Things that I am Grateful for!

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…

This time it’s personal…

Letter for Current magazine

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Hi Everyone

Here is the prize that Mars Canada donated.

Thanks!

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

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

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!!

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!

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

http://www.myspinabifidabook.org/

Thanks Elizabeth

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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?

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

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

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

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

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