Rayments Life with Spina Bifida

Spina Bifida Genetics Research Project

2012-01-16T10:06:00.000-08:00

In case anyone is interested, here is some information. You can find more detailed information at the website. We most likely will be taking part and will update you as soon as I know more

Spina Bifida Genetics Research Project

About Us
We are a group of experienced and well-published scientists who are collaborating to investigate the role genetics play in spina bifida. We are extremely encouraged by the results from our research and excited about its potential application in preventing spina bifida.

What's the Spina Bifida Genetics Research Project About?
This study is the second phase of our research to determine genetic factors that contribute to the incidence of spina bifida (myelomeningocele). We are focusing on the genes involved in how our bodies utilize the vitamin folic acid.

One potential outcome of this research could be a genetic test to identify women with an increased risk of having a baby affected by spina bifida, based on their genetic profile. Once identified as high-risk, it is likely that they would be advised by their physicians to begin high dose folic acid therapy, the same recommendation currently in place for women with a previous pregnancy affected by spina bifida. High dose folic acid (4 mg per day) is generally not prescribed for women with no other risk factors and is regulated by the FDA as a prescription drug.
In this phase of our research, we are seeking the participation of women who have had children affected by spina bifida and who were not enrolled in our first study, completed in mid-2010. Our goal is to replicate the findings of that study in a separate group of women. Participation in the study involves filling out a questionnaire on our secure web site and providing a saliva sample via the mail.
You can learn about the science underlying this study HERE

If you are interested in being part of the study (Hasn't began, but you can enroll your interest) ENROLL

For More Information or To Ask Questions about the Spina Bifida Genetics
Research Project
If you have questions or want more information, it's easy to contact us.

Mail:	Spina Bifida Genetics Research Project 348 Hatch Drive Foster City, CA 94404
Phone:	866.575.0110
E-mail:	info@sbgenetics.org

Jake's Birthday

2011-10-28T09:11:00.000-07:00

As promised here are some of the pictures from Jake's birthday party -- just decorations and stuff -- was so busy with the kids during the party that I forgot to take pictures. Thank you to everyone for suggestions for Jake's Birthday Party. Here are some of the pictures - unfortunately the ones I took with the Ipod look like crap, so I didn't include them

Jesse helped me with this

Bloody Eyeball Punch (Huge Hit!)

Brains in a Jar

These taste YUMMY!

Sweet Revenge Cupcakes in Bolton

Goodie Bags with gummy body parts, whoopie cushions, fake snot & gift card for Empire Theatres

Me and Freddie Krueger

Spina Bifida Calenders

2011-08-30T10:01:00.000-07:00

"Thank Goodness It's Friday" Lottery Calendar

Now available!

SB&H has created another fabulous lottery calendar! What makes our calendar so special is its focus on spina bifida and hydrocephalus combined with the opportunity to win $15,000 in cash prizes from $100 to $1,000.
The 2012 calendar features the amazing work of artist Lorna Wreford, 73, living with spina bifida. Her unique style of fine-line drawings tinted with water colours reflects the beauty of the Canadian countryside and images of fancy. We are confident that you will love this one-of-a-kind 9” x 12” wall calendar!

Buy one for yourself or give them to mark special occasions. The calendar is a unique gift for everyone on your holiday list from family members to colleagues and is a fantastic way to promote awareness of spina bifida and hydrocephalus in your community.

Become a calendar seller and help make the 18th year of this fundraising and awareness initiative a success! If you have thought about volunteering for SB&H but don’t know where to begin, think no more. Join our 100+ sellers by taking 10 or 20 calendars. Your efforts will help us meet our goal of selling 3,000 calendars!
Each year, calendars are sold province-wide to friends, family, neighbours, co-workers or business associates. Please join our team of dedicated individuals. You can make a difference!

Calendars are $20. Proceeds help support vital SB&H programs and services.

SUPPORT A WORTHY CAUSE AND GIVE A GIFT THAT KEEPS ON GIVING THROUGHOUT THE YEAR!

To purchase your calendars you can purchase them directly from Me or for other ways to purchase or for information about selling your own copies contact the SB&H

Great Reasons to Buy a TGIF Lottery Calendar

Proceeds will assist children, youth and adults living with spina bifida and/or hydrocephalus across Ontario.
This important annual fundraiser provides stable funds for SB&H programs and services.
The calendar is an excellent way to inform friends, co-workers and the community about spina bifida, hydrocephalus and the Association.
This is an attractive, functional 9” x 12” wall calendar featuring the beautifully detailed paintings of artist Lorna Wreford, 73, living with spina bifida.
The TGIF calendar is a unique gift idea for the holiday season or just to show you’re thinking of someone.
Buyers have a chance to win cash! In fact, they can win more than once since winning tickets are returned for the next draw.
Win once and the calendar pays for itself!

Draw details

Weekly cash prizes throughout the year worth a total of $15,000!
A win guarantees a minimum cash prize of $100!
Thank Goodness Its Friday means that you can win cash every Friday throughout the year.

47 prizes of $100	Thank Goodness It’s Friday (Fridays January to May & July to December)
5 prizes of $200	Thank Goodness It’s Friday June Special (Fridays in June marking Awareness Month)
12 prizes of $100	First of the Month Bonus (First day of each month)
12 prizes of $250	Mid-Month Madness (15th of every month)
12 prizes of $100	Payday Advance (27th of every month)

...PLUS 11 fabulous bonus draws
$200 Valentine’s Day
$200 Family Day
$200 St. Patrick’s Day
$200 Victoria Day
$200 Canada Day
$1,000 SB&H Anniversary
$200 Labour Day
$250 Thanksgiving
$200 Remembrance Day
$500 Holiday Giveaway
$750 Year End Special

Camping at Six Mile Lake

2011-08-24T12:30:00.000-07:00

We couldn't get a campsite at Mikisew or Killbear for our annual camping holiday this year, so we decided to try out Six Mile Lake. It was nice and close, in fact it took us only 1.5 hrs to get there, which is awesome when you have a child who doesn't like to be in a car (yes that means you Jesse!). I would definitely recommend it for a quick getaway, but not the greatest place for camping with a trailer. We actually lucked out with our campsite because it was amazing compared to the other sites. Really a weird set up with some campsites that you parked your car at the bottom and had to climb up to your site. And others that were just big opens spaces with no privacy. Ours took us almost 30 minutes to park in (weird angle) but other than that, it was lovely.

The beach was nice for families, with a big open space, lots of place to swim, picnic tables and a playground (which Jesse was obsessed with -- just kept saying big slide, big slide) near by.

Our week was fantastic with lots of swimming, hiking, biking, feeding chipmunks, fishing, watching the snake program, eating yummy pie irons and I just got to spend lots of time with the boys (mostly Jesse, Jake had found friends his age he wanted to hang out with).

It was a perfect vacation until the last 2 hours of the trip when I took a massive fall with Jesse. I'm still recovering from it and it happened almost a month ago. Thank goodness Jesse wasn't injured in the tumble

Here are some of my favorite pictures (Sorry there are a lot of them)


Jesse, Jake and Scaredy Feeding chipmunks


Ahhh, they are being nice to each other


Big Chute Marine Railway


Pretty falls, cannot remember the name of the town right now


Hiking at Six Mile Lake


Jesse and Jeff on our hike


Don't you just want to hug him, so adorable


Slave Jake and his Master Jesse

Before the fall (Sorry the picture of after are not pretty and will not be included)


Caught playing on the playground - hey I'm a hands on Mom


Jesse's favorite hangout while camping


Jake also enjoyed


Learning about Ontario Snakes


Jesse's 1st fish


Jeff's nemesis the snapping turtle who stalked him while fishing


Pie Irons, if you haven't had one before - its pure heaven


Daddy teaching Jesse how to fish (Jesse caught more than Jeff did that night)


Future Daredevil

Fergus Highland Games August 2011

2011-08-24T12:02:00.000-07:00

This wasn't as fun this year, since Jesse was in a seriously bad mood. Next year Jeff and I are going by ourselves. Well at least I got to eat my yearly Haggis Pie (Seriously its good!) and we all shared the Deep Fried Mars Bar - so bad but sooooo good. Also got to meet up with my mom's old crush Tom Leadbeater.

Here are a few pics


Jake, Miss Canada and some knight dude

The Knight asked Jake did his Mom teach him how to fight - nice eh?


Things would have been a lot more fun if he had done this earlier, not 15 minutes before we were going home!

Strapping Scottish boys throwing heavy shit - love it, love it!


More kilt wearing boys - yummy

Niagara Falls 2011

2011-08-24T11:51:00.000-07:00

Our Trip to Niagara Falls August 2011


Movieland Wax Museum - Harry Potter

Movieland Wax Museum - Simpsons (And Jake)

The reason why we ran through half of the Movieland Wax Museum (Freaked Jake out)

What Jesse and Daddy did while we were at museum


Check out the rainbow

Journey Behind the Falls Trip (Jeff is only 1 who had done it before)

Up close - but not stupid up close - people that is why there is a barrier - this is mother nature at its fiercest

Little daredevil


Love this pic - next time we are playing a game

Raffle Winners

2011-06-26T06:22:00.000-07:00

Just wanted to thank everyone for being so generous with donations and I wish you could have all won. All the prizes were picked out of a basket by Jake - he say's chocolate or itunes bribes would have changed the results LOL!

Raffle Winners

Scrapbooking Package - Dawne H.
Signed YA Pack - Maegan Best
YA Arc's - Kiera Watters
Kelley Armstrong - Jennifer Vallier
Mary Janice Davidson - Evil Andie
Naughty But Nice - Stacy's Books
Electronics - Clare Rayment
Middleschool - Kathy from Bolton
BestSellers - Sarah Hamil
Romance - Janice Guzik
Fiction Arc's - Melanie Windover
Jen's Fav's - Krisi Pontious
Picture Books - Natasha
Hair - Maria Soares
Gardening - Denise Rooney
Kobo - Casey Telford
Spa Pack - Elizabeth Best

Promotion

Lavender Lines - Choice of Signed Book
Leora Heilbronn- Choice of Signed Book

I will contact you all to get address' to mail out items -- well when Canada Post goes back to work

Garage Sale

2011-06-21T06:50:00.000-07:00

Garage Sale for Spina Bifida and Hydrocephalus

This year, we hope to have hundreds of people helping us make spina bifida and hydrocephalus household words.

When: Saturday June 25, 2011

Where: 108 Hickman St in Bolton

Time: 8:00 – 1:00

Items: Infant and Boys toys, furniture and clothes, Books, DVD’s, CD’s, crafts, women’s clothes and much more.

No REASONABLE offer will be refused

SPECTACULAR RAFFLE PRIZES

Lemonade stand, Coffee and sweets too!!!

All money raised to go towards the Spina Bifida and Hydrocephalus Association of Ontario

Donations can also be made online for Spina Bifida:

http://www.canadahelps.org/CharityProfilePage.aspx?CharityID=s10136

(Choose Donate Now and Under “Fund Designation” please choose “2011 SWWR - Jake’s Journey”)

Promoting Raffle Contest

2011-06-15T06:52:00.000-07:00

Ok kids, not selling very many tickets this year so I'm going to try and bribe you all to promote the Raffle

Anyone who promotes the raffle in any way - Blog Post, Twitter, Face-book will get an entry into the following contest. If you get someone to purchase a ticket, you get 5 entries into the contest. For those who have already done promotion just make a comment below and will put your name in

Here is the link to the Raffle Page: http://raymentspinabifida.blogspot.com/2011/05/spina-bifida-raffle.html

Will have a chance to win some prizes too. You even get to choose what you win.

Signed Bertrice Small

Signed Men of the Other-world by Kelley Armstrong

Signed Abandon by Meg Cabot

Signed Carte Blanche by Jeffrey Deaver

$20 Gift Card for Chapters or Tim Horton's (Or if you are American I will substitute something for you guys)

Ends June 26th
International

Jake's Journey - Spirit Wheel Walk Run 2011

2011-06-15T06:21:00.000-07:00

Well, it ended up after a dismal sounding weather report that Mother Nature heard my plea and sent us a beautiful day for the walk.

Here are some pics of the event which took place along the Caledon Trail on May 29, 2011

Caledon Enterprise Newspaper Article on Jake's Journey

The whole gang (except me taking pic)

Grandpa and Grandma Rayment walking too & they are in their 70/80's)

(Even Reggie and Archie the dogs joined in)

(2.5 yr old Jesse walked at least 4km & slept like the dead that night)

(Me at the half way point 5.5km down)

Check out some of the beautiful scenery

(This house is MASSIVE)

Jesse finally giving up and napping

Yup and that is Auntie Sheila teaching Jesse to be a dog

Pretty much everybody walked at least 6km - the only ones who made it the full 11km were Jeff, Holly, Bruce and Myself (Jesse too but he slept half the way back)

Thank you to the following people who helped make the event spectacular

Chef Talk Bistro & Catering Inc.
Tom Kumagai from Snap Caledon

And most of all thanks to the following participants -- you taking part means so much to us

Jennifer Rayment
Jeff Rayment
Jacob Rayment
Jesse Rayment
Pam Rayment
Cliff Rayment
Bruce Rayment
Holly Rayment
Simon Rayment
Sean Rayment
Karen Kltse
Steve Rayment
Sheila Rayment
Clare Rayment
Archie and Reggie Rayment
Tracy Gustaw
Carl Custaw
Tanya Gustaw
Noemia D'emilio
Gabriella D'emilio
Neala D'emilio
Carianne Neale
Brianna Neale
Graham Neale
Melanie Windover
Aria Windover
Callum Windover
Maria Soares
Austin Soares
Olivia Soares
Ana
Roger
Sole
Carlie
Pollyanna
Gina
Murray
Samantha
Sydney
Scotlyn
Phyllis Campbell
Natasha Armstrong
Richard Armstrong

Spina Bifida Raffle

2011-05-13T17:15:00.000-07:00

As most of you know my 1st born son, Jacob, was born with Spina Bifida. I won't go into much detail since you can find out more about our joys and tribulations of living with the challenges of Spina Bifida here

An organization called the Spina bifida and hydrocephalus association of Ontario has been an invaluable help to us on so many occasions that I take part in their annual Spirit Wheel Walk Run event each year. The work I do for the event will hopefully help pay them back for all the assistance they have provided to our family and other families just like us. Please give generously and just remember even $5 can help make a difference.

To thank people for donating to my annual Spirit Wheel Walk Run event I am hosting a raffle. For EVERY $5 you donate to the cause you can choose a chance to get one of the items listed in the form

I also want to thank all the generous author's, blogger's, publishers and companies that donated to this wonderful event. We couldn't have done this without you!

US and Canada (Sorry International unless you want to pay for shipping) only (unless otherwise mentioned.)

Raffle Ends June 20th, 2011

Online Payment

You can make your donations in person, or on the following SITE. Choose Donate NOW
and under Fund Designation choose 2011 SWWR: Jakes Journey (Rayment Family) THEY ACCEPT PAYPAL TOO! If you don't feel comfortable doing this please contact me at jrayment AT rogers DOT com and I will make other arrangements with you

Please fill out the following form AFTER you have made the donation. This raffle is separate from the donation form so just make the donation and than come back here. Canada Helps has nothing to do with the actual raffle. Also since I am not tech savy and could not figure out how to do multiple entries for one prize - if you donate over $5 and want all your raffle tickets to go to one prize only, put it in the comment box at the end of the form. (Form is at end of post)

PRIZES


Signed Kobo by Meg Cabot, Veronica Roth, Lauren Oliver & Jeremy Cammy


Nexxus Haircare (Worth $125)


Fido Motorola W3888 Cell Phone and Your Shape for Wii

Scrapbooking Pack - Worth Aprox $450

Gardening & Food Pack

Signed Naughty But Nice Pack (NC17)

Signed YA Pack


Signed Jen's Favorites Pack


Signed Kelley Armstrong + $15 Indigo Gift Card

Signed Mary Janice Davidson

Signed Romance Pack


Signed Best Sellers


Middle School Pack (3 Signed + Joel Sutherland book not shown)


YA ARC Pack (3 more books to come)


ARC Pack + $15 Indigo Gift Card

Picture Book Pack (Plus 3 more to come)

Please fill out the following form AFTER you have made the donation.
Loading...

Help and a Contest (Contest Info Updated)

2011-05-04T12:26:00.000-07:00

Any meaningful comments will be added to win a copy of Divergent signed by Veronica Roth - US/Canada Only - ends May 5th at Midnight (My birthday just in case you want to send me a handsome man for a present)

I need your help putting together Raffle Packages

The Following are some ideas I have for packages. Please give me your thoughts, or changes you would make and what you think about cost of raffle tickets

Anyone who makes meaningful comments/suggestions will be put into a draw for a free book w/swag. Please leave me your email, so I can contact you if you win. Either comment in the comment field or email me at contestmom AT hotmail DOT com

Thinking for cost of raffle - 1 Ticket for $5 or 3 for $10 (You get to choose where your ticket goes)

Thanks!

Jen's Favorite Package

Kobo signed by Cammy of Indigogreenroom, , Lauren Oliver, Veronica Roth & Meg Cabot + 2 $15 Gift Cards Indigo (Total = Aprox $180 value)

Book Package #1


Naugty but Nice Pack (Includes signed Bertrice Small books not shown and signed Jill Myles Book below)

Part of Pack above signed (plus swag)

Scrapbooking Package

Worth approximately $450

Electronics Package

Fido Moto W3888 Renew+ Cell Phone and Your Shape for Wii with Motion Tracking Camera (Worth Aprox $100)

Haircare Package

Worth Approximately $125

Gardening Food Package

Garden and Food Package (Worth Aprox $100)

Various Book Packages

Signed Kelley Armstrong books plus signed swag by Rachael Caine and Melissa Marr

YA Pack - All Signed (also includes Signed Bloody Valentine by Melissa De La Cruz - not pictured)

MaryJanice - ALL SIGNED

Middle School Pack - 3 Books Signed (Plus not shown signed book by Joel Sutherland)

Romance Package - All Signed


Bestsellers - ALL SIGNED

Picture Book Package (2 more books to come)


ARC Package

YA ARC Package


Various Fiction/Non Fiction Package #1

Various Fiction Package #2

Sighed Charlaine Harris + Signed Jeaniene Frost, Jennifer Estep, Marta Acosta see below)

Signed w/Charlaine Harris Pack


Signed


Signed

Easter Weekend

2011-04-27T07:11:00.000-07:00

I know I was going to ONLY post spina bifida related stuff here, but you know I can't seem to help myself. Here are some pictures from Easter Weekend

Toronto Zoo

Frickin Adorable Isn't He?

Best Buds (Brave Bird)


Pretty and oh so dignified Tiger

Jake hiding


Yup they are actually getting along


The Lookout Polar Bear

Honestly they are wrestling kids - thanks for the jinx Andie


Fancy Beaver Tail for Jake and Plain for the rest of us, thanks Indigogreenroom for giving me the craving

Pucks Farm


Jesse on his 1st Pony Ride


Jake riding his first horse


My Adorable Boys

We played in here for hours!!!!


Jesse on the train


Jake and Jeff on Ferris Wheel


Jesse and his bike from the Easter Bunny

Spirit Wheel Walk Run for Spina Bifda - 2011

2011-03-15T09:18:00.000-07:00

That's right kids, it's that time of year again -- the "charity whore" is back. Here are some of the facts and things we need for the 2011 Event. All money raised goes towards research and support for those living with the challenges of Spina Bifida

If you are interested in learning more here is my post from last years Spirit Wheel Walk Run

The Event

Date: May 29, 2011
Time: 1:00 to 3:00 (aprox)
Location: Caledon Trailway (Part of the Trans Canada Trail)
Distance: Up to 10KM - You can walk, run, bike or just come on out and cheer us on
Info on Spirit Wheel Walk Run from the Spina Bifida Association of Ontario

If you want a t-shirt, please give me a shout - They are $8

Anyone is welcome to join us -- and really hope you will. Let's make Spina Bifida a household name

We are currently looking for a food & beverage company to sponsor us with things like Pizza, snack bars and Water -- If you are interested or know someone that is -- please have them contact me at email listed below

Raffle

The raffles I had last year were a HUGE success, so I thought I would try it again -- but even BIGGER!

If anyone is interested in donating prizes for a raffle, please contact me at jrayment AT rogers DOT com. I will post details in a later post. I have already had a couple of authors agree to send me signed copies of their books which is very cool

Thanks in advance for your support and I will TRY not to bug you all too much this year

Extreme Makeover: Home Edition

2011-01-11T10:43:00.000-08:00

My Co-worker Denise passed this on to me. I haven't watched it yet (as the only link I can find is for the US only) but thought I would give you all a heads up

Grommesh Family (Link to Full Episode)

Description (From ABC website)

What could possibly be better than giving a deserving family a brand new home? How about giving TWO deserving families a brand new home?!
The Extreme Team is off to Moorhead, Minnesota to surprise the Grommesh family. Garrett Grommesh is a young boy who is paralyzed from the waist down. Think that's enough to stop this truly remarkable kid from doing great things? No way! Garrett's place would be fine for anyone who didn't need a wheelchair. So, he wants to pay it forward and give his house to the family of one of his classmates. Told ya he was remarkable!
The Hajdari family came to America from war-torn Kosovo. Arlinda Hajdari never looked upon Garrett as a kid in a wheelchair. She only ever saw him as her friend. Arlinda and her family have no idea Garrett wants to give them his home. And we have no idea if Ty and the team can actually build two new homes in just seven days!
Ty, Paul, Paige and Eduardo surprise the Grommesh family at an ice skating rink where Garrett plays hockey. The family runs an organization called Hope, Inc., which allows kids with disabilities to play sports in totally cool ways. More on that later. Right now, the Grommesh clan is off to the Bahamas while the Extreme Team jacks up their old house and moves it to a new location where it will eventually get some new owners.
Paul goes on covert mission to the FBI Academy in Quantico, Virginia. He's on the hunt for top secret plans to create a secret agent room for Garrett. Ty works on the master bedroom for Bill and Adair Grommesh. Paige wants to make a volleyball-inspired room for Garrett's sister, Peighton. Eduardo oversees things at the location of the Hajdari home build.
Remember the Hope, Inc. organization we mentioned earlier? Well, Ty lets the Grommesh family know that they are setting a world record by using the most people in wheelchairs to create a logo. Over 300 people cover a huge field to form the logo for Hope, Inc. The great news doesn't end there. The folks over at CVS pharmacy provide brand new custom wheelchairs for Hope, Inc. so they can break even more records in the future.
The Grommesh family returns from vacation where they meet up with the Hajdari family. They still have no idea they are about get the gift of Garrett's old newly-renovated home. Time to MOVE THAT BUS!
Tears flow as Garrett hands over the keys to his friend Arlinda. The good news keeps coming when both families learn that Concordia College is giving scholarships to all of the children. Now it's time for the Grommesh family to see their new home. So, let's MOVE THAT BUS...AGAIN!
Here's a breakdown of the new home:
• The beautiful two-story home features an amazing front garden area. New concrete covers the front area to provide Garrett with a smooth transition right up to the front door. There's also a sidewalk that stretches around the perimeter of the home.
• The inside has hardwood floors, wide open spaces and there's even an elevator that'll take Garrett to all the floors of the house. Things are looking up!
• The kitchen has all new accessories and a sink that's low enough for Garrett to reach. He may be the first kid ever that actually wants to do the dishes!
• Peighton's room is a volleyball player's dream with the words "bump," "set" and "spike" on the mirrors and a cushy round creation that pushes together as a bed and pulls apart to serve as a hangout spot.
• Garrett says going into his bedroom was like heading into outer space. Makes sense. After all, Garrett wants to someday be the first person to wheel across the surface of moon. The super-cool interactive 3D wall map should satisfy his desire to travel until he heads off to NASA.
• A finger-scanner allows Garrett entry into a secret room with a giant vault filled with all kinds of spy gadgets. Guess Paul's trip to Quantico really paid off!
• The master bedroom is perfect. Adair particularly loves the giant framed picture of her hand holding Bill's in front of a glistening lake.
• Chandeliers in the family's spacious new Hope, Inc. home office feature notes from some the organization's members stating what hope means to them. The office also has a gigantic framed photo of the record-breaking wheelchair-made Hope, Inc. logo.
• Water therapy is very important for someone with spina bifida , so a brand new pool complete with a mechanical chairlift device will assist Garrett anytime he wants to take a swim.
This new house will certainly make life a little easier for Garrett and his family. And this special young man's desire to pay it forward will certainly make life a whole lot better for his friend Arlinda and her family. Guess there's just one last thing to say. Welcome home, Grommesh family. Welcome home.

Pictures, etc: http://abc.go.com/shows/extreme-makeover-home-edition/photo-details/grommesh-family/660145

Gravol and the Children's Wish Foundation

2010-12-08T12:46:00.000-08:00

I just found out about this site for Gravol and I thought I would pass it on to you. They have lots of great information on Gravol and some links to access some fabulous tips and answers to tricky parenting questions. Gravol is sponsoring the Children's Wish Foundation which as most of you know is a Kick Ass charity. Go take a peek kiddies and remember Gravol is only to be used when your kids are sick and not when you need them to just sleep for a couple of damn hours -- not that I was ever tempted to do so (yes that is BS -- I was tempted on many, many occasions - but I have resisted so far) And NO I am not judging you if you have -- we parents have to stick together!

Gravol welcomes second year of Children's Wish Foundation

For More Information: http://smr.newswire.ca/en/gravol/gravol-welcomes-second-year-of-childrens-wish-foundation

Newest Addition to the Rayment Family

2010-11-15T08:09:00.000-08:00

My hubby finally gave in and let me get a Cat. It's been 6 years since we have had a Cat, and I have missed having one so much. So lets give a warm welcome to Oreo (We didn't name her, she came with the name) Sorry the pictures aren't great, but I just took them quickly this morning on the way to work. We are so happy since she is sleeping with Jake every night and it is making him more comfortable with going to sleep -- trust me -- bed time is hell with Jake. He is also responsible for making sure she has food and water and that her litter box is clean and this is doing wonders for his confidence -- and gets me out of having to clean up any more crap!

Oreo - 3 Months - November 15, 2010

Jumping in the Fall Leaves

2010-11-08T08:14:00.000-08:00

This is mostly just for family to check out, but if you are bored, here is a video of my 2 heathens playing in the leaves on Sunday. I love Jesse's evil laugh and it is nice to see the two of them playing together. And yup the older one is Jake who we were told would probably never walk -- take that Spina Bifida!

Thank Goodness It's Friday Lottery Calendar

2010-10-22T07:55:00.000-07:00

As many of you know I am the mom of a 9 year old boy who has Spina Bifida and I also write a blog about books and book reviews. Every year I sell charity lottery calenders to help raise funds for the SB&H: Spina Bifida and Hydrocephalus Association of Ontario. If you live in Ontario or know someone who would be interested, please pass on the information below. When purchasing if you wouldn't mind mentioning you heard about the calenders from the Rayment Family, so that they know that I am living up to my name as the "charity whore". Thanks from Jake and the rest of our Family

Don't forget you CAN WIN by buying at the same time as doing something good!

"Thank Goodness It's Friday" Lottery Calendar

Support a worthy cause and give a gift that keeps on giving throughout the year!

The 2011 “Thank Goodness It’s Friday” Lottery Calendar is now on SALE!
Not only is the calendar beautifully designed and functional but there is an added bonus - the opportunity to win cash prizes from $100-$1,000.
Buy several as gifts! The calendar is a unique gift for everyone on your holiday list from family members to colleagues and is a fantastic way to promote awareness of spina bifida and hydrocephalus in your community.
Calendars costs just $20. Proceeds support vital SB&H programs and services.
Become a calendar seller and help SB&H make this year’s calendar fundraiser the most successful yet!

Why BUY a Calendar?

Proceeds will assist children, youth and adults living with spina bifida and/or hydrocephalus across Ontario.
This beautifully designed calendar features the unique artwork of 12 children who are living with spina bifida and/or hydrocephalus. Every month is an interesting expression of their talents.
The calendar is an excellent way to inform friends, family and the community about spina bifida, hydrocephalus and the Association.
A great gift idea for the holiday season or just to show you’re thinking of someone.
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Another Family living with Spina Bifida

2010-08-25T11:16:00.000-07:00

Here is a letter I received from another family living with the struggles of Spina Bifida. If anyone else is interested in posting their stories, we would love to hear from you

Hello. My Name is Lisa, and I am 25 years old. My Brother, Jamie was born with Spina Bifida (Myleomeningeocele) and Hydrocephalus (also Arnold Chiari 2 malformation). He has social anxiety in most environments, and is very sensitive to loud noises (sometimes causing aggression - to deal with the automatic pain he can't control)

When my Mom found out that her baby had Spina Bifida, she was nine months pregnant. She had a very difficult time when discovering her baby would have health complications.

Jamie had surgery to close his spine shortly after birth, then had his first shunt insertion. Mom became worried about Jamie's breathing, so she notified the doctor, and the doctor said it must be croup. After a month, Jamie's breathing was getting worse. They later found out (the doctor misdiagnosed him) his shunt was infected and the doctor's then rectified the problem, yet the infection caused more irreparable damage.

Although the doctors didn't think Jamie was going to live that long, he is now 19. So although he has fought the odds, as of now, Jamie has chronic kidney damage stage three), he is on a feeding tube at night (to help him gain weight - he weighs 80 lbs), underwent two spine surgeries (to prevent further scoliosis), and needs to be catheterized every four hours. My Mother and I are his primary care givers, and it has been much more complicated lately.

My father has been an alcoholic for as long as I can remember, and it has gotten worse.

My mom and dad divorced when I was four, and then got back together (for the kids/to make things work situation), and had my brother when I was six. Dad continued to drink, while Mom did all the care giving. Mom and Dad have been from common law to separated for as long as I can remember, but Dad's drinking, verbal abuse and previous assaults on Mom has greatly affected my mother's decision to make things better.

She told Dad to leave in January of 2010 and he now spends his days drinking and partying with friends and neglecting the roles of father hood. He is not helping with bills, or any kind of care for Jamie, which in turn has left my Mom with nothing as she doesn't work because she has enough on her hands to take care of Jamie.

Just recently, Dad came out to pick up some things and intentionally pulled the plug on Mom's deep freezer (a week later she discovered that all of her frozen food was rotten and had to be thrown out). A few years back, Mom and Dad bought Jamie a golf cart for the yard, to have fun in, and the last time Dad came out, he sneakily cut the wires to the golf cart so it won't work. I don't know why he would do these things, but I can't change how he is.

I have lost all respect for my father, but wish him the best in life.

Mom is scared as she has no idea what the future holds. The house is up for sale as we speak and I truely hope things do get better for us.

Mom doesn't drive, so I moved closer to her into a small 1 bedroom apartment and am the main transportation to Jamie's hospital visits, doctor's appointments, and Mom's diabetic appointments too. I don't have much for a vehicle, but make do with what I have and what I can help with.

Sometimes I wish I didn't put my life on hold so I could have helped Mom and Jamie financially, however, I could not replace the time I have been able to spend with my brother since it is impossible to predict how long he has. I made a choice, I chose to put my career on hold to be with my family. Although sometimes I wish things could just be easier for us for once, I'll always love my Mom and brother very much and I just pray that things will get better for us.

Learning About SB: What is in that? The Latex Question

2010-07-27T13:07:00.000-07:00

From I want to learn about spina bifida

Learning About SB: What is in that? The Latex Question

Latex. Sometimes it seems like it is the centre of my universe. Everything we buy I turn over and look (most often in vain) for a component list and look for those words. Natural Rubber Latex (NRL). What is the big deal?

Children born with spina bifida are more likely to have a latex allergy. And it isn’t just a simple scratching allergy, but can be anaphylactic right away (throat swell up, can’t breathe, die – need an epi pen). So these children are under latex precautions. Pretty much that means that they have never had a reaction to latex, but that’s because they haven’t been exposed (enough). Like other allergies it may take many exposures before a reaction happens. While we are still under precaution it means that we don’t carry an epi-pen or medic alert bracelet, but we still keep away from it.

It was believed that 73% children with spina bifida have a latex allergy. At first it was because they were exposed to latex at such an early age with multiple operations. But since many hospitals go latex free, and Sick Kids in Toronto is one hospital, we’ve kept him from being exposed to latex through the hospital. So something about spina bifida makes them allergic to latex. I’ve tried to find research that says it is not related, that now that kids aren’t being exposed to latex at and after birth the rates of latex allergy went away. But there is no research that says that. So I’m pretty much outta luck there. It is very clear that spina bifida is a risk factor for developing a latex allergy.

If you remember I had my c-section latex-free to keep Nickolas from being exposed through my own surgery.

You’d think that it would be simple to keep away from latex. Not so much. It is everywhere. Really rubber is in so much stuff, to make it better, to make it stretchier or bouncier or more durable. So what do we look out for? There are lists available online. I like this one here. It is 4 pages long, things in the hospital and then things in the community. Pretty daunting when you are worried about everything else about spina bifida. This is just one more thing that is tossed on the pile, and you worry that it will topple everything over!

So what exactly has latex in it? First of all rubber gloves, balloons, condoms. OK we can stay away from those. Medical supplies are pretty clear about what contains latex. I’m not going to get into hospital and medical equipment with latex. But it gets a bit tricky when we look at things in the community. Tape, office supplies, balls, mats, gum, elastics, t-shirt logos, costumes, band aids, diapers, nipples, handle bars, mattresses, newsprint, lottery scratch tickets, soothers, toothbrushes, bungee cords, playgrounds, toys, water toys, bathing suits, goggles, and zipper storage bags. Are you dizzy yet? And that is just the quick list. There are a lot of alternatives as well. If you want to be very specific with latex allergies it can even go as far as being served food that was prepared with latex gloves, or being in a room with balloons or gloves as latex powder can become airborne.

There is also associated allergies with banana, avocado, chestnut, kiwi, pineapple, mango, passionfruit, strawberry, potato and pear.

Latex comes from the sap of rubber trees. The allergy comes from an immune reaction to proteins in the tree sap.

The allergic reaction is labelled as different types, from 1 (most severe) 4/5 (mild). Type 1 is the one associated with myelomeningocele (spina bifida). It can start off as itchy, watery eyes, sneezing, coughing and rash. But can also become life threatening with difficulty breathing and anaphylactic shock with a collapse of circulation system (pretty much your body decides to shut down).

Boy, isn’t this fun?! Natural rubber is the only thing that we are concerned with. Synthetic rubber, silicone, plastic, nitrile and vinyl are fine to use. Latex is required to be labelled on medical products. But for some reason no one sees the need to label community products. Even when a lot of the products I have looked at are latex free! It would be nice to know!!! For baby products Learning Curve, Kids II and Nuby are companies that I have contacted and have told me that their products are latex free, except for latex nipples.

There are still things that I have a bit of a heart-stop and think Oh God does that have latex in it? Usually around items in clothing and toys. This seems to be a fight that I will have to overcome, until the government decides to smarten up and be concerned about labelling products that have latex. (Do I sound bitter yet)

Sources:
http://www.spinabifidaassociation.org/site/c.liKWL7PLLrF/b.2700271/k.1779/Latex_Natural_Rubber_Allergy_in_Spina_Bifida.htm

http://en.wikipedia.org/wiki/Latex_allergy - and yes I know I used Wikipedia (which is usually evil) but it served it’s purpose today.

Learning about SB: Beyond Walking

2010-07-27T13:05:00.001-07:00

From I want to learn about spina bifida

Learning about SB: Beyond Walking

Will he walk? That is always the question that people ask when they learn about Spina bifida. And that is one of my first questions as well. We are lucky and everyone seems very confident that yes, he will walk. But how do we picture walking? Walking down the street like you and I walk? Walking with a limp? Walking with crutches and braces? Walking with a walker? All of those are walking. And if he needs to use a wheelchair – I’m ok with that (it’s easy to say that now – I’ve heard it’s very hard on the parents, but not so much on the children). Walking is NOT the be-all and end-all of life.

I found this picture that I think helps to show how walking can be affected by nerve damage. Nerves do not progress all the way down; some nerves go to the front of the leg, some to the back. Spinal nerves are what carry the messages to and from the brain and muscles. Thoracic nerves go to the chest, back and stomach, upper lumbar nerves (L1-L3) to the hips and thighs, lower lumbar nerves (L4-L5) to the knee and front of the lower leg and sacral nerves (S1-S3) to the ankles, feet, back of legs, buttocks, bladder and bowels.

Walking involves more than just nerves, there is mobility and sensation. Here is a common table that explains level of Spina bifida and walking:

This chart came from Understanding Spina Bifida booklet from Spina bifida team at Bloorview MacMillan Centre

What is needed for walking? There are a variety of different things that need to be all lined up for someone to walk. Balance, range of motion, control and power. This is (something that I am learning about as well, so I'm sorry if it's a little dry)
1. Balance, is that center of gravity of the spine, pelvis, hip, knee and foot.
2. Range of motion of the joints, how they move and ‘step’, and the hip is the most important part of walking.
3. Control is needed. I could go into all the muscles that are important for control of the hips, but what the information I have is at least a page long, and I find it hard to follow with talking about different names of muscles – so I’m not going into it – but what I have came from Hip Function Fact Sheet from Spina Bifida Association of America http://www.sbaa.org/.
4. Finally we look at power. This is more than power to control joints, but to actually push and pull muscles. Calf muscles and hip extensors are used, and are sent messages from the sacral level. Power to move may not move forward, but side to side to move forward –the shifting that you see to move forward. Whatever works.

But this all takes a lot of energy, and some things are more important than walking. I’ll even say it again. There are some things more important than walking.

The next time you take a step, just one. Stop and think about all of the things that your body is doing. The nerve impulses, how you flex a muscle and a joint. And how you do it without any effort at all. THIS is what everyone takes for granted.

We are not here yet, and we won't be thinking about walking for a while yet, we are still getting control of Nick's trunk and rolling before thinking about crawling and being upright and standing before even thinking about walking. But the question that everyone has (including us) when we talk about spina bifida is will he walk? Well it doesn't have a simple answer.

Picture http://www.improve-education.org/id52.html
http://www.spinabifidaassociation.org/site/c.liKWL7PLLrF/b.2700279/k.91AF/Hip_Function_and_Ambulation.htm

Learning About SB: Getting Things Out - Part 2

2010-07-27T13:04:00.000-07:00

Hmm guess where I got this from: I want to learn about spina bifida

Learning About SB: Getting Things Out - Part 2

Bladder and bowel problems. They kind of come together, makes sense, since the nerves that go to the bowels are the same level. Here is a picture of how the digestive system get their nerve supply. The nerves to the bowel, the small and large intestine, rectum and anus (internal and external sphincters and canal) are affected.
What does this mean specifically? First we need to review how the bowels work. The intestines are muscles that contract and relax so that the ummm waste products (i.e. poop) travels down to the rectum. Again here we talk about sphincters (those doors that open and close depending on the messages they get). These sphincters send and receive messages from the brain depending on what is outside their door. When the internal sphincter senses poop in the rectum it opens and the external sphincter controls when we (potty trained) poop.

I can try to be polite, but hey, we are talking poop here. I am a mom, poop is a very important part of my everyday world. Get over it.

So now that we have that over with, what about kids with spina bifida? The incontinence (no control over bladder/bowels) problem is not an issue for us at the moment – we get to wait a few years for that. With poor or little control of the sphincters, well, remember my door analogy. If the door just pops open sometimes, the room empties.

Nickolas is a baby and in diapers anyways. So we aren’t really worried about when he poops, it is if he poops. That brings us to the next part of how spina bifida affects the bowels. Nerve damage means that the brain and the body don`t communicate, the brain doesn`t realize that the rectum is full and the door doesn`t open when there is a `knock at the door’ (if you get what I mean).

Muscles are the last part of this picture. Muscles are what you use to push poop out, but with spina bifida also comes with weak stomach and pelvic muscles. So constipation is a problem. Poop just sits there, can`t move and becomes hard when water is reabsorbed by the body and then just gets harder to come out. An article I just read described constipation and spina bifida as increased colonic transit time. Like the Go Train is going to be late!

So what do you do to help these issues getting things out? The first step is fluid and diet. Prune was Nickolas’ second food, and luckily he likes it – because he gets it every day. Also increasing fibre. If that doesn’t work then you look at medications as well as massaging belly, bum to help things along.

I could actually go on and on about these issues. But I’m going to stop here. Once potty training is started there are a lot more toilet issues, but we aren’t there and so I’m not going any farther. I think little learning module has come very close to TMI (too much information). But at the same time, as an parent of a child going through this, there isn’t too much information.

Sorry I don`t have many pictures for this little learning post. You probably wouldn`t want any, and I did find pictures that show exactly what I was talking about.

The picture came from http://img136.imageshack.us/i/bigdigestivesystem12176.jpg/ and most of this information I got from http://www.mydr.com.au/babies-pregnancy/continence-in-spina-bifida-bladder-and-bowel and http://www.medscape.com/viewarticle/569470_7 and http://spinabifida.org/sb-info/bowel-continence

Learning About SB: Getting things out - part 1

2010-07-27T13:02:00.000-07:00

Another one from I want to learn about spina bifida

Learning About SB: Getting things out - part 1

When you learn about Spina bifida from the doctors you are told that there are a couple of different issues you will be looking at because of the damage to the nerves; mobility and bladder/bowel. Depending on what doctors you are talking to, they will spin it 2 different ways. Your child will be in diapers forever, or this is manageable. Manageable means cathing and an assortment of different poop strategies.

The nerves that go to the bladder and bowels are at the sacral level of the spinal cord. A lesion or damage that is above this area means that the nerve supply to the bladder and bowels are usually affected.

The nerve damage to the bladder leads to something called a neurogenic bladder. But really, what does this mean? The nerves can affect the bladder, the sphincter (the door to the bladder) and pressure.

The neurogenic bladder can do 2 different things. One is that the bladder is ‘lazy’ (this is my term), the bladder is limp and cannot squeeze urine out – like an elastic band that is stretched and can’t tighten up any more. This is where Nickolas is. When I cath Nickolas I can get anywhere from 5mL to 100 mL of urine. Pretty big for one little kid. What we worry about is urine that stays in the bladder because it doesn’t empty. The other is that the bladder is spastic or ‘hyper’. Urine isn’t stored at all and the bladder, but it is always emptying.

Catheterizing (for those who don’t know, and are interested) means that a small flexible tube goes through the urethra and into the bladder. There is a hole at the end of the tube that allows the urine to drain from the bladder. This is one of many things that seem to bother the parents a lot more than the kids. We’ve been doing it since Nickolas was born and it doesn’t look like we are going to be stopping anytime soon (but I can still hope). Nickolas doesn’t care, half of the time he laughs, plays kicks – hopefully missing my hand that is holding the catheter, and hopefully missing the bowl of urine.

The sphincter is a muscle that is the door to the bladder, it can be too tight or too loose, when it is tight you have problems opening up the door, and when it is too loose the door is always opening unannounced.

Pressure is the last thing that affects how kids pee. (If the bladder is a room, the sphincter is the door, than pressure if the wind from the window). Low pressure means that the bladder doesn’t completely empty, and high pressure means that urine can be forced into other ‘rooms of the house’, specifically the ureters and the kidneys.

Pretty much with a neurogenic bladder we want to make sure that the bladder is healthy. We want it to be emptied regularly and not get any infections or damage the kidneys. Incontinence, not being able to control your bladder emptying, we will tackle in the future, but right now, with 2 kids in diapers I am not even close to considering an approach. But there is a combination of ways that we can deal with this.

The main concerns about this way to ‘get things out’ are infections and kidneys. A urologist is our very own pee doctor and helps to monitor how everything is doing.

I was originally going to outline neurogenic bladder and bowels at the same time; but I think it’s too much. So stay tuned for Getting Things Out – Part 2

Most of this information came from my Spina bifida resource manual from Bloorview Children's rehab as well as
from http://www.mydr.com.au/babies-pregnancy/continence-in-spina-bifida-bladder-and-bowel

Pictures came from www.apparelyzed.com/bladder-function.html and http://www.aqavic.org.au/sci_facts/neurogenic_bowel.html

Learning About SB: Spina Bifida is a Package Deal

2010-07-27T13:01:00.000-07:00

Learning About SB: Spina Bifida is a Package Deal

Here is my module #2 in my spina bifida education month.

Spina Bifida is the birth defect that sets off a chain of other problems that make up the entire package. Spina bifida comes as a package deal. There are effects on the whole body. The spinal cord, the brain, the bladder and bowels, muscles and bones, and other medical problems.
I will talk about the bladder and bowel issues in another post; these issues develop because of nerve damage to the areas that go to the bladder and bowel. But the other most common ‘tag-alongs’ to Spina Bifida are problems in the brain, (chiari II malformation, hydrocephalus), as well as problems with the bones (feet, hips, spine).

So you aren’t looking at just the back-thing, there is a whole bunch of things that come with it. Luckily someone who has Spina bifida does not necessarily have all of those problems, and hopefully if they do, they don't all cause problems at once.

Nickolas has Chiari II malformation and hydrocephalus. Luckily his feet and hips are fine and he doesn’t have any orthopaedic problems. But the effects of Spina bifida can result in problems with joints, misshapen bones, hip problems and curving of the spine. If you are missing one of two (or more) of the building blocks the tower doesn’t necessarily stay straight.

In my last education post I discussed a bit about Spina bifida, but what about the other stuff?!

The spinal cord is only so long and when it comes out of the back, in the lesion, it pulls on the cord, which is attached to the brain, and the brain, specifically the cerebellum, is pulled down as well. This is called the Chiari II Malformation, it is the banana sign that is often noted on ultrasounds, along with the lemon sign (I’ve mentioned it before, but those radiologists must have had the munchies or something when they came up with the names of things.)

Considering the importance of the cerebellum (it is what makes you breathe among other things) – this freaks me out. But Chiari may be present and have no symptoms. The most common are problems are gagging easily as well as breathing problems or loss of upper body strength. There is a surgery (called a decompression) that can help if problems develop.

There are other types of Chiari malformation (type I – IV, but it is type II that is associated with Spina bifida). Interestingly Chiari malformation has been on recent TV shows this past season, specifically House and CSI.

Hydrocephalus occurs when the cerebral spinal fluid (CSF) cannot properly be absorbed by the body and starts to build up in the ventricles (pockets) of the brain, which makes them bigger. It is associated with Chiari because the brain tissue can block the normal flow of the spinal fluid. Spinal fluid surrounds the spinal cord and goes from the nerves and spinal cord to the brain and is then absorbed. But when the absorption of fluid is blocked it starts to enlarge the ventricles and put pressure on the brain. In babies the head is soft and so the head gets larger – that was how Nickolas’ hydrocephalus was discovered; his head grew 2.4 cm in 5 days! Once the skull fuses, kids and adults with hydrocephalus would get headaches (no kidding!) among a range of other symptoms. Even to the point of 'sunsetting' of the eyes because the pressure of the brain cause the eyes to look downwards.

Hydrocephalus is very common with Spina bifida. The most common ranges I've seen in research has been from 85-95% of people with Spina bifida also have hydrocephalus. It can develop inutero, or after the surgery, or really any time (but most common in the first year). In Nickolas’ case the hydrocephalus developed after his back was closed – before that - the system, think of it like a garden hose, had sprung a leak, so the pressure did not build up when it was blocked because there was a hole in the hose (the lesion). When the hole was closed (back closure surgery) the hose starts to build up pressure.

How painful does this picture look - can you imagine the pressure that would put on your head?! Where would the brain go when the insides start blowing up like that. It finds a way. But we really don't want to let it go that far. SHUNT HAPPENS.

But there is a treatment (not the perfect solution, but has worked well so far ***knock on wood**). To treat hydrocephalus a shunt is inserted in the brain (into the ventricles) that helps to take the extra fluid and ‘shunt’ or move it down into the abdomen where it can be absorbed by the body. Simple enough right? Yes as long as the shunt doesn’t get blocked or infected or just stops worked and so then needs a ‘revision’. Nick’s shunt is located above his right temple, in his hairline. (He was part of a study which helped to pick the right placement for the shunt by ultrasound). He also has a scar next to his belly button which is where the shunt ends.

Nickolas luckily did not have any problems with his feet or club feet, so I’m not going to go into this, other than mention that clubbed feet and other orthopaedic [bone] problems is very common with babies, children and adults with Spina bifida.

Hope you’ve learned something in this Spina bifida learning module. A lot of this information came from the MOMS study website that is being done in the States – investigating how intrauterine surgery affects the rates of needing a shunt or developing hydrocephalus. This information can be found here.

Learning About SB: The Repair

2010-07-27T12:59:00.000-07:00

Here is another post from Amanda's I want to learn about spina bifida

Learning About SB: The Repair

I have a lot of people asking me how they fixed his back, but I didn’t really know how to answer. Then I found some pictures.

When you are pregnant, you wonder about what will happen in those first few days after he is born. And the answer is major surgery. A way to fix his back, this surgery will fix his back, but will not fix the nerves. In fact that first surgery can actually damage the nerves – that is one of the risks. But really there isn’t a choice.

A baby that was born with spina bifida has part of their spinal cords outside of their body and that needs to be cared for and repaired. It is called a myelomeningecele repair (MMC repair for short). Nickolas had his first major surgery when he was less than 24 hours old, and this surgery lasted almost 6 hours. I didn’t really know how it was repaired other than they put the spinal cord back in and covered it with muscle and skin. Well I found a couple of good pictures and thought – huh – this is how it was repaired (you learn something every day). Even though I had an idea, it was helpful to see pictures.

I do not have a picture of Nickolas’ lesion, I never thought of it at the time and wasn’t able to visit anyways (the joys of H1N1). There are pictures you can view online, some are large, some are small. But really it only looks like that for the first 24 hours and then it is repaired.

Nickolas has quite a big scar. and one part of it got infected, so it didn't heal very well, he stayed on his belly for 6 weeks until it cleared. And that part now has an indent of scar tissue when it healed. I think his scar looks beautiful now. I’m amazed at the work of the doctors, and his plastic surgeon.

Pictures came from: http://www.seattlechildrens.org/medical-conditions/chromosomal-genetic-conditions/myelomeningocele/

Learning About SB: The Beginning

2010-07-27T12:57:00.000-07:00

Another post from Amanda's I want to learn about Spina Bifida

Learning About SB: The Beginning

There are a lot of questions when you find out about a prenatal diagnosis. There are the long range questions – will he walk, will he have friends, will he be happy, will he go to school? You want to know how this happened? Why this happened? I can’t really answers those, but I do know when.

28 days. That is how old the baby, the embryo, is when spina bifida happens. In the first 4 weeks, when the baby isn’t a baby, when it is an embryo smaller than anything you can imagine. THAT is the time things go wrong, when one tiny part of the tiny embryo does not fit together as neat as can be. A neural tube defect.

28 days, do we know why things went wrong? No. There are theories, folic acid, green tea, hot showers, genetics, bad luck, God’s plan and there may be a combination of many of these in the why’s.

Knowing when doesn't help anything. I could go into the whole folic acid thing - taking folic acid before you know you are pregnant. The importance of folic acid, but I was on folic acid and it still happened. But statistically yes, folic acid helps to decrease the chance of having a neural tube defect (i.e. spina bifida among other things).

I thought this was interesting to show when and how spina bifida occurs. and when I found the picture - I knew I had to post about it!

http://www.seattlechildrens.org/medical-conditions/chromosomal-genetic-conditions/myelomeningocele/

The picture came from http://www.mayoclinic.org/spina-bifida/enlargeimage2354.html

http://www.spinabifidamoms.com/graphics/med_eng/fig1eng.gif

Learning about SB: A mile-o-what?

2010-07-27T07:38:00.000-07:00

From Amanda Riddings I want to learn about spina bifida blog

Learning about SB: A mile-o-what?

This is my first 'Spina Bifida Education Module' to help educate friends and family about spina bifida. I hope that these 'modules' will be posted over the month of June in celebration of Spina Bifida month. But don't worry! I will continue to post about the kiddies as well!

A myelomeningecele (pronounced my-low-men-ning-guh-seal). This is typically what spina bifida refers to, and is the most common type of spina bifida (there are 3 different types – also a meningecele and occulta). A Myelomeningecele is the most damaging, and this is what Nickolas was born with. This long word is what was wrong with my baby boy. In the hospital they shortened it to a MMC. Nickolas had an MMC repair – a lot easier to write out a million times in nursing notes.

I do not have a picture or know what Nicikolas’ looked like (I couldn’t visit because I had H1N1 and it never occurred to me to ask someone to take a picture), but I’ve seen other childrens. I was told by the neurosurgeon that Nickolas’ was 3 cm in diameter, but his scar is rather large (S shaped) compared to other children’s that I’ve seen.

This picture shows that the bones of the spine have split and allowed a sac to come out. The sac contains spinal fluid, the spinal cord (nerves) and meninges (tissue that covers the cord) to stick out and be exposed. Surgery is done (in Nickolas’ case) within 24 hours to replace the sac and nerves in the back and cover it with skin (I was surprised but the skin and muscle keep it in place, no other bone was put to cover what is missing).

As you can imagine it is delicate and major surgery that these kids go through and recover (amazingly) within their first few days of life. Even after surgery there has been damage to the nerves that are not, and cannot be repaired. The amount of damage done and what is affected depends on what nerves were damaged and what nerves passed through. Typically the level of the lesion (the hole) can determine what function is affected, but children may function at a different level than their lesion.

And usually there is a chart that typically gives an idea of mobility future and need for assistance with walking that goes along with the picture.

Nickolas’ sac/lesion/level is S1 when they did the surgery. We are still waiting to see what level he will function at (or not – who needs labels to say what they can and cannot do).

So that is my first quick-start education module – hope you liked it.

The spinal picture and walking chart were taken from http://www.spinabifidamoms.com/english/about.html

The picture of the myelomeningocele came from http://health.allrefer.com/pictures-images/spina-bifida-degrees-of-severity.html

Spina Bifida Pamphlet

2010-07-27T07:29:00.000-07:00

Check out Amanda's INCREDIBLE pamphlet that she created (with help from the SB&H of course)

http://aboutspinabifida.blogspot.com/2010/07/pamphlet-sb.html

Video on from I want to learn about Spina Bifida

2010-07-27T07:27:00.000-07:00

Here is a post from Amanda Ridding's I want to learn about Spina Bifida blog

Excellent Video

Here is an excellent video of doctors who are participating in the MOMS study explaining spina bifida (myelomeningecele). The MOMS study stand for Management of Myelomeningocele Study and is in the US that is looking at the effects of prenatal surgery to repair the lesion. It has been going on for many years.

Pretty much at 25 weeks the mom (and baby) undergo surgery that would have been done on the baby within the first day or two to close the back. If you participate in the study you are randomly selected to either the postnatal surgery or the prenatal surgery group.

I found a video that is really excellent in explaining a myelomeningocele and everything that goes with it. If you are interested - please check it out!
http://www.chop.edu/video/moms/management-myelomeningocele-study.html?item=1

This video explains how the postnatal repair is done - this is the surgery that is done on every baby that is not participating in the study (as well)
http://www.chop.edu/video/moms/management-myelomeningocele-study.html?item=4

This video explains - and shows video - how the prenatal surgery is done. These pictures are amazing! It also reviews the risks and benefits of prenatal surgery
http://www.chop.edu/video/moms/management-myelomeningocele-study.html?item=5

The Ridding Family

2010-07-27T07:23:00.000-07:00

When I first started this blog, I wanted to to bring more attention to spina bifida and to some of the other families that are struggling with this disability as well. Thanks to the power of the Internet (that's right folks, the internet can be an amazing thing) I have met another family that are also living with the challenges of Spina Bifida. The next couple of posts are going to be taken directly from Amanda's website since I am so swamped. Amanda has done some spectacular educational posts on Spina Bifida and hydrocephalus that I wish were around when Jake was first diagnosed. I have a hard time reading her posts because it brings back so many memories. I also want to give her a hug each time I read them because I totally understand what she is going through

Enough about me -- Let me introduce you to Amanda Ridding and her lovely Family

From her profile on blogger:

I am a wife, mother, sister, daughter, friend, nurse, graduate and many other things. I enjoy and love my family; Kyle my spouse, and kiddies, Katheryn was born April 2008 and Nickolas was born November 2009. We are a happy and loving family who are journeying together with the diagnosis of spina bifida. Nickolas was born with spina bifida (S1) and hydrocephalus. We are sharing our stories and lives with others after I got Nickolas’ diagnosis when I was 22 weeks pregnant. . I have found that there are challenges and triumphs in my life. I have learned a lot from my children, they have shown me what faith, hope, love and joy truly means.

Ridding Family Blog
I Want to Learn about Spina Bifida

Ridding Family SWWR 2010

Nickolas (Adorable isn't he)

Spirit Wheel Walk Run for Spina Bifida - 2010

2010-06-29T07:47:00.000-07:00

Well another year is done. No more charity whoring for me until at least January 2011. We raised over $1400 for the Spina Bifida Association of Ontario thanks to the generous support of my friends, family, bloggers and a bunch of fantastic donations from my favorite authors. Most importantly we got out the word about what spina bifida is and brought attention to the challenges faced by those living with spina bifida and hydrocephalus

Thank you all for your generous support and for putting up with all my posts, conversations, emails, newsletters and phone calls -- you can once again take comfort that I won't be hitting you up for anything -- well until I start again in 2011. I want to do something different next year to raise money so I would love to hear some ideas and suggestions. Also would love a heads up on authors you would like me to contact next year.

As for all you authors who donated your books, I just want you to know how impressed and touched I am by your generosity. You are not only talented individuals you are truly decent people to do so much for someone you don't even know. I love you all and will now spend the rest of the year promoting your work so that I can selfishly keep you writing for my amusement and entertainment -- ok and for others to find out about your talents -- but really it is all for me ; )

Here are some pictures from this years event. We had to cut the walk short due to the crappy weather -- but hopefully we still brought some attention to the cause

For winners of the raffle please see here

No more charity crap ok Mom!

No more crying Jesse!

My sister Tracy

Natasha A.

Melanie and Natasha w/ their prizes

All the signed books & none for me ; (

Other prize table

The stragglers - the hot guy in yellow is my hubby!

yearly backside pic

Crazy Carianne!

My sister, brother in law and Jesse

Hiding from the rain before we left - waiting for last minute walkers

The End - another year done (I'm the soaked one in green & Jake is beside me looking sooo unimpressed)

2010 SWWR: Jake's Journey

2010-06-21T19:10:00.000-07:00

I cannot believe I didn't post the details about the walk this year -- life is just so crazy right now. Anyway enough whining -- here's the facts man

Jake's Journey - Spirit Wheel Walk Run 2010

Date: Saturday June 26, 2010
Time: 11:00 - 1:00

The walk this year starts at 108 Hickman St. We walk Hickman St to Hwy 50. Than proceed South on Hwy 50 to the McDonalds. We stop for a quick bite to eat and than walk back to 108 Hickman.

Anyone is welcome to join us -- and really hope you will. Let's make Spina Bifida a household name

If you would like to donate please go to CanadaHelps

Steps

Under the Charity Profile click on the Donate Now button
Choose Amount to donate
Donation Frequency: One time donation
Under Fund/Designation from the drop down menu choose "2010 SWWR: Jake's Journey"
Fill out rest of form and click on Continue
Continue with rest of process

Thank you for donating to this worthy cause and for those living with the challenges of Spina Bifida

If you have any questions or need further information please contact Jennifer Rayment

If you are interested I am also selling raffle tickets for signed books and other items at Rayment's Readings Rants and Ramblings

Here is a picture of my beautiful (and devilish) little Jake so you can put a face to Spina Bifida (Jake is the older boy in the picture)

Raffle for the Spina Bifida & Hydrocephalus Association of Ontario

2010-05-31T08:02:00.000-07:00

I'm such a spaz, just realized I hadn't actually posted the raffle on this blog. Here is all the info

Wasn't getting many donations so I have upped the anty. Will contact anyone who has entered so far if they want to make any changes. Great prizes everybody -- don't make the authors unhappy by not buying tickets for their books : )

Have also shortened the post since people were saying it was too frickin long.
US and Canada (Sorry International unless you want to pay for shipping) only unless otherwise mentioned.

Raffle ends June 26th

Hi Everyone

As most of you know my 1st born son, Jacob, was born with Spina Bifida. I won't go into much detail since you can find out more about our joys and tribulations of living with the challenges of Spina Bifida here

An organization called the Spina bifida and hydrocephalus association of Ontario has been an invaluable help to us on so many occasions that I take part in their annual Spirit Wheel Walk Run event each year. The work I do for the event will hopefully help pay them back for all the assistance they have provided to our family and other families just like us. Please give generously and just remember even $5 can help make a difference.

To thank people for donating to my annual Spirit Wheel Walk Run event I am hosting a raffle. For EVERY $5 you donate to the cause you can choose a chance to get one of the items listed in the form

I also want to thank all the generous author's, blogger's, publishers and companies that donated to this wonderful event. We couldn't have done this without you!

You can make your donations in person, or on the following site. Choose Donate NOW
and under Fund Designation choose 2010 SWWR: Jakes Journey (Rayment Family) THEY ACCEPT PAYPAL TOO!

Here are some of the pictures of the prizes. In some cases I have not yet received the actual item, so I have posted a generic picture of the item.

Item #1 Signed Books: Kelly Armstrong

Item #2 Signed Books: MJ Davidson

Item #3 Signed Illona Andrews (4 Books)

Item #4 YA Pack: Hunger Games, Catching Fire, Shiver (Signed) & Hush Hush (Signed)

Item #5 Jen's Fav's #1: Signed JK Beck ARC, 2 Signed Books by Bertrice Small and Jo Beverly

Item #6 Jen's Fav's #2: Charlaine Harris,Jeaniene Frost & Marta Acosta (All Signed)

Item #7 Men's Pack: Clint Eastwood Collection, Patrick Rothfuss (Signed) and Drew Hayden Taylor (Signed)

Item #8 Naughty but Nice: 2 Jill Myles, Bertrice Small & RG Alexander (All Signed)

Item #9 Helaine Becker Pack (All Signed) Picture not yet available

Item #10 Scholastic Kids Pack

Item #11 Library Baskets: Various Books & Cooking Items (contact me if you want details)

Item #12 A few of Jen's Favorite Things: Massage, Wine, Aloette Body products & books

Item #13 Kids Book Basket (contact me if you want details)

Item #14 Scrapbooking Pack (contact me if you want details)

Please fill out the following form AFTER you have made the donation. This raffle is separate from the donation form so just make the donation and than come back here. Canada Helps has nothing to do with the actual raffle. Also since I am not tech savy and could not figure out how to do multiple entries for one prize - if you donate over $5 and want all your raffle tickets to go to one prize only, put it in the comment box at the end of the form.

Put other daily promotion of raffle in comments section and will add to your total

Please pass this on to everyone you know!
Here is a pic of my boys

Jeff (I know he's a Habs fan, but I still love him), Jesse and Jacob at Zoo May 2010

More Prizes

2010-04-27T08:07:00.000-07:00

Here are some more of the prizes that have arrived

All items are signed by author EXCEPT for Catching Fire

1st shipment of raffle prizes

2010-04-21T12:57:00.000-07:00

I got my first shipment of prizes for the raffle. What do you think so far. All 3 books are signed by Bertrice Small and one is an ARC of her latest erotic novel Passionate Pleasures (Release August 2010). The main character is a Librarian!

Spirit Wheel Walk Run - 2010 Jakes Journey

2010-04-08T19:07:00.000-07:00

Hi Guys

Yup its that time of year again -- Jen becomes a charity whore for the Spina Bifida and Hydrocephalus Association of Ontario.

Today's post will be brief as I am just in the beginning stages of organizing the event. So far I have the date June 26th, 2010 and a great idea.

The raffles I had last year were a HUGE success, so I thought I would try it again -- but even BIGGER!

If anyone is interested in donating prizes for a raffle, please contact me at jrayment AT rogers DOT com. I will post details in a later post. I have already had a couple of authors agree to send me signed copies of their books which is very cool

Thanks in advance for your support and I will TRY not to bug you all too much this year

Conquering Fears

2010-03-11T08:50:00.000-08:00

Wow, I haven't posted in a long time on this blog. Ooops, have been too busy posting reviews at http://raymentsreadingsrantsandramblings.blogspot.com/

Jake has a lot of fears, so we are always talking about ways to overcome them. I have always been honest with him that everyone is scared of something even his mom (shut up Jeff, I'm ONLY afraid of Skiing, Driving and June Bugs). He is no different or a less of a person because of this. We've talked about how if you let the fear overcome you, it can take away from your enjoyment of life. I've always believed that "actions speak louder than words" so instead of just talking to him about fears, I thought I could show him an example of someone trying to overcome them. Yup that's right kids, Mom is taking one for the team. She is going to overcome her fear of downhill skiing (who the hell thought it was a good idea to go rushing down a steep hill with two sticks tied to their feet -- seriously how smart can that be) in front of a bunch of strangers, all for the benefit of her first born. Hmm, wonder if he appreciates it ; )

I will document this (hopefully not from a hospital bed) next week on this blog -- maybe even with humiliating pictures. Stay Tuned!

Fun times with Spina Bifida

2010-02-08T10:40:00.000-08:00

During our last visit to Bloorview Kids Rehab we discussed Jake's bathroom issues (I will post in detail when we get the report in the mail later in the month) and his use of ditropan (sp) and mirolax. Dr Church and Nurse Julia suggested that we once again measure his urine output. We had to do this a couple of months back but since I was on Mat leave still, it was no big deal and Jake and I made it into a fun sport. This time around it is a little more challenging since we have to have others involved in the process. Jake has an assistant at school who basically just reminds him to go to the bathroom every 2 hours. Now the poor women has to take him to the bathroom every 2 hours, weigh his pull up and than record the measurement of urine from what we call the Pee Hat. Fun times I tell you.

She has absolutely no problem with this which is why I totally adore her. I even threw in some hand cream for her, because I think she will be doing a lot more hand washing over the next week. Bloorview gave us 2 "pee hats", so he can leave one at school, but the other one has to be shared between us and the babysitter (Note next time ask for a third one). We have to do the same process every 2 hours that he is at home and the babysitter has to do it once at 4:00 (She is soooo not happy to be doing it)

After the week is up I have to create a chart and email it to Julia and than we can finally discuss wether we need to change the dosage on his meds.

Jake is at least having fun with it by trying to increase how many ML he urinates each time. Another positive note, I don't have to keep reminding him to go and he drinks a lot more water so that he can pee more.

A further positive note, is that means it is one more step closer to Jake not having to wear a diaper or a pull up. Honestly, Jake really doesn't care right now since he has never really been teased a lot about it, but I know as he gets older that will change. I know I have mentioned this a thousand times, but I am terrified that someone will call him names and kids won't want to play with him anymore. I want him to be out of diapers and the sooner the better.

Final Version of Letter

2010-01-25T08:06:00.000-08:00

On August 28, 2001 I recieved the Ultrasound that changed my life

I was nine months pregnant and loved every minute of it. I went in for a routine test to make sure that my baby was okay because he really wasn’t moving around a lot.

After it was all over the technician told me that my baby had spina bifida. I couldn’t believe it! I had taken folic acid for at least 6 months before I became pregnant to prevent having a baby with spina bifida. My husband and I were devastated and to make it all worse, my doctor was too busy to talk to us.

We couldn't wait. We called my sister-in-law who was a nurse at Sick Kids. “Saint Sheila” got us into the high risk pregnancy unit at Mount Sinai Hospital right away. The team explained the worst case scenario – my child would never walk unassisted, have no control of his bowels or bladder, have learning disabilities and suffer from hydrocephalus.

Two weeks later at 3:00 pm on September 11, 2001, Jacob Rayment was born. They took him away immediately and I didn’t get to see him until he was 2 hours old. The doctors said they would perform surgery the next morning to remove the lump on his back. Then they whisked him away again for further tests. When I finally got to see him that night, he was attached to all sorts of machines, but I was at last able to hold him. I was only allowed to spend a few minutes with him and that is when I first felt that overwhelming feeling of love that I had always heard about when you become a mother.

I didn’t get any sleep that night as I was worrying about this small helpless infant about to go through major surgery. The next morning, after anxiously waiting in the recovery room for 4 hours, his neurosurgeon came out and explained that Jake would be able to walk without much assistance and probably would not have hydrocephalus. However, he would not be able to go to the bathroom normally and would have learning disabilities. It was still scary, but so much better than we were originally told.

The next week my husband and I spent 24 hours a day at Sick Kids learning how to cope with our special needs child. We had to learn how to change his dressing and how to catheterize this tiny infant. We got by on very little sleep on the small couch in Jake’s room. Finally on day 5 Jake was taken off of the equipment and for the first time we were able to really hold him. Jake was discharged 7 days after he was born and that is when the real fun began.

The first few days home were really difficult – as every new parent knows. On top of no sleep we worried about how we going to manage with this new creature. We had to catheterize Jake every 2 hours, chart his fluid intake and output, change his dressing, and go to many, many doctors’ appointments. All this and I was now freefalling into postpartum depression. It was insane! Most of it is still a total blur.

Thankfully, we were given information about the Spina Bifida and Hydrocephalus Association of Ontario (SB&H). They have made all the difference to us – they were a wonderful source of understanding, kindness, support and education. Because of the exceptional staff at SB&H, for the first time we knew we weren't alone and that maybe, just maybe, Jake was going to have a full and rewarding life.

SB&H helped us understand Jake’s condition, what we might expect in the future and how we could help Jake become the very best he can be. They gave us a crash course about the complications of spina bifida. Later on we received information for Jake’s teachers that gave them strategies for teaching children with the learning disabilities that come with the condition. The Association also provided books depicting children with wheelchairs, crutches or braces that are just like other kids. It was good for Jake to see spina bifida portrayed so honestly and positively. You won’t find these books in most libraries but SB&H made them available.

Being a parent of a child with spina bifida comes with many challenges. I worry every night that someone will make him feel bad because of his disability and I will not be able to protect him. I honestly would give up my life to prevent this from ever happening to him. I love him with all my heart!!!

Jacob is an incredibly funny and resourceful child. I am grateful every day for his birth. He loves karate and is becoming extremely confident at downhill skiing. I am so proud of how well he is doing. He is also a fantastic brother to his baby brother, Jesse.

I’m not sure what the future holds and the struggles that are ahead for his education, bowel/bladder issues, mobility and so much more. But, I do know that SB&H will always be there for us. That gives us hope and there is nothing more important than that.

The Association needs the help of donors like you to continue their good work. I urge you to support SB&H with your gift $40, $60, $80, $100, or whatever you can afford at this time. Consider joining the Monthly Giving Club. Monthly giving is easy and convenient for you and it provides the Association with stable, predictable funds. It also reduces administrative costs. For just $10 a month you can provide wonderful books for children like Jake that help them understand their condition.

Please give generously. Your thoughtful gift will ensure that SB&H will be there when it matters most. Your donation now will enable them to continue delivering support, guidance and information to everyone in the province living with spina bifida and/or hydrocephalus. Since they do not receive government funding, they depend upon caring friends such as you to touch countless lives through your donations.

Thank you for taking the first step.

Sincerely,

Jennifer Rayment.

P.S.Please help us make dreams come true for so many
Mothers like Jennifer. They wish for their child to be happy and healthy.
That’s what it’s all about. Your gift will help.

Just a few pictures of the boys to show off

2010-01-20T10:32:00.000-08:00

Jake 1st day of School 2009 (Grade 3)

Jake Baseball 2009

Halloween 2009 (The geeks)

Damn, not another reader in this house!

Hmm -- glimpse of things to come

Jeff trying to trade Jake for the car

Damn, I am one hot looking kid - drool and all!

Jake's Sick Kids and MRI appointment

2010-01-19T13:14:00.000-08:00

Mostly putting this post in as a reminder to contact Dr Dirk's office to get a summary of the results for Jake's medical file

Jake went in for an MRI just before Christmas. He did AMAZING for his first MRI while being awake -- trust me staying still for Jake is something that is extremely hard for him. He was a trooper and only moved his head a couple of times -- the rest of his body -- Perfectly still!!

We went back in January to get the results with his neurosurgeon Dr Dirks at Sick Kids. I will post the technical stuff when I get the notes, but basically Jake is doing great. He has a longer spinal cord than so called "Normal kids" and he has very little reflexes. Normal stuff for a kid with a defect at the L5 S1. And the best news -- we don't have to have an appointment with Dr Dirks for 2 year (unless there are any changes of course) That is fantastic -- not that seeing Dr Dirks is hard cuz he is sort of cute -- and I love to see Diane (unit secretary) but it is great news for Jake! Note to self -- get the frickin records from Dr Dirks!

Draft of direct mail letter that the SB&H asked me to write.

2010-01-19T09:59:00.000-08:00

Hey

This is the draft copy of the letter that the SB&H wanted me to write. I will also post the final copy after Helen at the SB&H edits it. Also want to thank those who helped edit it and make it so much more coherent than my original rambling text. Would love to hear what you think

On August 28, 2001 I received the ultrasound that changed my life. Before this ultrasound I loved being pregnant. I didn’t have morning sickness, my hair was curly and I was just having a grand old time. I went in for a routine non-stress test because Jake really wasn’t moving around a lot – not that he moved around a lot before, but they just wanted to make sure he was okay.

During the test, the technician started to make me nervous by asking all sorts of weird questions about folic acid and other alarming questions. After it was all over the technician came out to tell me that my child has a Myelomeningocele (Spina Bifida) and that my doctor would speak with me soon. I couldn’t believe it. After all, I had taken folic acid for at least 6 months before I became pregnant and all the information I had seen said that would prevent me from having a child with Spina Bifida.My husband and I were devastated and to make it all worse, my doctor was too busy to talk to me and would call me in the morning.

Rather than wait, we called my sister-in-law, Sheila, who, at the time, was a nurse in the Urology department at Sick Kids. She was incredible and I will never be able to thank her enough for how much she helped us. Sheila was able to get us into the High Risk Pregnancy Unit at Mount Sinai right away and explained to us all she knew about spina bifida. The doctors and nurses in the Special Pregnancy unit were amazing. They explained what the worse case scenario was for Jake and how they were going to help us with everything. They explained everything in plain English and made sure we understood it all.

Two weeks later on September 11, 2001 at Mount Sinai, Jacob Rayment was born. He had surgery at Sick Kids to remove the bump on his back at 8:00 am the next morning. Dr. Dirks, his neurosurgeon did an awesome job and to this day still tells us how proud he is of the work he did on Jake.He explained that Jake's diagnosis was a lot better than they originally thought. We spent a week at Sick Kids hospital and than they sent us home. That’s when the real fun started.

The first few days home were hell – as every new parent knows. We just had a few extra worries on top of no sleep and what the hell are we doing with this new creature. We were taught to catheterize him every 2 hours, chart his intake and his output and to also change his dressing. We also had many doctors’ appointments at Sick Kids and Bloorview Kids Rehab. All this and I was now free falling into postpartum depression. It was insane! Most of it is still a total blur. However, the ambulatory nurse at Bloorview, Jenny Cooke, gave us some information on an association called the Spina Bifida and Hydrocephalus Association of Ontario (SBH). They have made all the difference to us. The SBH were a wonderful source of understanding, kindness, support and education. Because of the exceptional staff there, for the first time we knew we weren't alone and that maybe, just maybe, Jake was going to have a full and rewarding life. Well, at least much as he can expect with us as his parents!

Since that day, SB&H have helped us understand Jake’s condition, what we might expect in the future and how we can help Jake become the very best he could be. They gave us a crash course in Spina Bifida, Hydrocephalus, Attention Deficit Hyperactivity Disorder (ADHD), and all of the complications that go along with these conditions.The SB&H Resource Centre has also provided for us, and for Jake's teachers, a guide that educates teachers about spina bifida and hydrocephalus and gives them strategies for teaching children who have the types of learning disabilities that come with these conditions.

The SB&H also supports Kids on the Block, a puppet troupe that performs in schools to educate students about accepting disabilities and differences. The Kids on the Block "spina bifida" puppet helped to educate Jakes teachers and schoolmates about his disability, in a fun way. The SB&H also carries a wide range of children’s books where kids with wheelchairs, crutches or braces are portrayed just like other kids. It is good for Jake to see spina bifida portrayed so honestly and so positively. You probably won’t find these books in most libraries but SB&H makes them available to its members.

Being a parent of a child with spina bifida comes with many challenges. With Jake, his particular form of spina bifida (Lumosacral Myelodysplastic Lesion) has been both a blessing and a curse. Many children with spina bifida have a visible disability, but with Jake, at first glance, you cannot see an "obvious" disability.

The hardest part for Jake and us is that he is 8 and “still” wears a diaper because he has no sensation in his bowels and bladder and does not know when he has to go. Again, if he was in a wheelchair or wore braces, no one would ask us about it and he would not be teased about wearing a diaper.

I worry every night that eventually someone will make him feel bad because of his disability. We all know that without understanding and education, people can be cruel. He has been so lucky so far that no one has treated him badly, but I can’t help but worry that one day it will happen and I will not be able to protect him. I honestly would give up my life to prevent this from ever happening to him. Even though he drives me wacky (If you’re a mom with a kid with ADHD – you know what I mean) I love him with all my heart!!!

I’m not sure what the future holds and the struggles that are ahead for his education, bowel/bladder issues, mobility and so much more. But, I do know that the SB&H will always be there for us. That gives us hope and there is nothing more important than that.

Jacob is an incredibly funny and resourceful child. I am grateful every day for his birth. He loves karate and is becoming extremely confident at downhill skiing. I am so proud of how well he is doing. He is also a fantastic brother to his baby brother, Jesse. If you are interested in more about Jake and Spina Bifida check out: http://raymentspinabifida.blogspot.com/

For 33 years, SB&H has provided care, support, awareness and education through information for teachers and medical professionals, family support and peer-to-peer networking. They have a toll-free phone line and website that allows individuals across the province to seek support or information that they need, when they need it. The Association helps make the lives of people with spina bifida and hydrocephalus, and their families easier.

How can SB&H provide all of these programs and services? They do it with the help of donors like you. Please give as generously as you can.

We urge you to support SB&H with your gift of $35, $50, $75 or $100, or make a contribution through our Monthly Giving program.Your generosity will enable SB&H to give courage, strength and hope to other individuals and families dealing with the complex conditions of spina bifida and/or hydrocephalus.

Your support today could make all the difference in someone’s life.

Jake got his Brown belt in Karate

2010-01-12T09:14:00.000-08:00

Since Dr Dirks was so impressed that Jake is doing well at Karate and Skiing, I thought I would post some pictures. A lot of kids with Spina Bifida are unable to take part in most sports so this is a pretty big accomplishment for Jake.

Here is a picture of Jake getting his brown belt in December of 2009

Another non Spina Bifida post

2010-01-12T08:47:00.000-08:00

Sorry guys -- I know this isn't Spina Bifida related but I wanted to post the following.

http://www.bibliophilicbookblog.com/2009/12/ereader-anyone-you-choosei-knowagain.html

It is a great site and right now is sponsoring an excellent contest -- take a peak! I would really like to win this contest but I wish you all good luck as well

Haven't posted anything in a while since I have been so busy -- but now going to try and post more

Things that I am Grateful for!

2009-12-23T11:36:00.000-08:00

After a sleepless night last night obsessing over an awkward situation I have found myself in. (I heard second hand that one of my sons friends parents threatened to kill herself and her children and now I feel I need to bring it to attention to those who can help (cops) if the friend who told me won't do it) I started thinking about how lucky I am and since it is that time of year when everyone thinks about this sort of thing, I thought I would put down all of the things I am grateful for. I know I was only going to make this blog about Spina Bifida -- well I lied

This is what I am grateful for

That eventhough I have a little self esteem problem, I am still a cup half full kinda girl. I always try to find something positive no matter what is going on. Trust me its a great quality in a parent with special needs -- or lets face it any parent!
My boys Jake (sweet boy with a wicked sense of humour) and Jesse ( My little cherub with the devilish personality)
Jeff for putting up with my "Interesting" qualities for the last 18 years - & for helping making Jake and Jesse
Jake's gleeful and naughty laugh
The pure look of joy on Jesse's face when he gets the diaper off and runs for freedom
Mom and Dad - For always being there for us & for knowing that no matter what - they would always be there for us.
Dad- an extra shout out for him because he was so awesome. He had an amazing sense of humour and he truly cared for everyone. No one quite like him! He taught us about compassion and to always do the right thing, no matter how hard the challenge. Crap, I'm getting all weepy just thinking about how much I miss the quirky fellow.
Mom - For putting up with Dad and all his quirky habits and his extremely charitable nature
All my friends -- and you know who you are -- who put up with me warts and all. You know I love you!

Amanda - Her beautiful soul and wicked sense of humour
Natasha - Couldn't make it without her -- even with her lack of taste in movies
Carianne - Wise women with a wicked sense of humour and compassion. Also must mention she gives the best advice - with absolutely no bs!
Joan Kavanagh's damn fine Irish Tea, advice & just always being there
The extrordinary staff on Neurosurgery at Sick Kids and the staff at Bloorview MacMillan - who have helped us with Jake's Spina Bifida
SB&H - The outstanding staff - who help us and others dealing with the challenges of Spina Bifida.
My job in the library at Humber College -- well most days anyway. Love helping students at Ref Desk and AskON
Songs that make you cry (Hallelujah by Rufus Wainwrigh), tap your foot (Anything by Great Big Sea) or just make your heart burst (On my own from Les Miz)
The sound of an acoustic guitar being played while hanging around my parents kitchen
Snow -- well except for when I am stuck on a Go bus and it takes 2 hours to get from Humber College to Bolton
Falling asleep while listening to it rain
amalah . com - For making me laugh my ass off
Books - especially ones by Julie Kenner
Breakfast TV for keeping me up to date and entertained & for my crush on Frankie
Attractive actors who are just more than a pretty face: Nathan Fillion, Anthony Stewart Head, Kevin Kline
Joss Whedon - If you do not know who he is or have never watched his work -- you are less of a person ; ) Ok I really didnt like Dollhouse all that much but for him I tried!
Daniel Craig -- well except for when he has that cheesy stash
Chocolate, Baileys, Australian Merlot's
The Internet for helping me keeping in touch with all those I care about, helping make my job easier, letting me enter lots of contests with very little effort and for being able to make complete strangers read my ramblings
Glee - Quirky and show tunes, don't have to say more
HBO - For bringing us Dexter, Californication and True Love - Thanks you are forcing the networks to try and come up with something new
Those mornings where Jeff and the kids let me to sleep in -- Oh never mind that belongs in my fantasy world where I am married to Nathan Fillion and Anthony Stewart Head and Jake doesnt have Spina Bifida

Things I wish could be different -- but can't do anything about - so will not stress over

Jake's Spina Bifida
Mom and Dad both being gone
My lack of Ass -- seriously if I had one, clothes shopping woud be so much easier
My horrible singing voice

Merry Christmas Everyone!
Jen

This time it’s personal…

2009-12-21T04:51:00.000-08:00

This time it’s personal…

Letter for Current magazine

2009-08-02T14:15:00.000-07:00

Here is the Letter that I sent to the SB&H for their Current magazine and for their website.

This is the 2nd year we have taken part in the Spirit Wheel Walk Run and I am extremely proud of how hard my family, friends and I worked on this year’s event. At the beginning of this year Helen Sklarz asked me if I would like to volunteer my time as well in obtaining some prizes for the SWWR. I couldn’t say no since they have done so much for my family as well as for so many families living with the challenges of Spina Bifida and Hydrocephalus. It was challenging at times since I was busy with a newborn and quite frankly I was just not very good at asking for things. By the end of it though, I was a real pro at it and obtained some really cool prizes. My son even donated a prize he won from Breakfast Television, which made me feel really proud. I also have to say it was a life changing experience for me and I have now obtained a new nickname which I cannot mention since this is a family publication : ) If you want to learn more about my experience in helping with this event check out:
http://raymentspinabifida.blogspot.com/

We had an amazing time in this year’s event and raised $2000 for the SB&H. 16 of my friends and family joined in the walk this year and we walked 10km up Hwy 50 in Bolton. We proudly carried the SB&H banner and had tons of people honk at us or even stop to ask questions. It was an incredibly beautiful day and I am so blessed by all the incredible friends and family who took part in the event and those who supported us along the way. Hopefully next year we will raise even more money and help educate even more people about Spina Bifida and Hydrocephalus!

The main reason I take part in this yearly event is because my older son Jacob was born with spina bifida. We had only found about his condition when I was 38 weeks pregnant so we were pretty freaked out about the whole thing. My sister-in-law Sheila was a Urology Nurse at Sick Kids so she was able to point us in the right direction for help. One of her resources that she suggested was SB&H. Everyone there has been an amazing help in teaching us about Jake's condition and all the resources that we can access.

The other reason I took part in this event was to educate others about spina bifida and hydrocephalus. Since Jake was born you wouldn't believe the amount of insensitive questions and comments people have made about Jake and his SB. I used to get a little ticked off but now I use these situations to inform people about spina bifida, and hopefully they will pass on what they learned to others.

Jake's spina bifida has made things tough but at the same time it has made us all stronger and we have met so many amazing people. I truly believe in the motto “What doesn’t kill you makes you strong”

More Prizes

2009-06-13T16:44:00.001-07:00

Here are a few more of the prizes we have recieved. Some of the other prizes I dont have pictures for right now are:
2 Signed Books by Julie Kenner
Signed book by Bertrice Small
Signed book by Charlaine Harris
2 Books from Forresters Book Garden
4 Gift Cards for Walmart from Sarah Fleming Realty
XM Sattelite Radio package won from BT and donated by Jake
3 DVD's won from BT and donated by Me (Burn after Reading, The Women and Hamlet 2)
$25 Gift Card from Scholers Choice
3 $25 Gift Cards from M&M Meats
and maybe more to come : )

Breakfast Television

2009-06-13T11:33:00.001-07:00

Since Jake had to go to Sick Kids for his biannual appointment with his Neurosurgeon Dr Dirks on Monday June 8th Jake, we decided to go watch BT in person for fun. We had a great time and everyone was so amazing. They even talked to Jesse and Jake on air which was adorable. Jesse was his usual shameless self flirting with everyone and Jake was quite shy (for a change)

The staff who make the show run are incredible and made us feel very welcome. Kevin Frankish was awesome with Jake and let him take his picture. He even told Jake he was welcome to come visit ANYTIME -- he didnt even have to ask permission. Jesse is extremely smitten with April, Michelle and Janine (sp?) -- and I caught him checking out Tracey Moore's boobs -- the little flirt! We were not able to mention Spina Bifida on air, but I havent given up hope yet -- maybe Helen can get them to do an interview with someone at the SB&H for exposure.

I brought all the staff some of my goodies and passed on a Julie Kenner book to Jen for her to read. The only real disappointments of the day were that Dina wasnt there -- and we didn't get a picture of Frankie Flowers : ( All in all it was a fun time and we will definately go back when Jake has to go for an MRI in December. Here are a couple of pics

Spirit Wheel Walk Run 2009

2009-06-12T18:41:00.000-07:00

Well ladies and gents, my walks are done! I just want to thank all the wonderful -- and brave people who tackled the giant hill and the rest of the walk in Bolton. Its pretty late and I am typing this in Jesse's room while he slumbers, so this is just going to be a short blog -- More to come later. Here are some shots of my amazing friends and family at the walk. You guys are INCREDIBLE -- the J Rayments and all those living with Spina Bifida THANK YOU!!! I will have a final total around the end of June, but I think we made it pretty close to $2000 -- and that is WITHOUT getting on BT and talking about the walk. WE ROCK!

Garage Sale

2009-05-25T07:19:00.000-07:00

So far between the garage sale, lemonade stand and raffle tickets this weekend, we have raised an EXTRA $175 for the Spirit Wheel Walk Run

Basket Raffle

2009-05-21T07:17:00.001-07:00

Selling raffle tickets at my garage sale this Saturday to make more money for the walk

Here are pictures of the baskets that I am raffling off. If you are in the area come on by and try your luck. All proceeds go to the SB&H

Tickets are $2 or 3 for $5

BT: Breakfast Television

2009-05-17T05:45:00.000-07:00

Well, I sort of had some success with Breakfast Television. It wasn't exactly what I wanted, but it will have to do. On May 21st they will post information about the Spirit Wheel Walk Run, SB&H and my blog. They won't talk about it, but at least the information will be posted and read out loud -- hopefully the exposure will help!

Jake and I are also going to go on June 15th to see BT recorded in person. Jake is really looking forward to watching it live -- since I force him to watch it on TV every morning -- I know "I'm a bad mom" : ) After the filming we are off for his annual visit to Sick Kids and than a tour of the SB&H office. After all that is done "Auntie Holly" is going to take care of Jesse and me and Jake are off to the Science Centre -- the perfect place for a kid with ADHD and touching issues : )

Thanks BT!!!!

Garage Sale for SB&H and Toonies for Twins

2009-05-14T11:32:00.000-07:00

Date: May 23, 2009
Time: 8:00 am
Location: 108 and 114 Hickman St, Bolton

Baby and Childrens Clothes, Furniture, Toys
Children and Adult Clothes
Books, DVD's, VHS's and CD's
Clothes
Furniture

Charity Raffles
Coffee, Cookies, Muffins, Lemonade ETC

Come and spend and get great deals

All money divided between SB&H and Toonies for Twins
For more on Toonies for Twins
http://tooniesfortwins.blogspot.com/

Sleep Training

2009-05-14T07:27:00.000-07:00

I know I was only going to use this blog to talk about Spina Bifida and the SB&H Spirit Wheel Walk Run for Spina Bifida and Hydrocephalus, but I have to add a little blog about this. It's a parenting thing and it was something we had a big problem with Jake on this topic, so I figured what the heck (If I typed Hell -- I would have had to put a loonie in Jake's swear jar)

Let's talk about sleep training! Jake was almost 7.5 (yup only a couple of months ago) before he learned to put himself to sleep. Up until than we either stayed with him or had to come in every 10 minutes until he fell asleep from pure exhaustion. Well, there was no way in heck (lol) that this was going to happen with our newest master, Jesse. So since I knew I wasn't strong enough to train Jesse by myself, I decided to hire a professional to help us with this issue. I first heard about "Sleep Doula's" on BT (Breakfast Television) and I thought to myself -- wow I could use one of those (again paraphrasing because the thought I had to myself included swear words -- and I really dont want to give Jake any more money). So I checked out the website of the one they interviewed and when I saw the price I almost had a heart attack. Her price didnt even include the milage that I would have to pay for her to come to the boonies (Bolton). So since I am a professional (library technician) I decided to do what I do best and do some research into other sleep doulas. I found a women in Mississauga named Debbie and her company "Precious Moments" http://www.preciousmomentsdoula.ca/

She was the same price but didnt charge the extra for mileage, plus she just sounded a little more down to earth and less Sleep Policeish (I know its not a word). So I set up an appointment with her and she came by yesterday. Well, I tell you "IT WAS WORTH EVERY PENNY". She met with Jesse and me and asked about our schedule. She created a new schedule with us that was going to work better for all involved. Than she showed me all sorts of things that I should do that will help Jesse learn to put himself to sleep. Than we set in motion the routine that I would do to train him so I would no longer have to stress out at nap and bedtime. She explained that it was going to be tough but by about 5 days everything should work itself out. Honestly, I didnt believe her at first, but I figured I would give it a try.

Well, I won't lie -- the first 2 naps were hell on earth. The only way I got through it was by talking to her on the phone (part of the support) and yup thats right folks -- I grabbed Jake's DS and played me some Star Wars Lego. Mind numbing and addictive and maybe me totally toon out the very pissed off baby in the next room (He's used of crying and me being his bitch and come running).

But you know what it kept taking me less time and less crying to get him to sleep -- and its only been 1 and a half days. Last night was awesome too, he only woke up once and it only took us 20 minutes to get him to get back to sleep (I know that sounds like a long time, but its not) Jeff stayed awake with me while he screamed in the middle of the night and made me laugh (also helpful). We kept imagining out loud what Jesse's was really saying each time he cried. Again, I cannot tell you because it involved a lot of unappropriate terminology that would have me paying ALOT of money to the swear jar.

So guys, if your kiddies are having sleep issues (sorry she doesnt train Hubby's) give her a call, she will save your sanity (and your wallet from having to buy all that alcohol to get through stressful bedtimes -- damn why didnt I know about her 7 years ago)

Thats it -- won't be doing much blogging for the next couple of days because of this training. The computer is in Jesse's bedroom and I do not want to bother him when he is sleeping. Hmm, think I will get Jeff to move the computer tonight -- I may go through withdrawal symptoms if I cannot Twitter when I wan't : )

Who says Spina Bifida isn't fun

2009-05-13T05:55:00.000-07:00

Jake has been having tons of fun peeing into the bedpan (see post on Bloorview). The bedpan is sort of like a measuring cup for the toilet. We have to mark down how much he pees everytime he sits on the toilet. Well, he's turned it into a game. He wants to break his record of 250ml! I only have to ask him once to go sit on the toilet -- normally I have to nag and nag and nag some more. Sometimes he even asks if its time to go to the bathroom (because of spina bifida he doesnt know when he has to go). Too bad we couldnt have tried this years ago -- I would have been so less stressed -- and saved a fortune since I wouldnt have to have gone through so much red wine to destress (joke)

For those who want to join in the walk

2009-05-11T08:13:00.001-07:00

Saturday June 6, 2009

12:00

Starts at 108 Hickman St in Bolton (Give me a call for directions). We walk down Hickman St and than up Hwy 50 to the McDonalds. Quick rest stop at McDonalds and for those interested we will walk back to 108 Hickman ST

Distance: 3.5 K to McDonalds or 7K return

905-951-2029

Give me a call if you are interested

Jen

Bloorview Kids Rehab

2009-05-08T18:49:00.000-07:00

Well, it was Jake's biannual visit to Bloorview Kids Rehab today

I know I have talked about this before, but its something I have always been good at. Turning a negative thing into a positive one. Jake's diagnosis really sucks and he is going to have to deal with a lot of tough issues but I think it will make him a stronger person. I know this whole situation has turned me into a much better person (and way less shy and sweet I tell ya). Those who know me, know that my favourite expression is "what doesn't kill you makes you strong". I really truly have come to belive that since Jakes birth on September 11, 2001 -- hell of a birthday eh.

One of these positive things is all the extrordinary people from various medical communities that we have met because of Jake. One of our favourites has been Dr. Biggar at Bloorview. Unfortunately for us, Dr Biggar is slowly retiring, and he wasn't at the Bloorview clinic today. We missed him, but his replacement Dr Church seems to be another exceptional person. She really made Jake feel comfortable today about talking about some of his bowel and bladder issues. She was also really patient with all of our questions and just very down to earth. Also a shout out to nurse Julia too -- she always explains things without medical jargon -- trust me a very good skill to have.

Today was the appointment that we knew would have to come someday. Now that Jake is no longer constipated all the time (Sorry for those easily grossed out, time for you to leave) it is time for him to start a bowel and bladder program so that he no longer has to wear pull ups. I will try not to go into much detail because hey who really wants to talk about these sorts of things, if you dont have too. I just want people to know of some of the issues that people with spina bifida have to deal with.

The first step to get Jake out of his pull ups is to start by measuring out how much pee he has each day before we start him on his new medication. Yup boys and girls he has to sit on the toilet with a bedpan underneath that measures out in ml how much he pees. I than have to chart how much he pees each time he sits on the potty for 2 days. After the 2 days are over we have to start giving him Ditropan(sp). Than once again we have to measure out how much he pees each day and chart that as well. If he cannot pee within 8 hours of first taking the medication -- we will have to catheterize him. If that doesnt work and his tummy becomes distended we have to take him to emerg! Fun stuff -- definately will be having a couple of stiff drinks after the boys go to bed --hmm never done drugs before but thinking now might be the time to start -- joking btw!

I also than have to call nurse Julia after a couple of days to discuss pee and poop. Yup a 30 minute conversation about the colour and amounts of urine with some exciting dialogue about shapes and colours of bowel movements. You can see how we dont get asked to many dinner parties. Hopefully the medication will work and we wont have to get him into self catherization(Sp) routine -- I dont even want to think how stressful that would be for him.

Now I have to talk to his school because with the new medication he will have to go on a bathroom schedule where he has to go to the bathroom every 2 hours and try to get all the urine out. That should be lots of fun. They dont seem to understand that Jake has a real disability. To them he looks like every other kid and they sort of forget that he needs extra help. Anyone with a special needs child, you WILL have to learn to fight with the school boards. Extra help for these kids = extra money out of the school boards and the government. Hmmm seems I am a little bitter on this right now, hopefully by Tuesday when we have to sit down and talk about it I will be more pleasant -- cross your fingers.

I am probably leaving tons of stuff out -- but its been a long and emotionally stressful day. Also I hope this makes sense since I am writing this while sipping from a HUGE glass of wine. Please send comments on any mistakes or things that I need to clarify.

Here is some actually well written material on Bowel and Bladder issues in those with Spina Bifida.
http://www.sbhasa.ca/MedicalQA/bowel_bladder.htm

If you need further information please contact me and I will point you in the right direction -- I am a library technician and I am damn good at helping people find what they need : )

Night all!

Basket from the Albion Bolton Public Library

2009-05-08T14:47:00.000-07:00

Hey Guys

Take a look at the wonderful basket that the Albion Bolton Public Library donated as a prize for the Spirit Wheel Walk Run. Check out the library sometime -- I know I am predjudice since I am a library tech -- but these ladies are really awesome. Fun to chat with -- that's why hubby NEVER believes me when I say I am only going in for a sec : )

Thanks Scholastics

2009-05-07T17:01:00.000-07:00

Here is the picture of the Scholastics prize. Jake says he wants the star wars book -- and me being the charity w***e I am -- told him to go get lots of pledges! : ) I wont repeat what he said.

Still Need

2009-05-06T05:03:00.000-07:00

Hi Everyone

Some of you have been asking what we still need. Here is the list:

Prizes for participants
Pledges for my walk under Jennifer Rayment or Journey for Jake
Promotion of the walk in Newspapers and especially on Breakfast Television
People to take part in my walks at Humber College (June 5th) and Bolton (June 6th)

Please contact me if you can help in anyway

Jen

Special Needs Poem

2009-05-04T15:35:00.000-07:00

WELCOME TO HOLLAND
byEmily Perl Kingsley.c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland.""Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."But there's been a change in the flight plan. They've landed in Holland and there you must stay.The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

OK, lets talk about Postpartum Depression

2009-05-04T15:34:00.000-07:00

1st of all it is nothing to be ashamed of – it happens to more people than you think. My mother in law says there were tons of women with in when they were new moms -- but they just drank instead of getting medical help : )

I had it with Jake and it is a horrible thing. I was lucky in one way that I never wanted to kill him – I just wanted to kill myself. Our warped Rayment sense of humour helped me get through some of the tough times, but I also had wonderful friends, family and Effexor.

I imagine many moms who have had children that are considered disabled have probably had it as well. It’s a tough thing realizing your child will always be a little bit different.

If you are new mom and feeling overwhelmed, want to hurt yourself or your child. Go tell someone and get the help you need. There is nothing to be ashamed of and you are a better mom for getting the help YOU need. Trust me it sucked having PPD – but I am a better person because of it.

Now the not so nice part – it is HARD to come off of anti depressants and NEVER do it without medical help. I’m going through the hardest part now because after 7 years I am almost completely off it and am going through what I guess is sort of like withdrawal symptoms. Its tough, but I’m doing it – with advice from Dr and Naturopath. Wish me luck – and well “Do not piss me off right now – trust me!!”

Some helpful websites about PPD – but if you feel that you might have it – go straight away and see someone!! There are tons more sites that your health care professional can provide you with.

http://www.phac-aspc.gc.ca/mh-sm/preg_dep-eng.php
http://www.cmha.ca/bins/content_page.asp?cid=3-86-87-88
http://www.postpartum.org/supportgroups.html

Helpful advice
Go to your local Parent Child Centre and make friends with other moms
Join any Mommy and Baby group and make friends with other moms
Hmmm go make friends with other moms!!!!!!
Ignore any advice from Tom Cruise on PPD
Don’t be ashamed to ask for help.
Do something once a day for yourself (eg take a bath, read a book, throw darts at picture of Tom Cruise)

Can’t thing of anything else right now –more later. Off to run on treadmill – helps with the withdrawal from Effexor – also good for heart and rest of body.

Basket from Mars Canada

2009-05-01T12:07:00.000-07:00

Hi Everyone

Here is the prize that Mars Canada donated.

Thanks!

2009-05-01T05:02:00.000-07:00

Thanks to a very generous donation by my massage therapist "goddess Joanne" we have now raised $998 so far. Close to my original goal of $1000. Now upping that goal to $1500 -- lets see if I can do it

http://www.sbhao.on.ca/events-swrr09.asp

Remember to mention my name when you donate: Jennifer Rayment or "Journey for Jake"

My Flyer

2009-04-30T05:59:00.001-07:00

Need opinions -- what do you think? Some of the formatting doesnt work on the blog -- but this is general idea

2nd Annual SB&H Spirit Wheel Walk Run

The Spirit Wheel Walk Run (SWWR) is a grassroots fundraising and awareness event, taking place in communities across Ontario this June.
The event is for our members and their families, volunteers as well as individuals interested in raising support for SB&H programs and services. Participate in your community by customizing a walk that's just right for you. Select any day during the month of June, in a location near you. Walk with your family, pets and friends, on your own time and for any distance you choose. It's easy.
This year, we hope to have hundreds of people helping us make spina bifida and hydrocephalus household words.
When: June 6, 2009

Where: Starting at 108 Hickman St in Bolton

Time: 1:00

Donations: Cash and Cheques (payable to SB&H) can be sent to:

Jennifer Rayment
108 Hickman St
Bolton, ON
L7E 2P3

Or can be dropped off the day of the walk

Donations can also me made online at:

http://www.sbhao.on.ca/events-swrr09.asp
https://www.canadahelps.org/DonationDetails.aspx

(Under “Fund Designation” please choose “Spirit Wheel Walk Run” and Jennifer Rayment in box underneath)

Credit card donations can be made over the phone at 1-800-387-1575 or 416-214-1056 – Please specify Jennifer Rayment as name of participant

What we need

2009-04-30T04:07:00.000-07:00

Hi Everyone A lot of people have been asking what exactly we are looking for, so here's the answer

Donation of free product coupons such as: Free slice of pizza, free coffee, free bottle of water, free foot cream, etc

Prizes: Gift Cards would be best from companies such as Walmart, Chapters, McDonalds, Tim Hortons, HomeSense, Home Depot, Sportcheck etcDonations of Cash in order to buy 150 $2 Tim Cards

Also looking for pledges for my personal walk. Donations can be sent to me personally or you can use your credit card online. I will provide the info to those who are interested. You can contact me at jrayment@rogers.com

WOW!!

2009-04-29T16:03:00.001-07:00

Today was an AMAZING day -- 1st Jake had a great day at school -- phew. Those of you that are parents of kids with ADHD you understand that a great day at school -- is a rare thing : )
And my other incredible news is that 2 of my favourite authors are donating a signed copy of one of their books for prizes. This is wonderful and very generous. Also I was shocked by how quickly they replied to me. Now most of those who know me -- know how much I love both of these authors -- but for those who don't -- you have to read their stuff.
Bertrice Small - Mostly historical romance novels and some erotica. Excellent storyteller -- and historically accurate which is a big thing for me. My friend Melissa got me addicted to her in College and I now own all but I think 2 of her novels (missing a couple of the naughty books which are harder to find in repressed Bolton). Take a looksy into her novels - I know you will not be disappointed!
http://www.bertricesmall.net/ She also has a monthly contest for those who are interested.
Julie Kenner - I cannot say enough nice things about this author. Her novels are hilarious and I dare you not to laugh out loud at some of her writing. I cannot remember what magazine I read that mentioned her book "Carpe Demon" but it sounded like a fun novel so I picked it up. It was sort of like if Buffy the vampire slayer had grown up and moved to the suburbs. After I finished it -- I went straight to amazon.ca and picked up everything else she had written. Have not been disappointed yet. From reading her blog I also would have to say she is an amazing women with a GREAT sense of humor. Check her out at http://www.juliekenner.com/ Don't forget to look at her blog too
So feeling pretty good now -- think I will have luck with my 3rd fav author -- Stephen King : ) Yup, I'm thinkin probably not too -- but I am going to try -- "Never give up, Never Surrender"
Hey I can always tell him how I made Jeff drive out of our way to Bangor, Maine on the way home from a wedding in New Brunswick (as Jeff would say 8 hours out of our way) just to take a picture of his house and stop at the local bookstore which specializes in his stuff. Went to the book store, took a few pictures of fictional landmarks, took a picture of his house and drove off. Never bothered him at all -- think he would appreciate that?
If anyone knows his email address -- give me a shout!

HB Fenn Rocks!

2009-04-29T12:47:00.000-07:00

I got the gift package from HB Fenn in Bolton yesterday and it is AWESOME. Three stunning Gordon Ramsay cookbooks (Yup and I have to give them away -- I love that Gordon!). HB Fenn really outdid themselves. Ok this is great motivation for all of you to raise some cash!

Off topic -- there won't be much work done this week-- Its official Jesse has the chicken pox -- and he is soooo not happy about it. He screamed for 25 minutes this morning until he passed out from exhaustion - -- made me miss most of BT (Ok but I did PVR it) He looks so sad!

Great kids book on Spina Bifida

2009-04-29T12:43:00.000-07:00

http://www.myspinabifidabook.org/

Thanks Elizabeth

2009-04-29T12:42:00.001-07:00

Just wanted to give a shout out to Elizabeth of "A Scrapbookers Dream" This is the awesome prize pack they donated as a prize. Thanks Elizabeth You Rock!! We really appreciate your generosity.

Check out their website at: http://www.ascrapbookersdream.com/

Way to go Mars and Scholastics

2009-04-29T12:41:00.001-07:00

Just a quick thank you to Mars Canada Inc (from Bolton) who is donating one or two baskets of chocolate for a prize. I will be picking them up on Friday so I will post a picture of the basket(s) then. Scholastics Canada also sent us a prize pack which they sent directly to the SB&H. I will see if Helen can take a picture of it so that I can post it as well. Now I have to work on posters, thank you cards and a letter to our local paper. Have to say I am looking forward to the walk being over so I can go back to keeping my house a little cleaner -- yeah right -- more like get back to some recreational reading. Stil no luck on BT but I have not given up!!!!

Love to hear some other stories

2009-04-29T12:40:00.000-07:00

HI Everyone
I would love to hear from some other families and their stories of living with Spina Bifida. If you are interested give me an email and I will post your story on the blog.
you can contact me by the email on my profile page or at contestmom@hotmail.com
Lets promote awareness of Spina Bifida and Hydrocephalus!!
Oh yeah and if anyone knows anyone at BT or City TV -- pass on this link to bring some attention to this awesome charity event!

I am Shameless

2009-04-29T12:39:00.000-07:00

So now I will have to officially name this blog: Confessions of a Charity Whore
As usual I was watching BT this morning and to my amazement there was Jennifer Valentyne at the RockStar in Bolton. So I got Jake off to School, and than Jesse and I jumped into a cab and headed up to the RockStar. I waited to talk to Jennifer in person so that I could give her all the info about the Spirit Wheel Walk Run. I also made one of my handmade buckets filled with Chocolate so that she would remember me and hopefully promote the blog and the Spirit Wheel Walk Run. BTW, she is even more beautiful in person. I also watched her with people and she was extremely approachable and a lot of fun. People really were impressed with her. I was also shameless by dressing up Jesse in his elmer fudd hat so that she would notice him -- I know I am such a bad Mom : ) Jen was really helpful and told me to email the station and have them put up the event in their "Pause for the Cause segment". Jeff suggested that I get the BT Crew to join in the walk -- what do you think - I wonder if they would go for it -- Worth a try

Here's a picture of my future"Womanizer" and Jen

Great Prize Day

2009-04-29T12:38:00.002-07:00

Well, eventhough Jesse was cranky and keeping me busy all day -- I did at least get some great prizes for the Spirit Wheel Walk Run
The local Dairy Queen is donating some cash -- will post more about that when I pick it up tomorrow.
My favourite book store - Forester's Book Garden in Bolton has donated some kids books. If you get a chance drop on by this awesome store. The owners are fun and know everything about books and authors (hey I am a Library Technician -- this is an important thing for me). They also do a lot of promotion on local authors such as my fav Humber professor John Steckley!!! They also have the most adorable dog who is always in the store. They are definately worth the drive to Bolton
And last but not least my favourite real estate agent Sarah Fleming dropped off 4 $50 gift cards for Walmart. Sarah is a fantastic real estate agent (not pushy, knows her stuff) and just a fun sweet lady. Honestly, I really admire her and highly recommend her as an agent. She does everything to help you find a place and to sell your place for as much as she can -- she also doesn't suger coat stuff -- which for those who know me -- is a quality I admire.
BTW -- the above comments are not just because they donated stuff -- I just wanted you to know a little more about them.
Also if you are looking for a real estate agent, give Sarah a shout -- you will not regret it - GUARANTEED BY ME.
http://www.flemingrealtyinc.ca/
Well thats it for me tonight -- too tired to write anything else. Cross your fingers that Jesse doesn't have me keep putting the soother in his mouth all night

Fun with Spina Bifida

2009-04-29T12:38:00.001-07:00

Ok sarcasm is alive and well in the Rayment family. This is a bit hard to write about since today has been a good day, but I have to do this now. Jeff is watching Heroes (missed way too many episodes to make any sense of that show) and both of the rugrats are asleep so I have a few seconds.

Being a parent of a child with spina bifida comes with many challenges. The following comments do not apply to all children with Spina Bifida since this neural tube defect affect individuals in different ways – these are just some issues that we have dealt with Jake.

Jake’s particular form of Spina Bifida (Lumosacral myelodysplastic Lesion) has been both a blessing and a curse. Many children with Spina bifida have an obvious disability, but with Jake at first glance you cannot see any “obvious” disability – other than the fact that Jeff and I are his parents. Since it is not “obvious” that he has a disability some of the unpleasant characteristics of his disability are ignored. Sorry I am not much of a writer so I am struggling at explaining this. For example many children with Spina Bifida are also diagnosed with ADHD. So if a child in a wheelchair has ADHD people dealing with him/her accept this right away. When your child looks so called “normal” they just think your kid is bad. Trust me, I cannot tell you how many times I have been labelled as “Bad Mom” because of my child’s behaviour. Any mom of a child with ADHD can back me up on this one. We also don’t get as much medical information from health care professionals since “Jake has it pretty good for a kid with Spina Bifida” (word for word from a certain Dr). The hardest part for Jake and us is that he is 7 and “still” wears a diaper. Again, if he was in a wheelchair or braces no one would ask us about it and he would not be teased about wearing a diaper. Since he has no sensation in his bowels or bladder – he just doesn’t know when he has to go. This can be hard because all of a sudden he smells, but had no warning that he had to do a number 2. Luckily most of the people he is around understand his problem and just tell him to go change – but that won’t always be the case. Kids are cruel!

I worry every night that eventually someone will make him feel bad because of his disability. He has been so lucky so far that no one has treated him seriously bad, but I worry that one day it will happen and I will not be able to protect him. I honestly would give up my life to prevent this from ever happening to him. Even though he drives me wacky (again if you’re a mom with a kid with ADHD – you know what I mean) I love him with all my heart!!!

Sorry I don’t think I can write anymore tonight. I’m tired now and I just can’t think anymore. That and I have to cry. Although I took folic acid while trying to get pregnant and all through the pregnancy – I still feel that I did something wrong and now my child has to suffer.

Just a friendly reminder

2009-04-29T12:37:00.002-07:00

Just a Reminder to why I first started this blog. These are the items we are looking to get for the 2nd annual Spirit Wheel Walk Run for Spina Bifida and Hydrocephalus - For more information on this fab event, please read past blog entries. We are running out of time for the free product and coupons -- if you know any companies that can provide these please contact us.
Donation of free product coupons such as: Free slice of pizza, free coffee, free bottle of water, free foot cream, etc
Prizes: Gift Cards would be best from companies such as Walmart, Chapters, McDonalds, Tim Hortons, HomeSense, Home Depot, Sportcheck etc
Donations of Cash in order to buy 150 $2 Tim Cards
Also looking for pledges for my personal walk. Donations can be sent to me personally or you can use your credit card online -- For instruction please contact me at jrayment@rogers.com or (905) 951-2029
Next blog will be all about some of the issues you have to deal with when you have a child with Spina Bifida -- and Jake is going to do his own post today too -- since he is officially on March Break now
Also please promote this blog as much as you can, still haven't had any luck with BT

Man I have the best friends EVER -- who love me for who I am

2009-04-29T12:37:00.001-07:00

Check out what Amanda posted on her blog -- I really truly am blessed with awesome friends -- she actually made me cry -- no lying!
Also check out her blog at: http://vanmiera.wordpress.com/
She is an incredible person to spend time with always an intersting take on things and not afraid to speak her mind which is what I love best about her
Spina Bifida Spirit Wheel Walk Run
March 11, 2009

For those of you who don’t know, I have a lovely friend at worked named Jen. Jen is shameless when it comes to helping her boys. I suppose most mothers are but Jen actually points it out which makes it more endearing in my humble opinion. It is not uncommon to get 3 e-mails in an hour letting you know that there are less than 5 chocolate bars left and then a friendly visit with the remaining bars in hand and a jingle of change in her pocket in case you only have a twenty dollar bill.

Jenn has done the typical school stuff that all kids get sent home with but the charity that she will become especially ruthless for is the Spina Bifida & Hydrocephalus Association of Ontario. Now when I say she gets ruthless, I mean she really uses dirty tactics. Try getting an e-mail with a picture of her boy attached in a Superman or Batman costume with a big smile and try to tell her you won’t buy one of her $20 calendars or subscribe to a magazine. I bet you can’t. I can’t.

This year, since she has the extra time off from work after just having a second child, she is helping with what I believe is an annual event the SB&H puts on. The Spirit Wheel Walk and Run helps raise money for organization. I am posting to encourage everyone to take a look at Jen’s blog about her work with this event and some of the things that she has experienced raising a child with spina bifida. If you would like to get involved, I am sure that you could contact Jen directly through the blog (or she is on first class as Jennifer Rayment for us Humber folk). Or, if you would like to donate for her walk, feel free to e-mail me and I will get you whatever details you need.

Jen’s Blog: http://porterrayment.vox.com/
SB&H Site: http://www.sbhao.on.ca/

Information on how to pledge online: https://www.canadahelps.org/DonationDetails.aspx
- Under Fund Designation, choose 2009 Spirit Wheel Walk Run
- In the box marked Message/instructions for Spina Bifida & Hydrocephalus Association of Ontario-SB&H – type in Jennifer Rayment

Why I love BT and City TV

2009-04-29T12:26:00.000-07:00

And btw, this is not a blatant ass kiss, people have been asking why I am going on and on about BT – and why I want Kevin and the gang to mention my blog. But, if any of you CityTV people see this – please promote on BT!

I have been watching CityTV for as long as I can remember. I used to watch City Limits, Toronto Rocks (with my crush John Major who read a letter about me on air) and Cityline (have even been in the audience when Dini Petty was host as well as Marilyn Dennis) religiously. These are just a few of my favourite on-air personalities and reasons why I love BT

1. Incredibly multicultural! They also hire the disabled – which is almost unheard of in the media. For a mom of a disable child, this is an awesome opportunity to show your child that they can do anything!

2. Not everyone is stereotypically beautiful

3. They goof up and don’t try to hide it. As someone who goofs up regularly, it’s nice to see.

4. The BT gang are hilarious, kooky and real – It doesn’t look like there is a diva in the bunch. Just a little example:
http://link.brightcove.com/services/link/bcpid8724876001/bctid15354030001

5. Some of the best shows have been on City TV or affliates over the years: Chuck, Buffy, Star Trek, Reaper -- just to name a few!

Favourite Personalities

Kevin Frankish – Ok I think I have a small crush on him – but he’s just so adorable and honest! Ok and the suspenders are a turn on.
Frankie Flowers – Has actually inspired me not to kill any plants this year – This is a big challenge since I am so bad with plants I have even managed to kill a cactus
Dina – Ok, I have to be honest I didn’t like her the first time I saw her because – well she’s a hottie and I’m not -- but by the first week I loved her too, because she is so kooky and she always makes the guests feel at home.
Marc Daily – The most distinctive voice in media and just an interesting guy in general. All the work he did while he was ill was amazing.
Ann Rohmer – How can you not like a woman who loves animals that much. Also she has Trey from the Human Society on all the time and he’s just a cutie.
Jennifer Valentyne: I've been watcher her since she was the CityTV prize queen. She is always up for tryin anything and she has a beautiful voice!
These are just a few of my favs -- My lord and master is waking up so I have to make this quick : (

Now BT if you do happen to come here – COME ON promote my blog so that I can raise money for SB&H and for my son who has Spina Bifida (He now watches BT with me in the morning and doesn’t beg me to change the channel anymore). Also check out my Facebook Cause page at:
http://apps.facebook.com/causes/229184/6128641?m=6d54c0aa

For more info on City TV: http://www.citytv.com/toronto/default.aspx
For more info on BT: http://www.bttoronto.ca

Incredible people

2009-04-29T12:25:00.002-07:00

We have been extremely lucky to have had all sorts of help from the medical community for Jake. These are just a few of the many wonderful people who have helped:
Dr Peter Dirks: performed surgery at Jake the day after he was born. Incredible Dr, sort of cute and great sense of humour
Diane: unit secretary for Neurosurgery at Sick Kids – Awesome girl, remind me to tell you about the soother story. Always friendly!
Auntie Shiela: Nurse and sister in law extraordinaire. Explained what was going on in plain english (Dr’s really not good at this)
Sick Kids Hospital Neurosurgery NICU team
Sick Kids Hospital – Outstanding hospital – do everything to make kids better – the only negative I have to say is – they really need to get better Breast Police!!!!!
Mt Sinai Special Pregnancy Unit: Including awesome Dr. Kingdom
Mt Sinal NICU – made me feel better by referring to Jake as the big baby
Dr MacDonald – Hot Neurosurg fellow at Sick Kids – didn’t really talk to him much, but he was sure yummy to look at.
Bloorview Kids Rehab – Everybody is incredible – not a bad one in the bunch!
Dr Biggar: Dr at Bloorview. Incredible man and superb Dr – One of the few to explain things in plain english
Jenny Cooke: Ambulatory nurse at Blooview (She’s not there anymore and I really really miss her. We had many a many conversations on Poop – big topic when you have a child with spina bifida
Gert Mongomery – Social Worker at Bloorview – I will give her the highest compliment that she reminds me of my Dad. Cannot tell you how many times she saved my sanity. She has done incredible with Jake!!!!
Andrea Snider: Psychologist at Bloorview. She has been outstanding at helping us with Jake’s anxiety and confidence Issues.
Michaela – Nurse from St Elizabeth Health Care: Saved my sanity and got me addicted to Tim’s
Helen Sklarz: Spina bifida and hydrocephalus Association of Ontario. Great sense of humour. I like her even though she is the one who got me started on being the charity whore this year
Shauna Beaudoin: Spina bifida and hydrocephalus Association of Ontario. She has provided us with so much information and help I can never thank her enough.
The Spina bifida and hydrocephalus Association of Ontario – Exceptional help for those living with Spina Bifida and their families!!!!
I would also like to thank my incredible group of friends (you know who you are) for just being yourselves – and accepting me for the kooky girl I am. (No that is not being down on myself, that’s just the truth : )
And of course my Porter and Rayment families – who love me even though I can’t ski worth a damn
If I forgot anyone, I am very sorry – new mommy brain you know (Hey its my excuse and I will keep using it)

Jake's original diagnosis

2009-04-29T12:25:00.001-07:00

Jake’s Diagnosis
Pre-surgery: myelomeningocele
Post-surgery: lumbosacral myelodysplasic lesion
On September 12, 2001 at 8:30 in the morning Dr Peter Dirks with the assistance of Dr McDonald (Hottie) and Dr Bin-Mahfoodh repaired the lumbosacral myelodysplasic lesion on Jake’s back. The lesion was 2 ½ x 2 cm at the L5 S1 level of the spine. The lesion was covered with skin (good news) and had what looked like two nerve roots coming up into the lesion –they felt the tissue was nonviable and yielded no evidence of muscle contraction – so they amputated the lesion and sent it to pathology.
I will eventually get Dr Biggar to translate this in to english for us. But basically the Dr said he didn’t have the typical myelomeningocele but more of a lumbosacral myelodysplasic lesion. Still Spina Bifida but not as bad
The physiotherapist did a quick test on Jake before they let us leave Sick Kids and said that he had decreased sensation in his buttocks and the back of thighs and calves.
They also mentioned that Jake will never have control over his bowel and bladder and he will need to use a catheter. They said there was no evidence of hydrocephalus and he will most likely be able to walk normally

Things never to say to a mom of a child with Spina Bifida

2009-04-29T12:24:00.001-07:00

Hey, didn't you know you are supposed to take folic acid, than your kid wouldn't be disabled" -- and yes I have been asked this question many a time.
Since my mother and father raised me well, I usually use it as an opportunity to educate them about Spina Bifida and bite my tongue from saying anything nasty.
What I really want to say is "Yeah I know I did Crack too -- is that bad?"
Also other things never to say to a pregnant woman or a new mom
"So 7 years between kids -- was it an accident"
"Your kid is adopted couldnt you have a child of your own" - adopted children are the same as so called natural children -- Just ask Angelina
"Are you breastfeeding?" -- My boobs not yours, back off!
"Why is your kid still in diapers"
"You're not planning to have a second child? What if the first one dies in an accident?"
"Oh my god you are so huge"
"What did your mom do wrong to make you have spina bifida -- Jake was asked this one
"whats wrong with your son" --

Questions Answered

2009-04-29T12:23:00.000-07:00

How much folic acid do I need?
Women who could become pregnant should take 400 mcg (0.4 mg) of folic acid through a vitamin.

Women who have a child or had a pregnancy affected by Spina Bifida or have Spina Bifida themselves should take 4000 mcg (4.0 mg) of folic acid for one to three months before pregnancy. This amount of folic acid is higher than what you can get in the store, so you will need to see a doctor for a prescription. So, it's important for these women to plan any future pregnancy.

BTW, I took 0.4 mg for a long while before I got preggers with Jake and I truly believe that is the reason why his SB is so mild. With Jesse I took 4.0mg of folic acid and he doesnt have SB.

What is folic acid?
Folic acid helps the body make cells. When a woman is pregnant, she needs more folic acid than usual so her baby can develop normally. Spina Bifida often occurs in a fetus before a woman even knows she is pregnant. So women should take folic acid every day to have healthy babies.
Research has shown that if all women who could possibly become pregnant were to take a multivitamin with folic acid, the risk of neural tube defects like Spina Bifida could be reduced by up to 70%.

So in other words if you are having sex and could get pregnant -- TAKE FOLIC ACID!!!! Trust me by the time you know you are pregnant its too late to start taking it. Spina Bifida happens in the first month

Awesome websites for info on Spina Bifida and Hydrocephalus

2009-04-29T12:22:00.000-07:00

http://www.sbhao.on.ca/
http://www.sbhac.ca/beta/
http://www.spinabifidaassociation.org/site/c.liKWL7PLLrF/b.2642297/k.5F7C/Spina_Bifida_Association.htm

Updating

2009-04-29T10:00:00.000-07:00

Currently moving from other blog site to this one - but have to go now due yo baby who just woke up - please be patient : 0

Frustration

2009-04-29T09:58:00.002-07:00

Next to childbirth (with Jesse, with Jake it was easy) this is the hardest thing I have ever done. I am getting quite frustrated with it all, I havent had this much rejection since high school.
Why I am frustrated you ask?
1. Most companies have already picked their charities so there is nothing left over for us
2. Local companies willing to donate items are only for the local store which won't work for us since most of the participants do not live in Bolton (part of the safest community in canada)
3. I'm not really creative enough to get anyones attention (I can hear Carianne right now saying Dont be so hard on yourself Jen) to promote this cause.
4. BT won't answer my emails : ) -- probably because of #3 above
5. Companies that are usually good at handing out freebies are too nervous about the state of the economy
6. I REALLY REALLY don't like asking people for stuff -- but I am going to do it because this cause is so important to me.
7. Friends and family are sick of hearing me talk about this. I'm thinking some will stop answering my emails
BTW Thanks to everyone who has helped out so far. I really do appreciate all you have done. Soon this will all be over and you won't have to hear anymore about it.
Please send me questions on things you would like to know about Spina Bifida

Warped Sense of Humour

2009-04-29T09:58:00.001-07:00

As a parent of a child with special needs, you need to develop two things -- Inner strength and a sense of humour. I am still working on the first thing, but I have really developed a sense of humour -- a truly warped sense of humour!
If you are offended by my sense of humour, I am sorry, but it is something that has developed after living through some tragic events. It has kept me from breaking down and for that I am thankful. The following are just some examples of our warped sense of humour relating to our life as parents of a child with special needs. BTW, Jake is also developing a great sense of humour which I truly believe will help him with his disability

"Well I guess he is going to have to be a plumber": Said after Jake had the surgery at less than 24 hours after his birth to remove the lesion. He has a scar that goes down his backside (plumbers crack)
"I guess we cannot punish him by spanking his bottom" - Said after we found out that Jake has limited feeling in his buttocks. (We say this to Jake a lot and he thinks its hilarious)
"Well I guess we won't have to worry about him touching himself in public all the time" - Said after we found out that he also has limited sensation in his privates.
"Don't cry over spilled milk" - Jeff said this to me after I started crying histerically after I had pumped my milk for like two hours and than dropped it on the floor
Other examples we refer to my postpartum depression with Jake as the time his mom went wacky. BTW, I am not making light of PPD, its just our way of bringing up the topic -- and making it less of taboo subject.
I am sure there are some more examples but I am frickin tired after being up all night with Pox boy. Now I am off to watch my BT which I PRV'd this morning.

Jen Rayment -- Telemarketer

2009-04-29T09:48:00.000-07:00

Just call me Jen the Telemarketer

Well this sure has been an interesting challenge. It actually reminds me of High School romance, a lot of work and far too much rejection. I have had to cold call tons of companies, write official request letters and spend way too much searching company websites for contact information. They sure don’t make it easy to beg them for something.

The following are some of the companies I have contacted so far. If you have any suggestions or contacts, please give me a shout

For Prizes:
Chapters
Scholastics
HB Fenn *
Foresters Book Garden *
Sarah Fleming (Awesome Real Estate agent)*
Pharma Plus
Shoppers Drug Mart
Dairy Queen
Second Cup
Toronto Zoo
Mark Work Wearhouse
Zehrs
LCBO
Costco (Thanks Barb)
A Scrapbookers Dream

For Product Coupons

Mars Canada Inc
Tim Hortons (Kelly Stafford)
Powerbar
Hershey’s
Nestle
McDonalds
Pita Break
Wendy’s
Johnson and Johnson
Second Cup
Timothy's
Starbucks

For Promotion:

So far I have contacted BT’s Kevin Frankish hoping he might promote this a little. I absolutely adore the BT gang (And I am not just being a kiss ass in case they actually read this). They keep me informed and make me laugh my ass off. They are not afraid to goof up and don’t act like they are perfect. Also lots of cultural diversity which is nice to see. Ok, and they give away good prizes like the DVD’s I won at Christmas : )

* Have or will recieve Items

What the heck is Spina Bifida anyway?

2009-04-29T09:41:00.002-07:00

Spina bifida is a neural tube birth defect (NTD) which occurs within the first four weeks of pregnancy. The spinal column fails to develop properly resulting in varying degrees of permanent damage to the spinal cord and nervous system.
Infants born with spina bifida may have an open lesion on their spine where significant damage to the nerves and spinal cord occurs. Although the spinal opening is surgically repaired shortly after birth, the nerve damage is permanent. This results in varying degrees of paralysis of the lower limbs, depending largely on the location and severity of the lesion. Even with no visible lesion, there may be improperly formed or missing vertebrae, and accompanying nerve damage.
The three most common types of spina bifida are:

Myelomeningocele (my'-low-meh-nin'-go-seal)
Myelomeningocele is the most severe form in which the spinal cord and its protective covering, the meninges, protrude from the opening in the spine.

Meningocele (meh-nin'-go-seal)
Meningocele spinal cords develop normally, but only the meninges protrudes from the opening created by damaged or missing vertebrae and may be exposed.

Occulta (oh-kul'-tah)
Occulta, which means "hidden", indicates that the defect, where one or more vertebrae are malformed, is covered by a layer of skin. Occulta is the mildest form.

What causes spina bifida?
There is no single known cause of spina bifida. Researchers are studying the effects of heredity, nutrition, environment and pollution, which lead to physical damage to the fetus.
How is spina bifida treated?
Treatment involves surgery and therapy to minimize further neurological damage and address the resulting conditions. Treatment for the variety of effects of spina bifida and hydrocephalus can also include medication, physiotherapy and the use of assistive devices.
Many people with spina bifida will need mobility supports such as braces, crutches, or wheelchairs. Almost all will have some form of bladder or bowel dysfunction, conditions which they must learn to control and manage.
Can spina bifida be cured?
There is no cure. Ongoing therapy, medical care and/or surgical treatments will be necessary to help prevent and manage complications throughout an individual's life.
Just forty years ago, only 10% of babies born with spina bifida survived their first year. Today, with research and advances in medical technology, 90% survive and thrive!
"Spina Bifida Information." Accessed 27 Feb 2009 http://www.sbhao.on.ca/SBinfo.asp
This is just the beginning, I will post more later

What we need

2009-04-29T09:41:00.001-07:00

Hi Everyone
A lot of people have been asking what exactly we are looking for, so here's the answer.
Donation of free product coupons such as: Free slice of pizza, free coffee, free bottle of water, free foot cream, etc
Prizes: Gift Cards would be best from companies such as Walmart, Chapters, McDonalds, Tim Hortons, HomeSense, Home Depot, Sportcheck etc
Donations of Cash in order to buy 150 $2 Tim Cards

Also looking for pledges for my personal walk. Donations can be sent to me personally or you can use your credit card online. I will provide the info to those who are interested. You can contact me at jrayment@rogers.com
Thanks!
Next post will be all about what I have been doing for the charity, who I have contacted and how much begging I have done so far
Also looking for a good nickname, Jeff has been calling me "Charity Whore" and "Telemarketer" -- Need something better than these.
Thanks and sorry about the begging BUT my boys mean everything to me!

Jen

Home With Jake

2009-04-29T09:39:00.000-07:00

It’s funny how hard it is to look back and remember all the stuff that happened. Also funny to see how much I have changed since Jake was born. I used to be so Shy, had zero confidence and well quite frankly zero personality (hmm confidence issues or what).
Case in point the only thing anybody I went to public school or high school with only remembers me as the chick that had a crush on Mike Tinker for years.

Anyway off topic as usual – that hasn’t changed. The first few days home were hell – as every new parent knows. We just had a few extra worries on top of no sleep and what the hell are we doing with this new creature. We had to catharsize (sp) him every couple hours, keep a chart on when and how much he went to the bathroom and change his dressing. And not to mention the fact that I was now freefalling into postpartum depression. We also had to go to tons of Dr’s appointments at Sick Kids and Bloorview Kids Rehab. It was insane I honestly don’t remember all the things that happened at this time – it is a total blur. As I remember I will put them in this blog – but don’t hold your breath –the memory thing doesn’t work to well these days.

We did however have lots of help from various nurses, Auntie Shiela, Bloorview Kids Rehab and Sick Kids – but they couldn’t be there all the time. They helped us understand Jake’s condition, what we may expect in the future and how best to help Jake become the very best he could be. We got a crash course in Spina Bifida, Hydrocephalus, ADHD, and all of the complications that go along with these things. I will explain as best I can about all of these things in future posts. And hopefully in simple language cause believe you me I wish there was a Spina Bifida for Dummies -- because it is all so complicated.

Gotta go our newest Lord and Master Jesse has awoke and does not like to be ignored. He does not have Spina Bifida, but believe you me – he has his own issues (I’m seeing
Anger Management courses in the future for him)

The Beginning of our Journey into the world of Spina Bifida

2009-04-29T09:37:00.000-07:00

On August 28, 2001 I received the ultrasound that changed our life. Before this ultrasound I loved being pregnant. I didn’t have morning sickness, my hair was curly and I was just having a grand old time. Well I went in for a routine non stress test because Jake really wasn’t moving around a lot – not that he moved around a lot before, but they just wanted to make sure he was ok.

The nurses at York Central Hospital figured while I was waiting for the Doc to come around to discuss my test, that they would send me down for an Ultrasound. During the test the technician started to make me nervous by asking all sorts of weird questions. After it was all over the tech came out to tell me that my child has a Myelomeningocele (Spina Bifida) and that my Dr would come talk to me soon. I called Jeff to tell him what was wrong and to meet me at the hospital. We were devastated and to make it all worse, my Doctor was too busy to talk to me and would call me in the morning.

We called my sister in law Sheila, who at the time was a nurse in the Urology department at Sick Kids. She was incredible and I will never be able to thank her enough for how much she helped us. She got us into the Special Pregnancy unit at Mt Sinai right away and basically just explained to us all she knew about Spina Bifida. The Dr’s and Nurses in the special pregnancy unit were amazing. They explained what the worse case scenario was for Jake and how they were going to help us with everything. They explained everything in plain English and made sure we understood everything.

Two weeks later on September 11, 2001 at Mt. Sinai, Jacob Rayment was born. He had surgery at Sick Kids to remove the bump on his back at 8:00 am the next morning. Dr Dirks was his neurosurgeon and did an awesome job. They explained that his diagnosis was a lot better than they originally thought. The nurses in the NICU and the Urology department were exceptional – well with the exception of the “Breast Police” (More on them later) We spent a week at the hospital and than they sent us home. That’s when the real fun started. Kid with Spina Bifida and mom slowly falling into Postpartum Depression – no wonder Jeff had a heart attack 2 years later!

More to come later, I got to go pick up Jesse from Joan’s house. Thanks Joan and Keira for taking him so I can get some work done. BTW, Joan was a godsend while I was off on Mat leave – and well pretty much ever since.

Spirt Wheel Walk Run 2009

2009-04-29T09:31:00.000-07:00

This is a blog I am creating to promote my work for the SB&H in preparing for their annual charity event. It will also be used to advertise my experience in the walk and how much I raise for this exceptional organization. I will also tell you all about why I came to support this charity and the experiences of being a mom of a child with Spina Bifida