When we arrived in Michigan on Thursday late/Friday early (hello 1am), we were in for a big weekend, full of surprises. The first surprise came at 1.30am when my mom took us out into her garage. Seeing it set up with tables and items laid out, I was confused, perhaps cloudy from the late hour. My first thought was that the grandkids had been playing ‘store’. She told me to turn around and I saw a banner which said ‘Fund raiser for Sebastian’s therapies and meds’. I turned to Ali and burst into tears. Over the next two days my mom would collect over $500 from the sale and donations. All while doing last minute prep for the baby shower she was also throwing me on Saturday. On Friday afternoon Seb hung out with his grandma in his walker during the sale and met so many generous folks. One family with a three year old daughter spent time talking with Seb and then donated $100. I burst out crying then too. But the fund raising didn’t end there. When we arrived at Shannon’s birthday celebration at their restaurant, she presented me with over $300 from collections they did that week at Riley’s Roadside. And a birthday cake for Sebastian in a joint birthday celebration. The blessings just kept flowing. Although Sebastian was tired from his late night before and a full day of visiting, he had so much fun with his cousins. And this is why I wanted to move to Toronto. Being closer to family is priceless.

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Happy Birthday Sebastian!

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My brother Bill and his wife Shannon

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My niece Addison and nephew Parker

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Sebastian and his cousin Ethan with Papa-Daddy

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The kids and 31 week pregnant me

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A very tired Sebastian with his Uncle Bill

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Sebastian opening gifts from his cousins, Aunt Shannon and Uncle Bill

Silently we’ve been struggling since we moved in November. (Moving every year or two or even three, ain’t cheap.) We just keep truckin’ on and hoping things will balance out. Never could we have imagined the blessings and generosity of loved ones – friends and family – in our lives over the past two weeks. With these donations Sebastian will get the (private physical) therapy he has not been able to get consistently for the past several months, as well as pay for the hippotherapy he is currently getting. These donations also enable us to add new therapies (like osteopathy) and help pay for medicines and new diet supplements. Because we are finally on a cycle of OT and PT through the government health plan, Sebastian has been receiving (minimal) therapy once a week. But we want more for our son. I cannot truly express how thankful I am for the generosity and kindness of family, friends and strangers we experienced this weekend.

In March we became eligible to apply for benefits for Sebastian which will help pay for his private therapies. We should hear from them within 90 days. We also have organizations like Easter Seals and Ontario Federation for Cerebral Palsy which have helped us in the past with things like equipment (Seb’s walker) and Hippotherapy. But these organizations generally run out of funding by Spring after stretching it out to many families in need. We have also chosen to send Sebastian to a special pre-school program which is not free. Although we know that this takes away from his therapy funds, we believe that the experience and learning he receives at school is invaluable. Because we want the best for our son, that involves balancing life and therapy.

$740 was raised on Gemma’s 20 mile bike ride for Seb Can Do! We are so thankful. This amount will cover Sebastian’s Hippotherapy sessions for this term as well as a couple private therapy sessions. We cannot express our gratitude enough.

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At the finish line.

On Sunday, May 6, Sebastian and his Papa-Daddy ran and rolled in the Toronto Marathon 5k in the Run, Walk, Wheel, Roll event which raised over $24,000 for Three to Be. Sebastian also celebrated his 4th birthday on this special day. Our friend Elisabeth and Sebastian’s teacher came out to celebrate, along with one of his classmates and the whole team that participated in RWWR. They even surprised us with a birthday cake for Sebastian! We are so thankful for everyone who donated and took part in such an important event for our family.

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For more photos of the big event, visit the flickr slideshow I have created RWWR Toronto Marathon 5k. All photos of children are private and not viewable in the set due to privacy reasons. There were many friends celebrating with Sebastian, giving him hugs, bringing him gifts and checking out his medal. It was such a special day for all of us.

Thanks again for all of your donations and support. Sebastian raised $746 for RWWR/Three to Be with your support.

This post has been cross posted at Free As Trees.

Today we have a guest post from an old friend that has become one of our biggest supporters in so many ways. I’m so thankful for her big heart and generousity. About a month ago she approached me with an idea to raise funds for Seb Can Do for her 20 mile bike ride. I was touched by her kindness and motivation. She has asked family and friends to donate to our fund to help pay for Sebastian’s therapies. So far she’s raised $250, which will pay for his Hippotherapy sessions in May.

Please read her story below. If you’d like to sponsor Gemma on her big ride this weekend you can do so through the PayPal button to the right. Thanks so much.

20120509-104659.jpgGemma’s daughter and husband.

Seb’s mama and I attended high school together and like most I hadn’t spoken to her in years but then through the power of Facebook we reconnected just before the love of my life, my daughter Alex entered my world and not too long after her baby boy was born, Seb. Seb went through a traumatic delivery and as a result he has moderate dystonic cerebral palsy, which affects all four limbs and motor function. To me Kara is the most inspiring mother I have ever had the pleasure of knowing. She fights every day for Seb for simple things I know a lot of people take for granted. Because of her I don’t take for granted anything Alex does from climbing to running to saying “mummy”.

Seb is so intelligent and he is just like most children as Kara says it just takes him a little longer to achieve the milestones that come easily to most children. For him to achieve these milestones it costs a lot of money and involves a lot of therapy and specialty equipment. The Sharp’s devote every free penny to Sebastian. Every penny. Just a simple bike that brings endless joy to many children costs almost $5,000. And you know what I think? That’s crap.

When I think about Alex’s upcoming third birthday a bike is on our list. Lately, every bike store we go into or retail store that sells bikes, Alex wants to “test them out” and watching her get so excited always makes me pause for a moment because it’s almost a given that she will ride this bike and get so much joy from it. Seb, like every child, deserves that same joy. For his third birthday last year his parents were able to give him a bike. But it cost close to $5,000. He loves his bike and the pictures alone just bring so much joy to me; I can’t imagine how his parents felt watching him ride his bike. Knowing that he was doing what so many other 3-year old’s were doing at that exact moment.

From two weeks old he has been in physical therapy, occupational therapy and speech and language therapy. None of that is cheap or easy for him and yet he continues to smile. A big wide amazing smile.

I am doing a 20-mile bike ride on Saturday and asking family and friends to donate to a boy that they do not know to help him to continue to achieve the milestones I see Alex making. Things like riding a bike. Amy small donation will be greatly appreciated and will go to an invaluable therapy session or equipment. It is a rare thing to see the difference you can make in the life of somebody else. In this case you’ll see Seb working hard to achieve one small step and how big of a smile he makes by taking one step.

20120509-105037.jpgSebastian on his new bike on his third birthday.

Footnote: Gemma lives on the other side of N. America and we haven’t seen each other since I graduated highschool.

We have been working with a CWAS (communication and writing aides) team (SLP and OT) for a few months. They have gone into Sebastian’s school to evaluate him as well as worked with him in our home to decide on/try different ways to help him access communication. They’ve then been back to reevaluate him to see how the equipment they have loaned us is working in both the home and school setting. Their first visits to our home focussed on providing access for communication using switches, such as a Big Mac switch and a head switch in conjunction with picture cards and computer games/stories (more on this in a different post). Currently the team is coming once a week to do literacy/writing activities with Sebastian using eye gaze and smile confirmation using both a flip chart and a low tech device (more on this in another post).

At home we are integrating the Big Mac switch with a reading activity with Sebastian. We choose a few books with repetition, such as Eric Carle books. After Sebastian chooses the book he would like to read we record the repeated phrase into the switch. He sits in our lap or in the bean bag with the switch in his lap for easy reach. As we read the book, when we get to the phrase we tell Sebastian it’s his turn to read and he hits the switch. After a few times he doesn’t need prompting and can anticipate when it is his turn. This is a great early literacy activity. He can take part in the reading of the book and also learn the phrase just as verbal kids who re-read their favorite book learn to ‘read’ the words from memorization.

Here Sebastian is reading Polar Bear, Polar Bear, What Do You Hear? with his papa-daddy.

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Although I taught kids from kindergarten to grade 3 and did extensive work and research in literacy learning, I continue to learn about how I can teach my non-verbal son how to read. Introducing him to words and letters in different ways is just the beginning. We have always read with/to Sebastian, since he was in the womb. He has a very good understanding of the importance of books and has a love for reading with us. Even though he can’t pick up a book independently and leaf through the pages, we give him many opportunities to do this with us, as well as with other family members and friends. Every night he chooses which book we read at bed time. We hold two books in front of him and he takes some time to look at both and then reaches for the one he wants, smiling. Sebastian has favorite authors and books, just like his mama and papa-daddy. (I can do another post about favorite books/authors too.)

Learning how to read and ‘write’ will enable Sebastian to communicate his thoughts and feelings, hopes and dreams. It will open up a world for him that many of us take for granted.

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On Sebastian’s 4th birthday, May 6, we will be celebrating by participating in the Toronto Marathon. Team Seb Can Do will be participating in the 5k Run, Walk, Wheel, Roll (RWWR) while also supporting Three to Be, a fantastic charitable foundation focused on advocacy and raising funds to support innovative research, education and therapies for children with neurological disorders.

Sebastian and his Papa-Daddy will be Running and Wheeling in the race while this 28 week pregnant Mama will be cheering from the sidelines, and probably crying with pride too. If you are in the area and would like to join us, please get in touch and I will forward you the details. If you are not in the area and would like to show your support, please visit our team fundraising page Team Seb Can Do on the RWWR website. There you can leave a special message for Sebastian too.

After the race we will be having a small gathering of friends at the Three to Be tent for treats to celebrate his 4th birthday. It will be a big day for our family!

RWWR is a multinational volunteer initiative designed to provide experiences that transcend the physical limitations of the body.  We do this by pushing children with physical, cognitive, and neurological disorders through marathons, half marathons and other physical endeavors while simultaneously building awareness and raising money for the amazing causes that support these children.  RWWR is unique because kids are given the opportunity to become actively involved in raising money for research and programs directly benefiting them!  Since its conception in 2009 RWWR has assisted over 50 children participate in first time race experiences and in the process has raised over 50 thousand dollars for our partner programs.  

All funds raised through RWWR 2012 will be going directly to THREE TO BE in support of their incredible work in the development of innovative research, education and therapies for children with neurological disorders.  Become a friend of RWWR.  Support us with a donation or join us by running your own race!

See you at the finish line!

Although we have reached our modest goal we are hoping to go above and beyond. Please consider joining our team or donating by visiting Team Seb Can Do on the RWWR website.

In October 2011 we started receiving OT at the place where Sebastian gets a lot of his services. We had been on the waitlist for over a year. Now that he has been picked up by the OT and PT (physical therapy) teams, Sebastian will have 12 week blocks on and off for each. These therapy blocks are covered by our Ontario Health Insurance Plan (government health care), thus the reason for the long wait. But, we can’t afford to pay for OT and it is not covered by private insurance at all. So even with the wait, we are so happy to finally be receiving the services Seb needs. Sebastian did get some private OT last year, but not often enough.

The first set of blocks overlapped, so we had a very busy late fall and winter. Currently he is doing an ‘on’ block for PT and ‘off’ block for OT. Once we finish the PT in May, he will start with OT again. At the beginning of each block the therapist sets goals and at the end the goals are assessed. For OT Sebastian worked on his sitting, head control and reaching. He improved in all areas.

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Working on sitting and reaching for the toy.

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Big chest stretch. Which is important for Sebastian as he tends to extend forward.

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Working on side sitting.

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Increase head control strength with ball exercises.

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These photos were taken very early on in the therapy block. I’m not great at taking photos during therapy. I know I should be taking them at the beginning and end of each block. That’s my goal for the next set of blocks! I also need to remember to bring my camera and not rely on my phone for photos.

More photos will be posted in the Therapy in Toronto set on flickr.

This summer has been unlike the past two summers. Living in Canada we now have access to therapies and the weather isn’t quite so hot as being in Cairo. We are also able to see my family in Michigan more often so a two month long stay at my mom’s once a year isn’t as necessary as it was the two previous summers. This summer we’ve been able to go on weekend adventures with Papa-Daddy and share stories with him daily in person, rather than over the phone, like the summers we spent apart. We’ve been able to enjoy friends visiting and making new friends in the park in the water play area. It’s been a laid back summer and we are still enjoying it. Sebastian is finishing up his second, and last, week of camp at his pre-school, where he’s made new friends, met new teachers and had new adventures.

Although we have access to different therapies, we haven’t been able to afford them as frequently as we’d like. We are STILL on the waiting list for PT and OT covered by OHIP (national health care). Sebastian had three sessions using the Theratogs and he works hard every time. He loves going to see his therapist and is so proud of all of his achievements. And so are we. The photos below are from his most recent session, a week before summer camp started. When asked if he’d like to wear his special suit, he always smiles. It helps him sit up straighter and works his muscles in different ways that allow him to build strength while making things easier to accomplish, like sitting and reaching for toys. You’ll notice he’s sitting on a potty seat in two of the photos. We were trying out an idea that we hope will work at home for potty time. Yes, I’ll be writing about that closer to the end of the summer, after I finish reading all of my books on the subject!

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In the next two weeks Sebastian will be getting his Kid Walk walker as well as a set of Theratogs. We are thankful for all of the support we have received from friends and family in past fundraisers as well as to Easter Seals which has helped fund the walker. Watch out world, Sebastian is headed your way!

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‘Talking’ on the Tubaloo

An open letter to our readers, fans, friends and family,

We have appreciated your support in the past, and are writing today to share about our latest adventure while seeking your support again.

Last year Holland Bloorview Kids Rehab Hospital started a contest called filmpossible. This year we are taking part. filmpossible is a video and photo contest that’s bringing visibility to disability! The photo above is our submission.

You can view our entry and vote for us HERE. You need to create a login to register to vote. It’s quick and easy!

The sponsor Cisco will donate $1 for every vote up to $10,000 to Holland Bloorview, where Sebastian receives many services. In the first round of voting, the top three submissions with the most votes receive monetary prizes. The judges also choose six from each category to go on to a round two of voting, with the top three in each category winning prizes. If we win any cash prizes, the funds will be used to pay for Sebastian’s therapies (so that they can be more frequent than once every two weeks) with a portion of the winnings also donated to Easter Seals. With the help of Easter Seals, Sebastian’s Kid Walk (walker) is scheduled to arrive next week.

Round 1 voting closes August 21, so please vote today! Also, take a look at the other entrants as there are some beautiful videos and photos in the contest. And don’t forget to spread the word!

Thanks so much and wish us luck! Please vote for our entry and help us bring visibility to disability!

SebCanDo
aka The Sharps, Alastair, Kara and Sebastian

A special thanks to our fabulous friends, The Divozzos, for being a part of our photo as their daughter Jilliann stars along with Sebastian in our entry.

In March we started trying mobility equipment for Sebastian. With the help of services at Holland Bloorview and the vendor Motion Specialties, we were able to trial an adaptive stroller AND manual wheelchair for two weeks each. Although Sebastian enjoys a stroller ride on a sunny day, I felt unsure that it would continue to be age appropriate for him to have a stroller as his main means of transportation. Due to funding, mobility equipment needs to last 3-5 years, meaning Sebastian would be between 6-8 when he would be able to switch from the stroller to wheelchair. That didn’t seem age appropriate to me. Having the opportunity to try both at home, in the car, at school and in therapies made a huge difference.

Bingo Adaptive Stroller (very similar to the Kimba Adaptive Stroller). The major bonus with the stroller is that the seat can be removed and placed on an indoor base which is a high-low base on wheels. This was great for being at school. Sebastian’s classroom isn’t very large, so maneuvering the stroller to the table for snack time wasn’t as ideal as putting the seat on the high-low base. Although it was an option, it wasn’t an easy switch after first, so when I was in a hurry to feed Sebastian, I didn’t take the time to switch from stroller to base. Sebastian’s feet also didn’t reach the stroller foot tray, so a foam base would need to be created for his feet to rest on.

The Bingo stroller is BIG. It is very wide and didn’t fit through all of our doorways easily. It is also very HEAVY. Getting it into and out of the back of our Subaru Forester (2005) was not easy and it took a few times before I was probably even doing it safely in terms of leg and back support. It also took up a lot of room, especially if we fit the base in as well, leaving little to no space for additional items. I know many people with kids with mobility disabilities have mini-vans. At the time of purchasing our car, it was not an option for us.

Of course the stroller was great for walking through the neighborhood or being out and about and eating. It offered Sebastian the support he needed while also providing shelter from weather with it’s large sun visor and rain cover. We went to the CN Tower with the Bingo on a very cold and sunny day, Sebastian was nestled safely in his cocoon. He was also able to eat lunch easily and have a place to rest when tired. We had extra room beneath the stroller for our bag of tricks, food and meds for Sebastian. This is definitely a plus for the stroller.

Bing Apaptive Stroller

Bing Apaptive Stroller

Bing Apaptive Stroller

Bing Apaptive StrollerBing Apaptive Stroller

Despite the gorgeous photos my hubby took and the fun outings we went on to try the Bingo in all situations, before we even got the wheelchair to trial, I was pretty sure the wheelchair would be the way to go. Mainly due to age appropriateness, but also because the stroller was too big and heavy. Would I have wanted the stroller had Sebastian been younger and then worked our way up to a wheelchair? Not likely. Sebastian wasn’t even keen to sit in a stroller until he was a year old. And the ones we started with were easily modified to offer the extra support he needed. We also traveled quite a bit and lived in a country without much accessibility, so using the strollers we had/have worked best for us. Although I liked the option of the stroller seat base moving onto the high-low base for eating and play, I would have preferred a special seat for these activities, not needing to use them as a mobility option as well.

Zippie Quickie Tilt Wheelchair
One of the main things Sebastian needs is the option for tilt for when he gets tired and has trouble keeping his head up. This was an option with the Zippie Quickie Tilt so we tried it out. Right away I liked the size of the chair. It was easy to maneuver at school and into and out of the car. Although it’s not light by any means, it is much easier to lift into the car in one go, without even needing to break it down. Because the size is smaller, it’s also less awkward to lift in and out. There was some room for groceries as well, although one of the back seats was down for the handle bars. We also had the opportunity to use the chair at therapy and took it out for a neighborhood walk on an overcast day. The huge bonus for Sebastian being in the stroller was the sun visor. I think that for a walk along our nearby nature path I’m more likely to take the stroller or even our carrier. If eating is not involved, we do ok without the additional support a wheelchair provides. Unfortunately we didn’t get a nice photo shoot of the wheelchair.

Wheelchair Trial
Sebastian is waiting for lunch. Hurry up Mama!

Lunch Time
Much happier after eating!

As I mentioned before, using the wheelchair is also more age appropriate. Some people asked about the manual versus the electric. Getting a manual wheelchair now is beneficial because if we do need an electric one later, it will be good to have the manual in situations where the electric is too heavy. Not to mention that we just don’t have the car or home for an electric wheelchair at the moment. We were advised to get the manual first because getting funding to get a manual after having an electric is pretty much impossible. This way we can have both if  necessary.

We decided on the wheelchair over the stroller. Since we were deciding between two different types of equipment, we didn’t then decide between different brands, like this wheelchair versus another brand of wheelchair. Before our trials I did research different types of both adaptive strollers and wheelchairs on blogs and online support groups, which helped me choose our vendor. I felt like the vendor we chose had options that seemed good for us. If you are researching the best seating/mobility equipment for your child, have a look at Bird on the Street’s info page on equipment.

A word about time lines and funding: Under the government health care system (OHIP), you first sit on a wait list for the seating clinic. You choose a vendor from a list and then once you tell them they put you on another wait list for the actual seating clinic appointment. We had met our vendor when trying some seating options through a private clinic where Sebastian attends feeding/speech therapy when he was still seeing an OT there (when we could afford it). We waited about 6 months before we got into the seating clinic. We had one month of trialing the equipment then another month to get the paperwork and insurance approval. We wait 3-4/4-6 months for additional funding from a government program (ADP) which helps fund equipment. Last week I sadly discovered that there was a slight glitch in paperwork and the right forms were not submitted to our insurance company by the vendor when I thought they were (miscommunication). Although it’s pretty definite they will cover the cost the ADP funding doesn’t cover under our plan, we have to wait until both funding has been approved to get the chair. We should get Sebastian’s wheelchair this summer.

Seb, Elmo, and Theratogs

Seb, Elmo, and Theratogs

Seb, Elmo, and TheratogsSeb, Elmo, and Theratogs

We are now trialling a set of Theratogs (thus the reason for wearing them over his clothes).

Fun in Kid Walk
Trying it out for the first time at therapy, also wearing Theratogs.

We’ve been able to trial some equipment this past month and hopefully I will post this week about the adapted stroller and wheelchair. I think we finally found the walker/gait trainer that is going to be right for Seb. He loves the Kid Walk. We tried it at therapy a few weeks ago and were able to trial it at home for two weeks. Sebastian needs a lot of encouragement and help when he’s wearing his braces to move his legs and pick up his feet. When he’s just wearing slippers, he’s jumping and taking steps forward with just prompts from my pushing/pulling of the walker. He also enjoys a bit of independence and is much happier to hang out in it while we are in the kitchen getting dinner ready too. It’s pretty exciting stuff.

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From the photos you can see how open it is in the front so his peers can go right up to him an even walk alongside. He tried it out at school and everyone had fun walking with him across the classroom. We are hoping to get one for him in time for his school summer camp the first two weeks of August. I’m having his PT write up a letter to go with the estimate and application for ADP funding to see what we can get covered. Fingers crossed it will be fully covered. I will also be getting an estimate for Peidro boots to send in to our insurance company. I’m hoping these would work better for him than his braces for when he’s in the walker. They are orthopedic boots with additional support, usually costing around $400, but allow more flexibility than his current braces which are not yet hinged in back.

Walking is an exciting prospect, but a little motivation for independence is even better.

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Trying it out with AFOs on.

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The exerpt below was taken from an email I received today from Reaching for the Stars, an organization in the US raising funds for CP research, providing support for families and raising CP awareness.

‘We are very pleased to announce that today, March 25, 2011 has officially been designated “National Cerebral Palsy Awareness Day” by the U.S. Senate (Resolution No. 75). Senator Johnny Isakson (R-GA) sponsored the effort, along with Senator Robert Casey (D-PA), via the efforts of RFTS over the past year. National Cerebral Palsy Awareness Day has now been put on the National Health Observance Calendar permanently and we are thrilled to see so many organizations and groups around the country marking the day in a variety of ways that draw much needed attention to Cerebral Palsy.

The establishment of National Cerebral Palsy Awareness Day helps shine an important light on CP and those children and families impacted by it. Cerebral Palsy is the most common motor disability in childhood. It is not a disease. It is not contagious. The latest statistics show that the Cerebral Palsy prevalence rate is approximately 3.3 per 1,000 births – more common in any year than many types of cancer, stroke, spina bifida or muscular dystrophy, and affects over 800,000 Americans. In the majority of cases, the cause of CP and how to prevent it is still unknown, despite advances in genetics, obstetrics and neonatology.

There is currently NO federally funded national CP surveillance or causation research despite the number of children, adolescents and adults affected.

It is estimated that the lifetime care and medical costs for all people with CP who were born in 2000 alone will total more than $13.5 billion. Dedicated research is needed to investigate the cause and best interventions for CP to help reduce this substantial (financial) burden.’

For more information please stop by Reaching for the Stars.
One of their current spokespersons/advocates is Michael Kutcher, Ashton Kutcher’s twin brother with CP.

Remember to post any questions in the comments as I will be answering them on March 31.


I’m kind of cheating. When the month began, I noted that it was Cerebral Palsy Awareness Month and that this month also saw Cerebral Palsy Awareness Day (March 20) and Epilepsy Awareness Day (March 26). And then life got busy, as it does, and I didn’t post on Sunday. Oops. It was also a big day for March Madness in this house. Michigan vs. Duke. I didn’t actually watch the game, but Ali and Sebastian did while I made dinner. It was a close one.

We came out with Sebastian’s diagnosis on World Cerebral Palsy Awareness Day two years ago. This year, I wanted to ask my readers (you!) if there were any questions about Sebastian that I could answer and then on that day I would post all the answers. Well, Sebastian was on Spring Break last week and he was also sick with a cold all week, so that meant little-to-no blogging time. I’m also taking two writing courses, one online (for free, I won it!) and one which meets once a month, so I’ve been doing a lot of personal writing as well.

Since it is still Cerebral Palsy Awareness Month, I’m going to ask now for those questions, anything at all, and post the answers at the end of the month. Or share a story about an amazing person in your life that has CP. Because I certainly know there are many.

Love Our Little One

Kids are expensive. I’m going to go out on a limb here and say kids with CP are more expensive (regular trike $150, adapted trike $4900). I recently read over at Mama Lewis about the cost of raising a child with additional needs in the UK, a country with national health care like us in Canada. Where we get some help from government programs. Compared to the US which is insurance based and usually comes with a fight. We also have insurance to help out with additional costs not covered by the government which helps pay for private therapies while Seb is on the long wait list for publicly funded therapies. Ha. Unfortunately, it was not created for parents of a child with a disability. It was created for someone who might get a sports injury.

Our plan covers $500 a year for PT. One session of PT privately costs between $120-125 an hour. An hour. In Egypt it was $80 an hour and our insurance covered 80% of all costs/therapies (except alternative ones). Hippotherapy is $70 per half hour session. It is covered under PT. We’ve used our yearly allowance on that alone already. ABM is not covered. We stopped going shortly after school started. School costs $505 a month, prorated for starting in November. Our plan does not cover OT. One session privately is also $125 an hour. We did half hour sessions every two weeks once school started to help minimize costs. SLP/Feeding therapy, that’s $125 an hour too. We’ve been doing 45 minutes every two weeks. We just started doing an hour. Our insurance covers $1000 a year. Better. But if you do the math you’ll find weekly visits, which are better, would put us at our limit in just a few months.

Let’s talk about equipment. This is the department where we come out on top, so to speak. There is a program here called ADP which can fund up to 75% of equipment costs depending on your salary and you are required to pay the remainder. So, let’s say we want to get a manual wheelchair for between $5-6000. We (hopefully) pay around $1200. The wait for the funding is about 3-4 months after applying. Not too bad. There was also a 5 month wait for the seating clinic which would put all of this in motion. I called our insurance company today and it looks like they will help cover the cost of the wheelchair. I’m almost jumping for joy; I am so very excited about the possibility that the cost of the chair may be fully covered. That would pretty much make my month.

We are finally on the wait list for PT and OT at the hospital, which means we could look at applying for ADP funding for a walker/gait trainer by summer too. Our costs for that with funding hopefully don’t go over $1500. Which we have set aside from our Calendar Fundraiser last year. I will also submit an estimate to the insurance company with a letter from Seb’s PT to see about getting additional help from them. The reason for the wait in getting on the wait lists for OT and PT? First we had to wait for an appointment with a developmental pediatrician. That was about 5 months. Then she had to discuss Sebastian with his therapists at school. Her belief was that since he is in school he gets therapy there and thus doesn’t qualify for additional therapy covered by OHIP.

Sebastian’s school therapy is on a consultative basis. There is an OT, PT, and SLP (or SALT) at the school once or twice a week for all the kids at school who need their services. They come in to see Sebastian in class and sometimes try new things with him or work on skills he’s developing and then show the teacher what to do. Any therapy he gets at school is mainly carried out by his teacher in bits throughout each morning, over the course of the week. Making sure he is in the right positions, trying different equipment, activities for fine motor development, etc. In the beginning the therapists spent more time with Sebastian so they could get to know him and his needs. I think the therapists at his school are fabulous and his teachers are wonderful. For one-on-one work he needs private therapy until we get it from OHIP, which is organized to start when school is over for the summer.

Before moving to Canada I had heard nightmare stories about waiting to be seen by doctors. Well, that has not been the situation for us. Yes, we have to wait to get appointments with specialists but we have a pediatrician that I can call up in the morning when Sebastian is sick and they will fit us in that day. If we need advice, the nurse will call us at the end of the day. We’ve been to the ER a couple of times. Thankfully we have not waited in the waiting room either time. We waited 6 months to see a gastro-ped, but then she didn’t have anything new to tell us. We were meant to wait 3 months to see a neurologist, but after Sebastian had an increase in seizures and we ended up in the ER, the neurologist on call that night got us in to see a specialist the NEXT day. Before we had OHIP our insurance reimbursed these visits 100%. Now that we have OHIP, we pay nothing.

Medications. Sebastian takes a lot of medications. Our insurance helps with that so we pay very little every month, depending on the script. Name brand ones cost a little more. I read a post from a mom in the US that paid thousands of dollars last year on her daughters prescriptions. Our previous insurance in Egypt covered 80% but when we were in Egypt we couldn’t get the medicines he needed!

I am so thankful we live here in Toronto with national health care in place. We do struggle to afford all of the additional therapy Sebastian needs but he is also very well taken care of by the system. We go to a feeding and nutrition clinic every few months at the same place where he had his seating clinic and (hopefully) soon his OT and PT. It took time to get ‘into’ the system and Sebastian being in school helped fast track many, if not all, of his services. No situation is perfect and there are times when I feel worried about whether he is getting enough therapy because of what we can afford. Then I find out we get help with some of the equipment he needs and things start to balance out a little.

There are some people in the US that are afraid of a national health care system. This makes me sad. I’m pretty sure that we can’t afford to live in the US on a single income with Sebastian’s needs. If we had lived in the US when Sebastian was born, we’d likely still be paying on tens of thousands of dollars from his 16 days in the NICU. You could argue that it’s also possible it may not have happened. It could too be possible that had we been at another hospital in London, where the maternity care was better, it wouldn’t have happened either. But I digress. It did happen. And this is what it cost. And this is how we do it. One day, one therapy, one piece of equipment at a time.

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