Riley's Friends....Supporting the Cause

       

     Thank You "Navigator Method" for your support of Riley. 
        He is thrilled to know that friends are supporting him.

 

It Is Spring....I...AM...HERE

If you read the previous blog post, you'll know that we have been in a long drought waiting for a raindrop or two in our parched rain barrel. You'll also know that we view Riley's eventual recovery as a painfully slow process...one drop of water at a time!

We now have a few drops to report.....not a whole bucket of water into the rain barrel...but definitely a drop or two.

Riley had some encouraging words (whispered to me)  a couple of weeks ago....he said he can't completely explain it, but he feels he is slightly more "here".  He can't pinpoint exactly when his brain left but it seems to be a little bit back- he feels a bit more present instead of on auto pilot.
He feels as though his brain has been deep inside a cocoon and it is now peeking out a bit, and that he "is back"....in his body.
"Before I felt my body and my soul, but they were separated...far apart, but now they feel back together- connected....and now my thoughts are right there...right behind my eyes.  Before they were there but off in another universe....and I had to go so deep to access them.  I had thoughts but they were so distant.  Now they are right there...so close.""

He looked around the bedroom he has been in and said that the first 6 weeks he wasn't even aware of his surroundings but now is noticing what is in the room.

We view this "peeking out" of his brain as a tiny bit of encouraging news. Unfortunately what also comes with this increased mental awareness and reconnection back to his body, is the realization that he disconnected for a reason- in part, his brain "checked out" because the pain was (and still is) unbearable and unrelenting...the slight increase in brain function has not decreased any of his physical symptoms.

Riley has learned to go deep within his soul to deal with the incredible physical pain he endures every minute. He said, "Mom, I just want my brain back and to not be so startled by everything all the time...I hate being in this ultra sensitive state...it makes me want to stay a turtle in a shell and not come out because its too hard...but my lust for life is still there, as strong as ever...waiting in the shell while the storm goes on outside".
The overwhelming startle he feels from every movement and noise is still very intense, but if this would subside even slightly, he could imagine taking in the world again in very small bits.

In an email, a friend asked me to describe what we mean by "startle"...it's so hard to picture what this is actually like for Riley. An example:

From his bed when he opens his eyes, there is a set of sliding patio doors that look out on to a beautiful view of trees and the numerous birds that inhabit the garden. 
If he opens his eyes and unexpectedly sees the branches of the trees swaying in the wind or a bird flies past the glass doors...he says it feels like a tornado is swirling in his brain...and he begins to sweat, his eyes open wide as if being chased by an enemy, and he feels as if his head might explode.
If we move too quickly in the room, brush his skin when we come near, or he hears an unexpected noise...like the bedroom door, or a voice outside his room, he said it feels like he is being electrocuted.
This extreme sensitivity to sound and movement is one of the worst symptoms for Riley, as he normally is a very tolerant and easy going guy.He feels tortured by this and hates that the rest of us have to be so careful.
The trips to medical appointments are excrutiatingly difficult...the real world is swirling past and leaves him absolutely exhausted and depleted for several days after.

The treatment regimen for the babesia infection has been brutal. With this treatment comes a lot of emotional rawness (commonly reported by patients undergoing this treatment).  We have had many hard days swirling in emotional upset and physical pain. Sometimes I lay beside him most of the day trying to support him through this turmoil.  He wants to talk, but nothing makes sense, then everything makes sense but he loses his words completely, tears come, sweat comes and then physical exhaustion.

Together, Riley and I have been meditating on the words given to me by our dear friend Dale (who visited here recently)....I...AM...HERE. 
During Dale's visit I walked with him to a bench I discovered tucked into a hillside just minutes from our house. There he taught me a meditative prayer... reciting the words....I...AM...HERE.Through tears, anxiety and fretful breath, I could feel that.... I am here, God is here, Riley is here, all of you are here. I shared this meditation with Riley and together we have been reciting those precious and simple words...repeating them as a reminder of life and hope.

At some point every day Riley whispers to me, "I am here and I love you". I say to him daily "Riley you are here, YOU are not lyme disease, YOU are Riley.  You are here".



"I...AM....HERE"  bench  




View from the Bench

 

It is Spring...
Last week Riley woke up and on the commode(toilet) beside the bed...he gestured for me to come close so he could whisper something:
"Mom- its Spring."
We had been describing his illness as a very long winter, with signs of Spring hidden deeply beneath the surface. Together we were waiting for small signs of Spring...so I thought he was referring to that .I said- "You mean you feel Spring in your soul?"
"No it's Spring" he whispered."Yes Spring is coming Riley" I replied
"NO- today is the first day of Spring Mom- it is March 21st."  ""OH...of course" I humbly replied.
Riley counts the date off in his mind every day and he knew that it was Spring before I did! :)

BENCHES

Since our last blog several of you have emailed us your "favourite bench stories"...or told us of a bench you will soon visit and while there you will think of or pray for Riley. Keep sending us these stories...they have been inspirational.



A bench moment on hike near Canmore


Terry and Evan's March 26th visit

After over a month apart, I crawl carefully into bed with my dear Riley and without speaking I curl up beside him. He methodically places his hand over mine, and silently we lay together almost motionless for what feels like an hour. At one point he opens his hazel eyes a peep to acknowledge me and a hint of a smile graces his mouth. His eyes close and I listen to his labored breathing and watch as his eyelids begin to twitch involuntarily. I survey his beautiful face...the gentle curve of his chapped lips, his slender nose and the myriad of endearing features that were present at his birth and remain even in his infirmity. Tears wet my cheeks, my nose runs, and I pray for the return of his warm smile, infectious laughter, and enriching company.

Despite the fact that Riley is both weaker and in more pain than on my last visit, he also feels less vacant and more alive somehow. Riley seems more conscious and he has stated on several occasions "I am here".
I remind myself to see this as a sign of hope despite being witness to his continued weakness and suffering. Riley's neurological specialist has given him an exercise where he has to touch his thumb on each of his hands to each of the hands' fingertips, in succession, two times. I watch as he sweats with concentration and exertion to complete what should be a simple task...he succeeds but it takes almost two minutes to complete!

Fortunately Riley has a deep faith and a strength of character that will not be deterred by whatever is required of him to get better.

For those of you who tell us you feel impotent and at a loss to assist us in our struggle with Riley's illness, please be assured that your words, deeds, and prayers are at work. Christine has told me on more than one occasion, when Riley is at his worst, and she feels overwhelmed, alone, and distraught, the right words just come to her. Calm words, that soothe Riley and lift broken spirits. These are the words from all of you...whispered and spoken lovingly from places near and far.

Outside the window California has begun to burst with bluebird skies and temperatures in the high 20s. Flowers erupt and perfume fills the air. My brother Grant took Evan and I up Mt. Diablo where you can see for miles and we were able to soak in the beauty of Spring. Now we wait patiently and trust that more raindrops are on the way and that Riley's barrel will once again be filled. In the words of Bruce Cockburn: "...So how come history takes such a long, long time,
When you're waiting for a miracle..."





In the capable care of Terry and an IV nurse....Christine and Evan escape to the beach for a few hours....Riley is in our every breath as we write him a note in the sand




Evan waving to the Paparazzi



EAT...LOVE...PRAY...INFUSE

EAT  LOVE  PRAY….INFUSE

 Our life in California is a daily ritual of these four things…hanging onto hope that each movement is a small step towards restored health and vitality for our dear boy.



 EAT…pureed organic veggies, chicken broth,  smoothies and soups to make sure Riley is getting good nutrients, and enough calories to sustain him…2800 calories per day…one Dixie cup at a time.



Riley's Organic, Veggie 1700 Calorie Smoothies



PRAY…every movement, every breath, every gesture between us, is a form of prayer…praying for strength, for hope, for progress.



Grandpa Moon sharing a moment with Riley before heading back to Canada



LOVE….tapping into the love that surrounds us and feeling grateful for the many, many ways it is showing up...knowing that it is all we can hang onto.



Great Big San Fransisco heart in Union Square...beckoning us to feel the Love



INFUSE…IVs drips all day, everyday…sometimes off and on for 6-8 hours of the day….infusing antibiotics, amino acids, and hydration…along with an endless array of oral medications and supplements.



Riley's IV drip...tucked in bed with Valentine Balloon



  __________________________________________

This blog entry is long overdue…my apologies to all of you who have been asking for an update on our life in California and Riley’s condition.

As you can see above-Riley's care is a round the clock combination of eat, love, pray and infuse...leaving very little time to make phone calls, send emails or update the blog. 

I have also been without words…unusual for me…as most of you know I like to talk and find it therapeutic to write.

This experience seems to defy description. This disease is hideous and words cannot really describe it or what we are experiencing.

I have been waiting for the right words to come to me and wishing that they could include a description of a dramatic shift in Riley’s condition.

Unfortunately dramatic shift is not what we’re getting…instead we are in for a much longer and more complicated haul than we first anticipated.

“Quick Fix” went out the window months ago, along with the lack of knowledge and recognition of Lyme disease in our Canadian health care system.

The Lyme and co-infection “bugs” are putting up a good fight, and continue to wreak havoc, doing the most damage in his brain and central nervous system.

The doctor has described to us that the debilitating neurological symptoms are in part due to the bugs invading his brain, but also due to his body’s fight to deal with the storm caused by the die-off of these bugs when killed by the antibiotic treatment.  Cytokines, antibodies, encephalopathy, inflammation….medical terms we are becoming very familiar with.

Riley appears to be in a sub-group of Lyme sufferers who have a much more difficult time dealing with the massive die-off of organisms brought on by treatment, as well as he has a significant number of complicating factors- including co-infections (Bartonella and Babesia) that are making it much more difficult and longer to treat.

Dr. H. has described to us that Riley’s body has essentially gone into “shock” (shut down), in an effort to deal with the trauma of the invading organisms and also the massive die-off from the antibiotic treatment.  The brain and other organs are in survival mode and is in part what is causing the extreme level of debilitation.

So- the line of treatment is not as simple as, “just give him antibiotics, kill the bugs and then he will be fine”.  It is a cat and mouse game trying to figure out how to kill the several forms of the Lyme bacteria, as well as the Babesia and Bartonella, while also supporting his organs and immune system to help him heal.

The doctors remain cautiously optimistic that Riley can and will make a full recovery, but are having to take a much slower and cautious pace with everything in order to keep his body functions stable and help him "detox" successfully from the treatment.

They have seen this level of illness before, as well as this kind of reaction to treatment, but did not fully expect this with Riley based on his young age, his prior good health and the relatively short time he had been sick prior to diagnosis (seemed long to us but many people suffering with Lyme disease go for years before getting properly diagnosed).

The doctors are very glad that we are down here and have been seeing Riley every 10 days- sometimes at the clinic and sometimes making house calls.

We have also been referred to several other health practitioners who specialize in Lyme treatment and are providing adjunct therapies to support Riley’s recovery.

Coming up in the next few days we will be making the one hour trek into downtown San Francisco to see a neurological therapist.  He has worked with many patients suffering from neurological Lyme disease and in a phone consultation this past week; he described the importance of doing neural therapy with Riley to support brain function while he is undergoing treatment to kill the bugs. 

We are tapping into every resource possible and are very thankful

for the expertise and knowledge of the medical team here. 

     

A little window into how Riley is coping with all of this and what he has to say (whisper)…

When telling Riley that we would be travelling to San Fransisco this coming week to see a neurological therapist, I explained that the doctor would be finding ways to support his brain function while undergoing all the treatment to get rid of the bugs.  I mentioned that the doctor would be wanting to know what is going on cognitively and asked Riley to explain how he would describe what’s going on in his head….here is some of what he had to say:

“Mom…. I can still read when you write me notes and hold them up for me to see…it just takes longer and it is so hard for me to form the words to respond-partly because I can’t get out what my mind is thinking and partly because my tongue and mouth aren’t working. Also, I just feel too weak to use my voice.  I also find it so hard to keep a train of thought going.  I get started talking and can't find the words and then all of a sudden I don't even remember what I was trying to say...but there a million thoughts going around in my head constantly.

I am thinking all the time…I have some rituals. When I first wake up in the morning, I tell myself what day and month it is…I don’t want to lose track of time.

After my shower…I do math in my head.  Then sometimes I take words, phrases and practice translating them from English to French”.

“I think my brain is like a rubrics cube.  The pieces are all there but they are jumbled right now…and getting everything to work again is a big complicated puzzle…but one day all the work will pay off and the rubrics cube will be perfectly in order once again”.

During another conversation when Riley was overcome with tears and feeling very weary from all of this….he said, “Mom, I just want a moment with you when its not silent between us and all we are doing is just getting through the meds and the pain…what I would like most is to be able to just sit on a bench with you and talk and watch the clouds go by.”

After that comment, I reminded him of all the benches we have sat on over the years…we started naming some of them. 

Now- one of our daily rituals is to each pick a bench to go to in our minds…and at some point during the day he tells me what bench he has gone to and I do the same…here are some of the benches he has mentioned:



Relaxing after a backpacking trip in the Dolomites- Italy



One of many hockey benches he has sat on...this one in Sweden



Eating Gelato in Rome



Bellhouse Park on Galiano Island....one of Riley's favourite places



______________________________________________

Are we surviving all of this?

Somehow, one breath at a time.

Can I imagine going on like this for many days, weeks, months to come?

NO!  
The agony from our family being separated is very difficult for all of us.  However, I am trying to practice the skill of truly being in the moment- because if I look too far forward, I get completely overcome by anxiety, worry and sadness.

 

We are doing what one friend described to me in an email as:

“Biting Down on the Handlebars”…a metaphor from bike racing when the athlete has hit the wall and still has a long uphill ahead.

We still have a long uphill ahead and the twists and turns on the road have not been easy, expected or smooth sailing…but we’re stubbornly “biting down on the handlebars” and hanging on for dear life!!! We feel completely numb and depleted some days and really can't believe that Riley continues to suffer with such intensity.  I am hanging on, but somedays we are not really sure how we can sustain this...but there is no giving up- Riley is still in there and waiting, waiting to get back to life.

The progress is going to be slow and undetectable at first. I am seeing Riley’s healing as one drop of water at a time into the big rain barrel called health....one drop is not even noticeable...but one day...one day that barrel will receive the drop that overflows the barrel and then we will see how far we've come and will be able to say, "Our cup runneth over."

Please, please let the drops be filling the barrel- even if we can't see them just yet!!

We continue to be so thankful for everyone's support through this very LONG ordeal.

Terry's reflections on last trip to California:
 

Evan and I boarded the plane for a much anticipated trip back to California. Through the generosity of friends and family we navigated our way awkwardly through a month of school and work while Christine heroically cared for Riley south of the border. I closed my eyes on the flight and a stream of memories washed over me: Riley as a curly blonde-haired child at China Beach…digging in the silky sand, Riley smiling as I struggle to catch him skating under the moonlight in Bowness Park, Riley laughing with his dear friends Ellen and Harrison after a grueling climb in the Dolomites. My memory centre skews itself towards images of him that radiate joy, contentment and robust health. Every fiber of my being rejects the fact that Riley is now a frail 17 year old unable to shower, eat, sit up, or use the washroom without assistance.

Although purely coincidental, fog and icy San Francisco drizzle set the tone for much of our second visit. Fortunately my cousin Joanne and her husband Sam’s hospitality provided a welcome respite for two weary, chilled travelers. Their spacious Walnut Creek home is a brightly lit sanctuary where flocks of colorful birds and slothful squirrels compete for seeds and shelled peanuts. Terraced gardens, rosemary hedges, flowering trees, and rolling hills as far as the eye can see.

Sam aptly described Christine as the “Mother Theresa of Mothers”…months of grueling, around-the-clock care…administering medications, feeding Riley by Dixie cup, shaving him, showering him, brushing his teeth, shuttling him to doctor’s appointments, supporting him as he shuffles to the washroom, lying with him for hours to soothe his startle reflex…all with too few signs of improvement.  Despite the expert medical care he is receiving, Riley remains incredibly weak and he struggles just to endure the minutes in each passing day. In the stillness of his bed, he prays and visualizes himself gaining strength and returning to the people and pastimes dear to his heart.

We now communicate with Riley predominantly through short messages written on a white board: “Do you need the washroom?”…”We are so proud of you” … “One day this nightmare will be over!” Unfortunately much of the time he is too weak to respond and this creates an unfamiliar barrier. Riley has endless thoughts trapped inside that he cannot fully express. One night he stretched himself to let his brother know how he felt about Evan’s recent musical achievements. Using two words and a pause, Riley expended the last of his days’ energy whispering: “I am…so proud… of you…I miss… you so… much.” Such few words, but each one a precious gift that Evan pocketed and carried home with him as we left Christine and Riley to fly with heavy hearts back to Calgary.







Bellhouse Park on Galiano Island....one of Riley's favourite places



He has been on treatment for Bartonella for the past 3 months and we have seen a slight decrease in Bartonella symptoms...unfortunately they are not the symptoms causing the most debilitation...but we'll take it. 

He has for the time being stopped the medications to treat the Bartonella (not done with it forever but for now) in order to start treatment for the Babesia. Dr. H. believes that the untreated Babesia may be getting in the way of Riley's progress..  He started this treatment 6 days ago and the past 48 hours have been very, very hard- with die-off symptoms raging (see previous blog describing "herxheimer" reaction).  I spent 7 hours beside him in bed today as he had fevers, chills, chest pain, shaking, head twitches and lots of crying and emotion...all typical Babesia symptoms.  The treatment is definitely stirring things up and we hope killing bugs.  Babesia is actually a malaria-like parasitic disease and has been called "Lyme's Cruel Cousin".

JETTING TO CALIFORNIA

Jetting to California

Travelling by private jet to California was a gift beyond measure. We were able to drive Riley right up to the plane without the chaos and startle-evoking noise of the airport terminal. The jet also flew faster than a commercial airliner and travelled at a  higher altitude; avoiding the turbulence found at lower elevations.

 

 Lear 35 getting ready for take-off  





Evan co-piloting



My cousin and her husband have graciously opened their spacious “Tuscany” style home and given Riley a quiet room with a view of lush rolling hills carpeted with grapevines, orange trees and lofty oak and cedars.



Riley's Room on main floor (right)    



We took Evan along with us to see where his brother and mother would be staying and my mother also came to lend a hand. We are fortunate as well to have my brother and his girlfriend living nearby. They have been tremendously supportive. 

The day after our arrival Riley met with both of his doctors. It quickly became apparent that our trip to California was critical.   Despite frequent phone consults, the medical team seemed shocked by how ill Riley had become in the last few months and let us know that it may take over 6 months for him to truly begin to feel improvement-devastating news.

Fortunately, their expertise with the complexities of Lyme disease had them suggesting a number of medical options and local resources.

It was extremely difficult for Riley to adjust to his new surroundings and we had a number of brutal evenings where his level of anxiety, nausea, and discomfort rose to new levels.  One night it took three of us to get him to the washroom and he described “demon eyes” telling him he was not trying hard enough and would never get well. Listening to Riley’s fear of not having the strength to continue the battle (at one point he stated that he wanted to die) was one of our lowest moments to date. 



Evan having a moment with Riley



Last Sunday the time came for us to leave Riley and Christine in California and return to school and work.  Words cannot begin to describe the level of sadness surrounding our departure.  We knelt beside Riley’s bed while he painfully draped an arm around each of us. Slowly and tearfully he raised his hand to his heart space and Evan and I returned his tender gesture. It is counter-intuitive to leave your sick child behind...something akin to being told you cannot enter a burning building where your son remains trapped. So with heavy hearts Evan and I left for the airport.

We arrived back in Calgary late that evening to discover that friends had left Evan and I food and words of encouragement...something to take the chill off our otherwise cold and vacant home. Christine also informed us that evening that one of Riley’s medications had been changed and his evening had been better; lower anxiety and startle.

For now, our family photo has been torn in two rough pieces...Christine and Riley in the U.S. for an undefined period of time, and Evan and I left in Calgary to return to the new “normal”.  Yesterday I awoke to this poignant e-mail from a friend:

“I rise...I stretch...I wash...I dress...I sip...I stress...I think...

And I hear a voice, I don’t know whose, from where, in the dark that I try to push through this morning, reminding me of this desperate soul making gasps in California and his mother and father and brother whom I have know so long, whose lives are something completely different today than any I could have ever imagined only a year ago.

Sadness...Brokenness...Nonsense...Ridiculous...Evil...Anger...Tears pouring...

Ouch—deep, long, defeated, aching of rage.

PLEASE PLEASE PLEASE COME BACK RILEY!! I NEED YOU! WE NEED YOU! WHY IS THIS HAPPENING? STOP!”

Yes it is true that we need Riley to turn a corner and to witness a lessening of his symptoms! Until such time we continue to marvel at the outpouring of support we have received. So many compassionate and generous acts...reminders that despite worldly forecasts of doom and gloom, generosity and kindness continue to be alive and well!

Gratefully, Terry

Taking turns having a few moments of fun and exploring our new surroundings:

 

Evan with Grandma Lindberg and Elaine



An Afternoon Exploring San Fransisco     



Leaving on a Jet Plane

Just a quick update:
We have finalized plans and are flying to California at noon today- Wednesday, January 19th.

Through the concern, prayer, big heartedness, and generous efforts of a dear friend...several people (known and unkown by us) very kindly came together to provide the finances to fly Riley by private charter.

This is absolutely amazing and such a gift.  We were very concerned about Riley navigating the airport with all the noises, wait times and hustle and bustle-the private charter will allow us to avoid all of this and fly directly to Oakland- the nearest spot to our destination.
Riley is equipped with custom earplugs, sound blocking headphones and will receive door to door service.

The four of us are going, as well as Terry's brother and mother.  Terry's brother Grant lives down there and will be a great help as we settle in.
We will be staying with Terry's cousin and husband (nurse practioner and ER doc-hurray!)....they are opening their home to us and we are so grateful.
The plan is that Christine and Riley will stay there for an extended period of time...to allow face to face support from the LYME medical team there.
Evan and Terry will return to Calgary on Sunday, January 23rd.

We will keep in touch through this blog.  Thank you everyone for sticking by us through all of this.

"Hope begins in the dark, the stubborn hope that if you just show up and try to do the right thing, the dawn will come. You wait and watch and never give up".

On a Lighter Note

While out for a frigid winter run beside the Bow River on the weekend, a salmon coloured band suddenly unfurled itself across the bleak skyline.  Instantly my mood lightened and I remembered a humorous incident with Riley.

I was home alone administering his evening medication and assisting him to use the washroom. With all the energy he could muster, a word or two at a time, Riley let me know that if it was not too much trouble, he wanted to take his medication in bed and then have me help him to the washroom and provide him with a hot washcloth there for his face. I let him know I understood completely and proceeded to carefully measure out his medication. I placed the medication in the washroom along with the warm washcloth before tip-toeing back to his bedside. Riley’s forlorn expression upon my return said it all...he was unable to speak so I spoke for him:  “Listen dumb arse, I am barely able to function here and you cannot seem to follow a simple set of instructions!” Riley’s mouth formed a painful half smile, a tear rolled down his cheek and we did everything we could to contain our laughter to avoid startling him.

I am thankful for these moments of levity that break the tension, and like the lightening of the sky, tease hope out from its’ hiding place.

Mr. “Dumb Arse” Lindberg

Happy New Year...Let It Be So!!

Happy New Year to you all! Time to turn the dial on your “etch a sketch” and make way for the adventure and promise of a New Year. Last night Riley whispered to me that he was viewing 2011 as the year of his renewal. I continue to be amazed at his ability to hold on to hope despite the severity of his suffering.
We’d love to tell you that Riley is feeling considerably better and that our life as a family has returned to a kind of normalcy. In reality he continues to bravely endure each passing day with little sign of improvement and a heart-breaking set of debilitating symptoms. Over the holidays Riley developed constant finger tremors; leaving him unable to hold a cup or spoon and feeling continuously startled and trapped in his body. We now have to purée his food and pour it into his mouth using a Dixie cup, shave him, and brush his teeth. In consultation with his medical team we chose to take a momentary break from the IV antibiotics last week after a frightening evening where Riley’s blood pressure/pulse roller-coasted erratically and he described himself as completely detached from his body. As of today he has started back on a revised, less intense antibiotic regimen and we will see how he manages. 
Although I cannot recall the song containing the lyrics, the expression “dog-shit tired” captures some of the collective feeling in our household. A bone-weariness has set in…as if someone threw us in a burlap sack and hit us with hammers all night long. An unfamiliar irritability pokes at us and grief curls us up in a ball. Still we forge ahead.
What is it that sustains us?  Alongside faith, humor, and Riley’s courage in the face of suffering, we are nourished by an amazing community of care. I have come to define HOPE as the: Hearts of People Everywhere. We continue to be overwhelmed and humbled by the profound outpouring of support we have received: borders crossed and individuals coming together to provide financial support for Riley’s treatment, Christmas lights strung up outside Riley’s window, a neighbor offering us the use of their home, errands run graciously, meals on the doorstep including Christmas dinner, family and caregivers’ home visits (giving us a much needed break), invitations extended to Evan to leave our home for an adventure, air miles, prayers, e-mails, and numerous phone-calls of encouragement. 
May the year to come fill you with a rich set of memories and indeed be Riley’s year of renewal! 
With tremendous gratitude, Terry


A note from Christine:
OK…so Christmas was a bit tricky to say the least…the neurological symptoms for Riley include being terribly startled by sound, quick movements, or touch. His senses are in overdrive (BIG TIME)…so we tiptoe around the house, and are constantly “shushing” one another.
How do you open presents in silence?  Not an easy task. The Hammond family saved Xmas morning. They lent us their beautifully sewn, environmentally friendly, cloth bags… totally silent to unwrap (no tape, bows or cutting necessary).  BRILLIANT!!  Riley sat up valiantly all morning by the tree receiving his IV meds while we opened gifts.
Evan opened Riley’s stocking for him and Riley’s eyes got big in wonder and gratitude…he could not smile because of the facial paralysis so his eyes did the talking.
Evan and I decided we should write into the Guinness Book of World Records to see if we qualify for the “Most Silent Xmas Celebration Ever”!

Steps Ahead:
Riley’s condition has not turned the corner like we had all hoped and the doctors in California really want to see him face to face in order to better respond to his medical needs. We are grateful for the care from Dr. J, Dr. T and nurses locally, however feel that consultation with the team in California is much needed at this time. We are making plans to take Riley there within the next couple of weeks. With wheelchair, earplugs and airline assistance hopefully the trip will be uneventful.  We will keep you updated as plans are finalized.

Riley asked me to pass on his thanks for so much care and support.  We tell him daily about emails, notes, meals etc.  He is so grateful and tender towards all of you.  He misses his friends, school, hockey, outdoor skating, skiing, driving, texting, hanging out with Evan and so many other things! 
He never gives up hope- and when I asked him how he occupies his thoughts day after day in the prison of his body- he whispered, “Mom, I have a million memories to focus on and I walk through every detail of them in my mind.  I also think about all the things I have to look forward to-I am very ill but I’m not down.”

From Riley and all of us…Thank you for sticking by us!