the masterminds behind this operation). It was great to put all the faces to names and see the various crews assembled in one place. The music and the vibes were much appreciated by all and I know it l did wonders to raise Nicholas’ spirit and energy. Can’t wait to see the footage and get some of it up on the site. Until next time….
With love,
Pamela

wonderful to see you nic surrounded by your harem, your expression is one of satisfaction ppictures say it all many thanks to pamela for posting and sheila for her expert photography…it was a great occasion for all of us nic to see you doing so well love ole gramsxxxx

Courtesy of Pamela:

This posting is being done earlier than normal, as we’re expecting a rather late evening out. There is very to report, which merely means Nicholas continues to make good progress in all therapeutic disciplines. He spent a couple of hours on the Charles earlier in the week doing his adaptive windsurfing thing and his appetite most times is insatiable. We took him out in the car again for a ride down Storrow Drive and a sort assisted walk around Harvard Stadium before returning to Spaulding. He enjoyed the peace & quiet of the empty stadium. However, he does find driving in a car tiring with all the visual stimulation but he is getting used to it. We will continue to take him out, making the drives longer each time to prepare him for the time when we can take him to Cape Cod, Andover and/or Manchester for the day. Tomorrow Nicholas will have a ring side seat from Spaulding to view the fireworks on the Charles and we plan to join him for the festivities. Happy Independence Day!

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)