Hamiltons of Phoenix

Family Camping Trip - June 2010

2010-06-08T06:08:00.000-07:00

We just spent a wonderful week camping beachside in Carpinteria, California. We just love that place! Chilly weather and water was a welcome change for us desert dwellers. The kids enjoyed the beach during the day and we spent every evening by the campfire making and eating way too many smores :) Friends the Sanders Family from Phoenix spend a month in a condo in Carpinteria and they came by for a campfire visit.

We were at this same place three years ago...."before encephalitis". It brought back memories of how when we first arrived Will raced out of the car, running to the beach. These thoughts can leave you feeling a bit sad, but when you turn your attention to what he is doing NOW - he was so happy, in the water, sand castle building, enjoying milkshakes for dinner, endless hours of board games..... The run to the beach still happens, but with mom, dad, or Paige holding him up for balance. So a team effort this year.

It's Been How Long???

2010-05-17T15:00:00.000-07:00

Wow, I can't believe that it has been almost six months since we last posted. I guess my borderline obsessive visits to Facebook have me feeling like I am updating everyone. So here and now I make a commitment to keep this blog updated. Why? Well...people keep asking me about it and I guess I didn't realize that there are still people checking in on our family. So here is a quick update...Promise photos soon.

Our Family: Has been busy busy busy. Craig has finished up another cycling race season as a member of the AZ Masters Cycling Team. A great group of people who come with awesome family members too. We enjoyed weekend trips to Bisbee and Tucson to watch him race. I think he is as fit now as he has ever been.

Paige had a very successful school year and will "graduate" from grade 8 next Wednesday at her school promotion ceremony. Our little girl is off to high school next year. Not a high school Ike we are used to in little old Victoria...a BIG high school with about 2,000 students. Her school softball team won the district championship and finished second in the State.

William is still working hard at becoming independent. We are at the 2 year mark now (which is incredible). Many "experts" believe that once you hit two years after an injury to the brain - even viral - that is pretty much as far as you are going to go. Well, we don't believe that and neither does Will. This year he attended school full time in the regular classroom, ably assisted by two amazing women who are his "aides". He also received therapy at school - PT, Speech and OT. The school, teachers, staff, therapists, students - everyone has been instrumental in his progress.

Will is not using his wheelchair at all these days - only his walker. He now has forearm crutches which he is practicing with at physical therapy and at home. Will still needs someone to walk with him to correct his balance. Socially - well, we wish more friends called and came around, but at this age, it seems like children aren't really sure what to make of things. Will continues to have a very quick wit and never-ending negotiating skills.

Will never complains about his disability and truly believes he will walk on his own again. He has a goal to try out for the school volleyball team in the fall and plans to go to his first school dance with out mom hanging on to him :)

Again - so many thanks to all of you who keep Will and our family in your prayers. This journey has been challenging, encouraging, depressing and life changing for our family. Thanks to all.

Clearly now....

2009-12-04T21:35:00.000-08:00

It's been a while since we posted. It is comforting to know that life has now become a happy normal for us all.

Will continues to improve and as you can see...he can see clearly now with his new glasses. Looking good.

Will News?
He is attending school full-time in regular classes. He has a one-on-one aide with him at all times to help him move around campus and to assist with work (they are amazing women!!!). He only uses his walker now and still needs someone nearby to correct his balance. But boy, is he strong!! Standing taller and stronger! At school he has PT, OT and Speech therapy. The team works wonders with him. The balance issue ("ataxia") will really only improve with time. Will also has two personal training sessions a week and his horse back riding class. With the rest of his free time ...he rests (very important), plays with friends, and keeps us on our toes with his energy and humour. He has really come such a long way.

Paige continues to be the worlds best big sister. So patient and concerned about Will. It is actually comforting to hear them arguing and getting on each other's nerves. Back to normal is good :) Paige is no longer playing club soccer (her decision) and has her focus on school sport teams. She wrapped up the volleyball season with her team winning the championship and is now the co-captain of her school basketball team. A great group of girls. With playing only one sport at a time, she now has more free time to just be a 13 year old girl - hanging out with friends, sleepovers, movies....and even spending more quality time with mom and dad. I encourage all families to take a look at their "scheduled" time versus free time with their children.

Will has expressed an interest in being a videographer....so you might be seeing some of his work on this blog soon.

Back in the Saddle

2009-10-03T14:40:00.000-07:00

Cowboy Willy! Will has now started theraputic horseback riding as part of his quest to walk again. On Wednesday nights Will saddles up for his riding session along with a riding therapist and volunteers. Working on his balance and core strength, Will rides without his feet in stirrups - causing him to really have to work to keep his balance. This work along with the magical therapy of these beautiful animals will help William. Just having an activity to look forward to each week makes him happy.

Fergie-licious

2009-09-18T22:48:00.000-07:00

Will was surprised with an awesome gift - a personally autographed photo from Fergie! As in the Black Eyed Peas Fergie! Will LOVES her and the Peas! While in the hospital for 9 weeks, her poster hung over his bed and we played her music to keep his spirits up.

Thank you to our friend Tina who coordinated this special gift. Her cousin lives in L.A. and knows Fergies personal trainer, who contacted Fergie. Ms. Fergie wrote on the picture (hearts "Will U Rock...Love Fergie" and she threw in some x's and o's).

What a Summer...now back to school

2009-08-25T20:12:00.000-07:00

We had an incredible family vacation in British Columbia this past summer. A road trip up the coast, four weeks in Victoria, then an awesome roadtrip home through Oregon, Lake Tahoe, Yosemite. So grateful to spend so much time back "home" with our family.

Paige and Will are now back to school and things are getting back to normal. William is at school full time and has an aide with him to help him with his work and to get around the school grounds. As of this week, he isn't using his wheelchair at all at school, only his walker. Tiring, but he is doing so well.

His new goal is to try out for the school volleyball and basketball teams next year. You Go Will!

On that note, CONGRATULATIONS to Paige who made the school volleyball team. Way to go Paige. She is also playing with a new soccer team this year CCV Stars.

Will IS the Black Eyed Peas Biggest Fan!

2009-08-23T22:32:00.001-07:00

The Oprah Winfrey show is looking for the Black Eyed Peas biggest fan to "be on the show"

When Will spent 8 weeks in the hospital last year, Fergie was looking over him the entire time :) We also played his favorite Black-Eyed Peas music and Fergie to keep his spirits up.

2009-06-26T10:50:00.001-07:00

Will's Year of Recovery

2009-04-23T08:51:00.000-07:00

April 2008

One Year Ago....

2009-04-23T08:42:00.000-07:00

One year ago today William was admitted into the hospital and slowly entered into a coma due to encephalitis. What a year it has been for our little man.

When he woke up from his coma, he could not speak, eat, and had very little movement. After the support of his therapists, doctors, teachers, friends and family he has now regained almost all of his abilities.

Today he goes to school full-time, has friends back in his life to play with, entertains us with his incredibly unique personality, has plans to play soccer again, ride his bike and and swim all summer.

He is still unable to stand or walk on his own - but pretty much uses his walker (with assistance) all the time.

The most amazing thing is he doesn't feel sorry for himself at all and almost never complains. Sure he can be stubborn about doing his therapy.....again.....but his stubborn side has obviously served him well in his recovery.

Thanks to everyone that has supported him and our family throughout this very challenging year. Will couldn't have done it without you!

Champions!

2009-03-23T10:08:00.000-07:00

Congrats to Paige and her soccer team for placing FIRST in the AZ Open Cup!

Softball Girl

2009-03-18T07:09:00.000-07:00

Paige is full-swing into the softball season. Playing with her school team and her league team the Hurricane's - we are having a great time watching her play. She is playing first base and her coach is also trying her at short stop. She really loves to play.

Soccer season is wrapping up - this weekend is her championship tournament! Good luck!

WILL AND HIS THERAPISTS!

2009-03-18T06:27:00.000-07:00

This week will completes his therapy program at St. Josephs Hospital. Since December he has been attending 2-3 therapy sessions a week. This team of incredible ladies (and we know Will LOVES the ladies) have helped Will in so many ways with their expertise, patience and kindness -they pushed him when he needed a push, and he literally "walks away" feeling like a rock star.

Thank you!!

The famous Tara - occupational therapist! Will struggled to complete some basic fine motor skills when he met Tara - like using a fork and knife safely - now he can even cook his own food, write again, use a keyboard, tie his own shoes, etc. Thank you Tara!

The laughing duo! Amber - speech therapist! It is pretty awesome to watch someone do a job that they obviously love. Amber totally "gets" Will. These two laughed so much that it was hard to tell how hard Will was working. His speech has improved so much. He is almost back to speed and his confidence to speak in front of his peers has been a huge achievement. Thank you Amber!

PT in action! PT Therapist Karen (right) and intern Kelly. Karen is the quiet task master! With her soft spoken and kind personality she got Will to do all sorts of challenging work and he never even knew it. "Great job Will" now give me 20 more :) Kelly joined in as the intern and she is destined to be an amazing therapist! Thanks Karen and Kelly!

Go Canucks Go!

2009-02-17T07:33:00.000-08:00

Wow, a long time since we have posted. Sorry!

First off - thanks to our friend and awesome realtor Anna Cosenza for hosting us in the Remax Suite at the Coyotes vs CANUCKS game last week. We had a blast and bonus - the Canucks won! If you snowbirds are looking to move to the valley of the sun, give Anna a call!

http://www.thecosenzateam.com/

More School

2009-01-17T06:09:00.000-08:00

Starting next week, Will is going to attend school M-Th mornings and all day on Friday. This makes him happy because he is more back to "normal" but sad because now he has homework :)

A HUGE step for Will is to use his walker in public. On Thursday his therapists had him walk three blocks from the clinic to a restaurant. He wasn't happy, but he did it. Only to beat that goal by using his walker at SCHOOL (huge huge milestone).

On Thursday night we went to watch Paige's basketball game and Will walked from the car to the gym, across the gym floor and sat in the bleachers. This was in front of a gym filled with players, spectators and cheerleaders (key word)! Then on Friday while at school he walked around campus. His biggest fear is that people will stare at him and think bad things. What he has found is yes, people look at him, but they SAY things like "you go Will.....great job....you the man".

Great news for our Paige - she made it on the honour roll this quarter! For those of you who know her well - you KNOW this is BIG! Way to go Paige - we are so proud.

I'm running in my first 1/2 marathon tomorrow! Meeting up with my Canadian girlfriends today and making a weekend out of it!

A New Year

2009-01-07T22:10:00.000-08:00

Thankfully, 2008 is over. A difficult and challenging year for our family. With every challenge, comes an opportunity to learn. So we won't mark 2008 as the year of encephalitis - it will be the year that we witnessed the goodness in people, how much people really care about each other and are so eager to help - not just friends and family but strangers too. We witnessed the spirit of our children and with their innocence also comes an unwavering strength which is fueled by something we all need to share - HOPE.

We welcome 2009 with open arms and are thankful for all that we have - an awesome family and incredible friends.

Remain hopeful - always.

xo

Christmas Spirit

2008-12-27T21:18:00.000-08:00

Okay, so I am still trying to load the video. I kinda know how to do all this stuff, but for some reason Will's walking video has issues.

Here is a picture Paige took on Christmas day. Paige spent alot of time taking pictures around the house trying to capture images of "spirit/angel orbs". She took alot of pictures and they are filled with orbs. See picture on blog with Paige, Rob and Will. Paige has an orb on her mouth.

Will Walking

2008-12-27T19:10:00.000-08:00

MERRY CHRISTMAS

2008-12-25T11:07:00.000-08:00

Walking By Christmas!!

Yes!!! Will did walk by Christmas! The best walking ever! But we can't seem to post the video to the blog. We have been working on it all day. Stay tuned!

Goal Achieved! Thanks to everyone for your prayers and support. Will's determination is inspiring to all of us. He continues to work hard without one complaint!! Paige continues to be the world's best big sister.

Thanks....Massage.....No Wheelchair Zone

2008-12-08T20:17:00.000-08:00

THANK YOU THANK YOU to our friends and family who have provided Will with financial gifts to go towards his medical expenses. We are so very grateful. His doctor has recommended massage therapy and this is not covered under our insurance. This weekend - your gifts helped pay towards his first massage appointment. "Pink" (love her already) is a talented massage therapist who has worked with children with similar situations as Will. She came to our home on Sunday and Will TOTALLY ENJOYED a 45 minute massage. Not only will this help with his tired upper body (wheelchair pushing muscles) but also to stimulate his leg muscles which will activite and engage the neuro pathways. Hopefully some of those damaged pathways will begin to repair.

Today we limited Will's use of his wheelchair. He used it at school and to attend his therapy sessions at the hospital - but within the home he had to use his walker. He did great! He never complains, just keeps on going. This of course takes more of mom and dad's time because we have to "spot" Will when he uses his walker - but with only 17 days until Christmas - Will is determined to take some solid steps on his own.

Stay tuned for video of Will walking up the stairs at home - with no help :))

Walking by Christmas???

2008-12-03T14:11:00.000-08:00

First, sorry it has been a while since our last post. Will has been very busy with returning to school three mornings a week, and getting settled into his new outpatient therapy program at St. Joseph's Hospital. We were so sad to say goodbye to the team from Rehab Withouth Walls who made the transition back home easier AND helped Will improve so much.

Here is a video of Will WALKING from three weeks ago! Only a few steps without anyone hanging on, but this is huge. He is working very hard to walk on his own, if it wasn't for the "darn ataxia" he would be cruising. We have asked EVERY doctor for the magic pill to make it go aways, but they all say the same thing....time. His new doctor feels it will take 2-3 years for him to return to his "normal" self. We are seriously looking into Oxygen therapy as we have heard it has been helpful to other people who had encephalitis. Doctors say there aren't any clinical studies to guarantee it works, insurance doesn't cover it, but parents and families have alot of good things to say about it.

As you can see from the video, Will is kind of "whatever" about walking, let's get onto the next exercise. Gotta love his amazing attitude and courage.

Thanks for all your support!

Back to School!

2008-11-19T11:13:00.000-08:00

After many, many meetings with the school, William is GOING BACK TO SCHOOL on Monday! He will be attending school Mon/Tues/Fri mornings. He will have a one-on-one teacher working with him in the resource room. He will also receive PT, Speech and OT therapy. He is excited but also very nervous too. He now has his super cool new wheelchair which will help him in navigating and "running" away from all the girls :))

Therapy at the outpatient clinic at St. Joseph's hospital has now started. He will be having 3 hours of therapy there twice a week. He has a very busy schedule!!

In other news....Craig is heading up to Kingston, Ontario to be with our family there and support everyone as Uncle Scott continue his battle with his spinal chord injury. Stay strong Milne family!

While Craig is away, Sylvia and the kids are hitting the road and driving to St. George, Utah to spend Thanksgiving with our friends. We are really looking forward to getting away.

Nana and Grandad (Sylvia's parents) are visiting with us right now and Will and Paige have schooled them both playing Wii. Nice.

Paige is officially the busiest person in this household. With grade seven homework, school basketball, soccer, and just being a 12-yearold - she is moving. Paige had her first school basketball game last night. It was so fun to watch - the team worked very hard. Great to watch Paige playing in something besides soccer :) On that note, this past weekend Paige played in a soccer tournament where she scored on a corner kick - she took the corner kick and it went in! Way to go Paige!

Will is moving on!

2008-11-06T20:06:00.000-08:00

Will continues to amaze us all. He is now able to get in and out of his wheelchair on his own. He can pull himself to stand from the floor. Today he used his walker (with support) more than his wheelchair. His buddy Grant was over playing and Grant got in the wheelchair, Will pulled himself to stand holding onto the chair and with a little support from mom, HE pushed his friend around the living room.

Our home therapy will come to a close next week. This amazing team of therapists have been such an important part in his healing and providing support for all of us as we adjust to our new reality.

No rest for Will though - starting on November 17th he will return to school 3 mornings a week. His new schedule will be: school Mon/Tues/Fri morning; homebound teacher Wed/Thurs afternoon; outpatient therapy at hospital clinic 3 hours each session Monday afternoon and We/Thurs morning.....wow!

Paige!!! She made the school basketball team! She has quite the busy schedule with 7th grade homework :), basketball practices and games and her club soccer practices and games! She keeps us moving.

Pray for our family in Canada!

2008-11-06T20:05:00.000-08:00

Sliding at the Park

2008-10-22T20:10:00.000-07:00

Some more vidoe of Will at the park! We didn't catch it on video, but he also walked up the stairs and slided.

MRI and Will the Movie Star

2008-10-16T09:25:00.000-07:00

We have been putting more miles on the van driving to and from Phoenix Children's Hospital. William had an MRI last week which shows that he has a mild reduction in inflammation on his brain. In a way this is good news. This means that as the inflammation continues to decrease (hopefully) he will continue to improve. We are still looking for that magic pill to make it all go away.

The fabulous rehab program and therapists he is with right now will disappear in a few weeks. Our medical benefits for "therapy" will run out. We will be working hard to work with our insurance and the state program to ensure he continues to receive some sort of therapy - most likely through an outpaitient clinic. We have been soooo fortunate to have been able to work with Rehab Without Walls. The team are like members of our family now.

The movie star..... William was invited back to Phoenix Children's Hospital yesterday to participate in a promotional video for their rehab program. It might be posted on their website when completed. Will was very cute with his answers and if he wasn't sure what else to say he said "and that is all I've got to say". They also interviewed me (Sylvia) and I was so NOT prepared for this - if I make the cut you will be able to tell by the bad hair day and lack of fashion effort :)

PT at the Park

2008-10-13T16:58:00.000-07:00

Will worked hard today with a PT session at the park with his friends. Hmmm...this looks like walking to me :) After playing at this park we moved to another park and he spent some time swinging (he loved it) and playing with lego standing up! Thanks to his friends Caleb, Cassie and Morgan for sharing the day with him.

Will and his buddy Caleb.

Standing up and playing lego with Morgan.

Check out Will's feet.

Hockey and Highlights

2008-10-12T21:33:00.000-07:00

On Friday Will was walking ("get out your checkbook") in the house with his walker and his PT Jerry holding him up. Will told Jerry that he was going to the Phoenix Coyotes hockey game on Saturday night with daddy (thanks Lander family for the tickets :) . Jerry was like "Wow Will I didn't realize you were a hockey fan, that's great, what is you favourite part of the game".

Will said "I like the girls that dance in between periods. I really like the girls with long white hair. Sometimes they put in brown highlights, I'm not much for highlights."

He is back!!!

Lessons Learned Today

2008-10-12T21:23:00.000-07:00

Lesson 1: You can do anything you set your mind to - especially if you have a friend by your side.

I (Sylvia) have been training to run a 10k in November and a half marathon in January. Today I ran the Race for a Cure 5K with my friend Talicia and hubby Jay. We did great - felt strong and kept on our 10 K pace (except for Jay who ran a blistering pace and finished in 22 minutes). We will be ready for our 10K! Talicia is a wonderful new friend in my life and a willing running buddy - she keeps me motivated and accountable!! We did it! (Run dedicated to Fely and Jane - you are missed).

Lesson 2: When a stranger (a mom and her 3 children) approaches you in the grocery store parking lot wondering when you are going to update your blog.....one realizes the power of Will's journey and the goodness of others. Thank you :)

I promised... more posts, more pictures, more video!

Update on William

2008-10-07T09:43:00.000-07:00

William continues to work work work! Today he will be working with his homebound teacher, psychologist, and speech therapist. Also this week he will be visiting the eye doc to check out of there has been any changes with his eyesight. Will is also having an MRI on his brain on Friday. The results will hopefully show some reduction in the inflammation. Thankfully he will be sedated for this. Sylvia is also meeting with the school this week to work on his education plan to return to school. He will most likely return to school in December on a very limited basis - probably only a few hours a day as he will still have alot of therapy to endure. He will likely need a full time classroom aide assigned to help him at all times.

Good news - our medical insurance authorized a brand new custom wheelchair for Will. It is a much better chair and will work well in the school environment. Even when he does walk, he will still require the use of a wheelchair.

Will is still on track to walk by Christmas! We work with him alot on standing - any chance he gets, he will wheel himself into the kitchen and stand up using the counter top for support. Yesterday he spent an hour in the grocery store and had to stand up and get items off the shelf and also stand and take all the items out of the cart at the check out. His balance is improving but he does need someone to help support him.

First Dance

2008-10-06T20:18:00.000-07:00

Paige attended her first school dance on Friday night. She had fun, although was a little disappointed with how people just "stand around". As a 5 foot 6 twelve year old, it was a little difficult finding an age appropriate dress :) So pretty!

2008-09-22T10:30:00.000-07:00

Whatever It Takes

2008-09-17T17:06:00.000-07:00

Getting Will to walk by Christmas is going to take enormous energy and an oustanding attitude - not just from Will but as a family. We are looking at other things we can do to help Will. Like right now, Will is riding the exercise bike for 20 minutes while daddy does pushups alongside him. He can't do this alone.

The PT therapists Kim and Jerry are sooooo amazing! They set the bar high for Will, push him beyond what he wants to do and somehow end up being his best buddies in the process. Kim is even dreaming about Will and treatments. That's dedication.

We are also looking into nontraditional methods to help Will - massage therapy, accupuncture, visualization, etc. The biggest change for our family is going to be our diet. After quite a bit of research we are going to implement a totally new diet for our family. An anti-inflammatory diet has great results in general health and in the reduction of inflammation in the body, pariticularly the brain. The brain cannot totally heal until the inflammation is gone. So starting this week - no sugar, no dairy, no processed food. What will we eat you ask?? Salmon, grains, fruits (berries are best), green veggies and omega 3 oil/fish oil, green tea and water. Oh yummo!

Whatever it takes.

Making List

2008-09-15T09:22:00.000-07:00

Much of Will's time yesterday was spent reflecting on what things he wants to buy with his "walking money". A new idea:

"Mom, when I walk I want to buy an Easy Bake Oven and a mini fridge, I will put them in my bedroom and then I can make cakes and serve juice to my friends."

Walking by Christmas

2008-09-13T08:23:00.000-07:00

This is Will's mission! Every day he talks about his plan to walk by Christmas, quickly followed by a list of things he plans on purchasing with his incentive cash. How did this all begin? While visiting Victoria in July, Auntie Val & Captain Ron said to Will "We will give you $50 if you walk by Christmas"......dramatic pause and response from Will...."Well get out your cheque book". By the end of our visit, many other friends and family pitched in and now in his mind he has a huge payday coming up.

Will knows that if it was truly up to him he would be walking - his motivation is locked in, if only the inflamation on his brain and balance issues would disappear. No matter - he is focused. To help Will with his goal his psychologist is working on visualization techniques and his physical therapists are putting him through the paces.

We are going to track his progress towards his goal and welcome you to keep tabs on him. Starting this week we will also post some video of him working on walking.

His Walking Status Today:
With assistance Will is able to walk up stairs. He can walk around the house with the use of his walker, but bascially needs to be held up by one person. While practicing standing, Sylvia held him up and let go for about 2 seconds and he was "on his own". He was so happy!

His legs are much stronger - he has such challenges with his balance. He now motors around the house by crawling and scooting on his bum. This really works his legs and coordination but most of all provides him with a sense of independence.

The Paige Effect!
Will's number one fan, supporter, friend is Paige. Her patience and love for Will has carried him forward. She carries with her a special gift - she is a natural nurturer and patient soul. The quiet things that she does with Will are making a huge impact. That's our girl!

Going Camping

2008-08-29T08:46:00.000-07:00

Hello Everyone!

We are off for our first getaway as a family this summer. All four of us heading north to Pinetop Arizona for a long weekend of camping. We are so excited about this getaway and the 30 degree drop in temperature :)

Here is a video of William - he spent most of yesterday morning telling me what to pack, and scooting himself around the house on his bum - packing everything from beef jerkey to blankets for fort building :)

Back to School

2008-08-14T14:44:00.000-07:00

Monday was the first day back to school. Paige has had a great week so far, mainly because she hasn't been assigned any homework yet. She has some great teachers and a sweet schedule - starts everyday with Band and then PE - gotta like that :) Now that Paige is in grade 7 she is allowed to play on school teams. Next week she will be trying out for the volleyball team. She has never really played before but her height and enthusiasm might help:)

William is not returning to school quite yet. He will continue his intensive therapies on Mondays Tuesdays and Thursdays. A home-tutor will be assigned by the school to come to our home a few days each week - this work will be focused on bringing him back up to speed. With his brain recovering he does tire easily with academic work so a gradual approach will be best.

We are also looking to schedule time at school each week - possibly attending art class, band (switching from trumpet to drums :) and maybe an hour in his classroom. We visited his "assigned" classroom today and his teacher is awesome. There are also about seven students in his class who were also in his class last year. They were so happy to see Will and of course have a lot of questions about his current situation.

Craig is riding that darn motorcycle to work now - but what a HUGE savings in gas it has been!Sylvia is starting to train for a 10K run - difficult running in the heat but it will make the actual race day in cooler temperatures a bonus.

Thanks go to nana and grandad for purchasing Will a recumbent exercise bike for the house. He loves to get on the bike and pedal pedal like madman!!

VIDEO! Trampoline Fun

2008-07-31T17:09:00.000-07:00

2008-07-31T17:06:00.000-07:00

Nana & Grandad

with the fab 4.

2008-07-31T17:04:00.000-07:00

Handsome man!

2008-07-31T17:02:00.000-07:00

Uncle Robbie

and the kidz!

2008-07-31T17:00:00.000-07:00

Will, Paige and Courtney

2008-07-31T16:57:00.002-07:00

Sailing in Victoria! Thanks Captain Ron and Auntie Val!

Finally! An Update!

2008-07-31T16:32:00.001-07:00

Sorry for the delay in updating Will's blog. We have obviously been very busy with Will's return home and all of his therapy.

Will has now been home since June 19th! He has come a long way. He eats and drinks whatever he wants and his speech is getting much clearer. The ataxia is still holding him back a bit, but he continues to work hard and he is unbelievably positive! His is still unable to walk and his balance is challenging for him. The team of therapists come to our home 3 days a week and boy do they motivate him to work hard.

School is back in session on August 11th but William is most likely going to remain at home for a while longer. He needs to continue his intensive therapy and our hope is that the school district will provide a home-bound tutor until he is able to return to school.

Will, Paige and Mom went to Victoria for 10 days to visit family and friends. It was a wonderful 10 days, perfect weather and we had no problems at all. Thanks to all our friends and family there for their support and kindness!

I'll post some more pictures and an updated video!

Happy Birthday William

2008-06-24T11:35:00.000-07:00

Yes, he made it home on Thursday and we are so happy to have him home for his birthday!

When leaving the hospital last week, many therapists were in tears saying goodbye to Will. They were totally under his spell. Paige and I drove Will home and upon entering our neighbourhood Will said "I'm back baby, I'm back"! When we pulled around the corner to the house - our lawn was filled with friends, neighbours, a welcome home banner, balloons and cheers! Will was smiling from ear to ear. We had his favourite orange chicken for dinner and a yummy cake!

Over the past few days we have been adjusting to life back home. William is sleeping in the downstairs guest room, with Mommy sleeping on a mattress on the floor. He sleeps a solid 10 hours a night and has a very happy disposition all day. He is a ways off from walking, but he will walk around the house with two people helping him. Craig got him into the pool on Saturday and he was all smiles! He also likes to go around the neighbourhood in his wheelchair. Kind of tough being it is 112 degrees most days :)

Craig and Paige left on Sunday for 1 week to Colorado. Paige is participating in a 4 day soccer camp at the University of Colorado in Boulder where she will be joining her good friend Arianna from Las Vegas. This will give Paige the much needed "fun time" that she so deserves - daddy too! They are camping and will surely enjoy the much cooler temperatures.

Grandma Hamilton is still in town and planning on leaving on Thursday. She has been such a help to us all.

Will started his home therapy on Monday - the first therapist arrived a 9am and the last one left at 6pm. It looks like he will have 3 full days of therapy a week. They will be working alot on his muscle control, balance, walking, speech and cognitive abilities. We will be organzing meetings with the school district to get things set up for him when he returns to school on August 11th. The therapists think he will still need his wheelchair when he returns to school plus additional therapy.

Mom (that's me) is hanging in there. Quite tired these days, but just so happy we are all home together again!

HE'S COMING HOME!

2008-06-17T22:58:00.000-07:00

Yes, it is true. After 8 + weeks in the hospital, Will is being discharged on Thursday at 4:00 pm! He is soooo excited!!! We can't wait to have him home. Although he will continue some very intensive rehab, it will all be done in the comfort of our home! Yahoo!

When Will get's home he wants to swim (?), eat orange chicken and play with all the toys he has received as gifts!

Next steps will also involve having all the evaluations and reports re his cognitive and physical challenges sent to the school district where they will develop an individual plan for grade 5.

The Swiss American Cycling Racing Team is sponsoring the "William Hamilton Crit Race" this weekend. We are hoping Will is going to be okay to make a visit to the race!

Grandma Hamilton is still in town and she is a huge help. She has been staying with William and supporting his icecream habit. She is also keeping Paige happy. Paige is so excited that Will is coming home. She has missed him terribly. They really do have a special bond.

Paige is attending a volleyball camp this week at the local college. She has never played before, and decided she would like to give it a try because some of her friends from softball play. She has really picked it up quite quickly and is having alot of fun.

We will be busy tomorrow getting the downstairs bedroom ready for Will, stocking the house with a "brain" healthy diet (fish oil), etc. :)))

Thanks for all the support, prayers and love - we can feel it all around us!
xo

Great News

2008-06-13T17:58:00.000-07:00

YAY!!!!

Our insurance company approved "Rehab Without Walls" for outpatient therapy. This means when Will comes home a team of therapists will come to OUR home for all of Will's treatments. This is a unique and expensive service and our insurance CIGNA came through!!
Thanks for the prayers!

ALSO....Will told his doctor several times today to let him go home. Now that we are approved for this comprehensive home rehab service, he said Will will probably go home some time next week!!

Will freaked out - he is so excited as are we. To have him home is a dream. His 10th birthday is on the 24th of June, so he most likely will be home to celebrate! Yahooooooo.

Field Trip, Food and Wheelchairs

2008-06-12T22:00:00.000-07:00

After 8 weeks - today Will was able to leave the hospital for a field trip. To celebrate Paige's birthday, we took Will and his roomate to Peter Piper Pizza for lunch. It was a great step and very tiring for him too. Mom was so happy to look in her rearview mirror to see our handsome man sitting in his regular seat.

Will was also upgraded with his swallowing and is now able to eat whatever he wants! Watch out!

We had a delivery today - Will's new wheelchair - the one he can bring home was delivered. This is a great sign and a small step towards home. Our "feeling" is he will be home within the next 1-2 weeks.

Enjoy the pictures from today!

Moving On Up!

2008-06-10T11:26:00.000-07:00

Will is doing so well! Since our last post his attitude has totally changed - all positive and all smiles again. He is talking alot and is obviously so happy that he is able to communicate now.

Will is working so hard in physical therapy. He got a new wheelchair which is much sportier and easier for him to push himself. Today he walked 40 feet with a walker and assistance by the therpists. He has ataxia https://ssl.search.live.com/health/results.aspx?qu=Ataxia&cat=cond which can cause frustration - his intentions and motivation to walk and move his body are there, the ataxia makes it difficult. The doctors feel this will go away in time, but it will hold him back a bit.

They did an MRI and EEG which indicate most of the inflammation is around his cerebellum and brain stem.

On Thursday, we are taking Will out on a field trip. We will learn how to get him into the van and transport him safely. His hospital teacher Meg will be joining us on our trip to Peter Piper Pizza. It is also Paige's birthday and we are going to use this time to celebrate as a family.

Grandma Hamilton is arriving tonight and we are thrilled to have her with us. William is so excited that she is coming and we know that her being here will be a huge help.

Currently Sylvia spends the days with William and Craig comes to the hospital right after work and stays until Will falls asleep - which is usually very late!

We will post pictures tonight!
Thanks again for all your prayers - we work hard at staying positive and just continue to move forward and do what needs to be done.

Much love
The Hamiltons

A Low Day

2008-06-04T20:34:00.000-07:00

Although Will continues to improve, today was a low day for him. He worked hard at his therapies, had an eeg test, and another iv line put in (took 4 different nurses to finally get it in - his veins are pretty much all used up) and he is scheduled for an MRI tomorrow. Today, he was sad. He is becoming more aware every day and now that he can speak a bit, is able to communicate his feelings. He is pretty much "done" with this hospital stuff and wants to go home. He said to mom and dad, "get me out of here". It has been such an ordeal for him and he is long overdue for a low day.

Good news - Will is getting a "field day pass" next week. We will be transferring him from his chair into the van and taking him to a restuarant. This will be his first time out of the hospital. He is very excited about this outing! Also, the doctor told us he thinks Will can be discharged in 2-3 weeks, but not to hold him to it :) When he does return home, he will have a long road ahead, but at least he will be home.

Nana and Grandad left on Tuesday and what a great help they have been. Grandma (Craig's mom) is looking to come to town to also help out. We are stating to fade a bit, and the help is so appreciated!

We continue to give thanks for our friends - helping with Paige and keeping her feeling good, delivering meals to us, cutting the grass, Craig's work is sending out a house cleaning service every 2 weeks, Will's soccer team family are visiting Will on the weekends and keeping his spirits up. Thanks to everyone!!

Homerun Hitter!

2008-06-01T09:26:00.001-07:00

Paige hit a 3 run homer in her game last night. Over right field and hit the fence!

Way to to Paige!

Chatty Will

2008-06-01T08:55:00.000-07:00

William was very chatty yesterday. Paige and mom spent the day with him and it was a day of rest, however, he spent alot of time talking - or at least trying to. His doctor said, "Will if you can say my name, I will discharge you". Well, she obviously doesn't know Will - she walked into his room yesterday and he said ..."Hi Doctor Pinckhard-Hanson". She couldn't believe it! He is a few weeks away from discharge, but with this attitude, who knows! Will has also figured out how to push himself in the wheelchair and undo his safety strap.

Paige loves to be with him at the hospital and she is an awesome big sister and caregiver!!

Marking his 5th week in the hospital!

2008-05-30T08:34:00.000-07:00

Yesterday marked Will's 5th week in the hospital. With great motivation, Will marked this date by eating so much "mushy" food by mouth that the doctors agreed to remove his feeding tube. Yay - Will is no longer "hooked up" to anything. It does take some effort and focus for him to eat the soft stuff, but so far his favourites are mashed potatoes and butter, Jamba Juice, ice cream and on a good day ravioli.

Will is getting much stronger physically and is starting to try and sit up on his own. He is now saying a few more words, but it is a HUGE effort! He practices saying the names of his therapists and likes to impress them by saying their names when they least expect it.

Nana and Grandad (Sylvia's mom and dad) have been awesome in helping with Paige, keeping the laundry rolling and also spending time with William. This gives Craig and Sylvia a few hours at home to recharge! Paige continues to be a trooper - she is such a great girl! She spent 12 hours at the hospital the other day and had a great time. The therapists had her working as their assistant. We have always said that she is a natural caregiver - you should see her in action - she is so easy to be around and so caring to Will.

Still no real indication as to when William will come home. We think he has 2-3 weeks more to go. However, the therapists did say that when he does return home, he will still need a wheelchair for a while, and will be referred to long term care/therapy.

More pictures to come :)

Swiss American Cycling - THANK YOU!

2008-05-27T13:26:00.000-07:00

A huge thanks to SWISS AMERICAN BICYCLES and the area cycling community! Craig's friends from his Swiss American cycling team have very generously opened a bank account in William's name to assist with medical expenses (us Canadians really have no clue...). These wonderful people have also received donations from fellow cyclists in the area.

The team is also sponsoring a race in June with proceeds going to Will's fund. Race info: http://www.swissamericanracing.org/

THANK YOU so very much! This is so unexpected - we are grateful beyond words.

2008-05-25T09:23:00.000-07:00

He Speaks!

2008-05-25T09:16:00.000-07:00

Saturday, May 24, 2008

Craig was staying with Will tonight and found him to be quite unsettled and frustrated. Will was trying to communicate with his hands and was having difficulty getting his message across. All of a sudden and with a HUGE amount of effort he said "mom", "dad", and "craig". This is a huge step for Will. We can't even imagine how frustrating it must be for Will - to be so present and aware, yet unable to "do" or communicate. We know his stubborn and spirited personality is going to serve him well as he begins to recover.

William Recovers from Encephalitis

2008-05-23T16:01:00.000-07:00

Thanks again to everyone for their prayers and support as Will recovers from encephalitis. Stupid encephalitis !

Will has been in the hospital for 4 weeks now. He probably has several more to go before he is discharged. Even after returning home, he will have many challenges and further rehabilitation.

When Will was moved to the rehab unit at Phoenix Children's Hospital 2 weeks ago - he had pretty limited movement with his arms, head and legs - could not speak, swallow, etc.

After 2 weeks of pretty intense therapy he is making huge improvements!

Talking: No talking yet, but he is making noises in this throat and is trying SO hard to talk. If he cries, he does say "mom" (heartbreaking for sure). He communicates with a speach board - pointing to words/pictures and uses thumbs up and down for yes or no. He also SMILES all the time. He is very positive and will do whatever the therapists ask of him. He is LOVING all the attention from the female nurses/staff. They love him too.

Eating: Will can swallow pureed food and thickened drinks. He still has an ng feeding tube, but if he continues doing well, the tube may be removed as early as Tuesday! This will be a huge step and make it even easier for him to swallow. They will puree anything for him - chicken nuggets and fries last night for dinner :)

Upper body: This seems to be the most impacted area for Will. His head control is getting better and he can keep his head upright and centered when up in bed or in his wheelchair. He moves his arms very well, has a good grip and is working on controlling his arm movements. His trunk (core) is weak, but improving rapidly. He can sit on the side of the bed, balanced, without assistance for about 30 seconds.

Walking: Will stands very well with assistance - his legs are strong and he does very well with lower body therapy. They hooked him up to a "light rider" harness thingy - that supports his weight and upper body - he then walked down the hall.

The program at the hospital is awesome - he does 30 mintues EACH of physical therapy, occupational therapy, speech, school, rec therapy every morning and then again in the afternoon. He works hard and seems to be happy and motivated.

Not sure how much longer he will be in the hospital, but the doctors feel he will make a 90% recovery - it will take time and patience though.

Thanks again for all of your prayers and healing energy!!

Love
Craig, Sylvia, Paige and William