Gravol and the Children's Wish Foundation

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

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

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!

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.
   
• Everyone has a chance to win in the raffle lottery – in fact you can win more than once since winning tickets are returned for the next draw.
   
• We are giving away 99 cash prizes throughout the year worth a total of $15,000!
   
• A win guarantees a minimum cash prize of $100!
   
• Thank Goodness It’s Friday means that you can win cash every Friday throughout the year.
   
• Bonus draws on the 1st, 15th and 27th of the month bring added value.
   
• Win once and the calendar pays for itself!
   

Buy a Calendar for Your Chance to Win!

When you purchase a “Thank Goodness It's Friday” Lottery Calendar, not only do you support SB&H programs and services …you have a chance to win your share of $15,000 in prize money!
99 cash prizes totalling $15,000 ranging from $100 to $1000 will be awarded:
$200 Thank Goodness It’s Friday (each Friday January to May & July to December) 48 prizes
$200 Thank Goodness It’s Friday June Special (Fridays in June for Awareness Month) 4 prizes
$100 First of the Month Bonus (First day of each month) 12 prizes
$250 Mid-Month Madness (15th of every month) 12 prizes
$100 Payday Advance (27th of every month) 12 prizes
...PLUS 10 fabulous bonus draws:
$200 Valentine’s Day
$300 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
Win more than once! Winning tickets are returned to the drum so that you can win again! 

How to Order: (Mention Rayment Family when Ordering)

Place your order with SB&H to have your calendar mailed out today.
Order By Phone:  Simply call 800-387-1575 or 416-214-1056.
To Order by Fax or Mail
1. Download and print an order form .http://www.sbhao.on.ca/about-us/tgif-lottery-calendar Lottery License M659430
2. Fax your completed to 416-214-1446
3. Mail your completed order form to:
SB&H
P.O. Box 103, Suite 1006
555 Richmond Street West
Toronto, ON M5V 3B1

Another Family living with Spina Bifida

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

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

  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

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

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

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

  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

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?

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

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

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

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

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

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

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