Children's Books

I enjoy finding new books. Not necessarily about spina bifida, but books to help normalize the experience of spina bifida/hydrocephalus and/or disability in general. I have collected multiple books over the years and have looked for recommendations.

Here is a collection of books I have found. Some of them we have, but not all of them.
I haven't included any links to specific companies (for example amazon) unless I have found them for free or ONLY at that link. Between the title, the picture and the author you should be able to find these books at your local book vendor (whoever you use).


Books About Spina Bifida

Right Under My Nose

• Available to download: http://www.myspinabifidabook.org/pdf/SpinaBifidaBook_Eng.pdf
• A book about a little boy with spina bifida who is looking for something special to take to school
• http://www.myspinabifidabook.org/ a complimentary website with other resources connected to this book

Marlene Lutkenhoff is a nurse who has written a number of books about spina bifida, with Becky or Timmy to help to explain some of the medical aspects of spina bifida

Another Way to Go

• By Marlene Lutkenhoff, 2012
• 2 different books about Becky or Timmy on their first day of school. To help to learn about cathing

Detour Ahead

• By Marlene Lutkenhoff, 2012
•   Timmy (from Another Way to Go) gets sick and finds out that his shunt isn’t working

Isaac’s Back Adventure

• By Christine Nadeau, 2010
• About the adventure’s Isaac’s special back went on, Isaac's back goes everywhere with him. But it also has to fight and be strong 
• Specifically about lipomeningocele

I really like this one, even if it is about a lipomeningocele (where the operation to fix the back is done at a later age) it is still applicable

Katie McComis has written 3 books about spina bifida. I haven't read them, but now they are on my to-read list

The Spina Bifida Potty Book

• By Katie McComis
• Written for toddlers and young children to understand why catheters and enemas are important

I have spina bifida

• By Katie McComis, 2015
• Geared to educate young children about spina bifida and normalize their condition

The Princess And The Kitten

• By Katie McComis and Evvie Marin, 2014
• About a little girl living with spina bifida and a kitten born with spina bifida too

Blueberry Lu: A story of a feisty little redhead with spina bifida

• By Lisa Goff, 2015
• About a girl who loves blueberries and what happens when she eats cold berries
• I haven't read this books, but it looks like an adventure

SHINE Charity in the UK created a serious of books about Benny, who has hydrocephalus and Bella, who has spina bifida

Benny the Bear books

• About Benny the bear who has hydrocephalus and a shunt
• There is a series of books: Benny gets better, Benny’s new shunt, Benny goes to school, Benny goes on holiday, Benny’s team wins
• Available to download for about £1 from the UK site https://www.shinecharity.org.uk/bennyandbellabearclub/bennybearbooks

Bella the Bear books

• https://www.shinecharity.org.uk/bennyandbellabearclub/bella-bear-books
• Available to download the first book, apparently there are more on the way

Sharon Ennis is a mother to a child just a year old than Nickolas, who I have met (both of them actually). She has written 2 books. One called Gabby's Gift (about her experience after Gabby is born with spina bifida) and another a children's book.

My Silly feet

• By Sharon Ennis
• about a little girl who wants to race, but she has 'silly feet' and is afraid people will laugh at her. Then she reads about Terry Fox and wants to be brave like him.
• Available from itunes or http://facesofspinabifida.com/articles/my-silly-feet-childrens-book - I tried the link on the page and the online ordering is not available, I am not sure if it is still in print?
• If it isn't available in print I would be very upset, Nick has brought this book to school multiple times

Mr Fancy Pants: The story of Munster

• By Neal Wooten, 2015
• About an English Bulldog who was born with spina bifida
• This is another book I haven't read, but is a true story about Munster, who is apparently a facebook sensation

Katie CAN do.. and you CAN too

• By Katie and Sarah Hull, 2013
• Katie wrote about all of the exciting stuff she can do
• I know Katie's mom through facebook and her blog! She has a video about why she wrote this book here.

My first day of 6^th Grade

• By Elijah Walker, 2013
• Another book written by a child-author with spina bifida
• Born with spina bifida and hydrocephalus, Elijah's story is about his first day in 6th grade (middle school)
• I haven't read this, but I think it would be interesting when Nick is closer to 6th grade.

Books about Disability (not specific to Spina Bifida)

I don't always want books about spina bifida, or really about disability specifically. It helps kids to learn that spina bifida and a disability is not a whole child's story, but a part of it.

What can you do?

• By Kevin Arnold Haring, 2010
• A young girl tries to make a new friend and talks about all the ways they can play together

Susan Laughs

• By Jeanne Willis and Tony Ross, 2000
• Susan is just like everyone else. On the last page you see she uses a wheelchair

Daniel’s New Friend

• By Becky Friedman, 2015
• A Daniel Tiger book. Daniel Tiger meets a new friend and notices that she wears braces on her legs to help her walk
• There is a cartoon episode of this book as well

The Adventures about Wally the Wheelchair

• By Marty Martman, 2013,2015
• There are 2 in the series (which I hadn't realized, I've only read the first one): A New beginning, Wally goes to school
• About a child’s wheelchair, from the perspective of the wheelchair.
• Wally doesn't understand why his maker made him a wheelchair... until he meets a little boy who helps him see his real purpose
• It's a fun book from a different perspective (it did have me tear up a little though)
• Free from KindleUnlimited

Zoom

• By Robert Munsch and Michael Martchenko, 2003
• About a girl who is trying out different wheelchairs and wants the fastest and biggest one there is!
• A fun book in typical Robert Munsch style

Lemon the Duck

• By Laura Backman and Laurence Cleyet-Merie, 2009
• About a duckling that needs some extra help to move around, and a group of students who work together to make that happen.
• Another true story
• You can visit the website but also on facebook and youtube.
• Resources for teachers, and an address to send pictures and letters

Dancing Wheels

• By Patrician McMahon, 2000
• Backstage with the Dancing Wheels dance company, following a ‘sit-down’ and a ‘stand-up’ dancer
• It's a little old (2000) and I haven't read it, but for anyone dreaming of being a dancer and want some real-life inspiration it looks like it would be good

Marco and I want to Play Ball

• By Jo Meserve Mach and Vera Lynne Stroup-Rentier, 2015
• A story about 2 cousins who want to play baseball
• based on a true story
• Who is going to hit the ball farther, higher?
• I haven't read this book, but the back talks about a story of inclusion and self-determination

All Kinds of Friends, Even Green

• By Ellen Senisi, 2002
• The book is written with photographs
• Writing about someone just like him, a boy writes about an iguana who needs to find different ways to move around
• Animals can have special needs too

Where do I hide my Hippopotamus?

• By Kevin Haring, 2010
• There is an adventurer in all of us
• Where would you hide a hippopotamus you found on the way to school?

Featherless: Desplumado

• By Juan Felipe Herrera, 2013
• Tomasito starts a new school and everyone on the soccer fields wants to know why he is in a wheelchair. His father gives him a little birth that is different from the rest

Some longer books for older kids

I haven't read any of these longer books yet. But they look good as Nick starts getting older

Dragon Dreams

• By Linda Stalvey, 2016
• About best friends and a magical adventure to play in a treehouse with a friend in a wheelchair
• This is another one that I haven't read, but it looks good.
• 79 pages 

Anna Brown and the Missing Uniforms

• By Annie Donahue, 2015
• 11 year old Anna needs to find the missing wheelchair basketball uniforms, or her team will forget. A book about a mystery and problem solving
• 84 pages
• Free on KindleUnlimited

Jimmy Wheelz and the Minilights

• By Tony Vanga, 2014
• Jimmy just started school and became sick due to spina bifida, when he is admitted to the hospital he finds a light inside himself with magical creatures
• 82 pages
• Free on KindleUnlimited

Inspiring… not about disability

I know there are more books that are like this, but these are the ones that I have read and enjoyed 

The Dot

• By Peter H. Reynolds, 2003
• Not specifically about disability. About a little girl who says that she can't draw. When she makes a dot, and signs it she finds that she really can.

Giraffes Can’t Dance

• By Giles Andreae and Guy Parker-Rees, 2012
• About a giraffe who sees everyone else in the jungle dancing, but doesn't think he can because he will look funny.
• This is a bestseller, and one of my favorites

Puckster Books

• By Lorna Schultz Nicholson and Kelly Findley, 2011-2014
• A series of books about Puckster and his hockey team. One of the players  plays in a sledge.
• Now that the kids are loving hockey, I think we will pull out these books again

Bladder Tests

There are some common tests that the urologist may do to see what is going on with the bladder and kidneys.

A valuable resource for different urinary and bladder tests can be found at AboutKidsHealth

The first and least invasive is kidney ultrasound. It allows a view of what the kidneys look like. They look at the size of the kidneys, any scarring, hydronephrosis (dilation of the kidney) and any indication of infection and determine if the kidneys are healthy.

Hydronephrosis is when the kidney swells up (increases in size) because urine is building up in it. It can be caused if there is a blockage and urine cannot drain out, or if urine in the bladder is being pushed back into the kidney (reflux). There are different grades of kidney reflux.
To prevent kidney reflux it is important to relax the bladder.

A VCUG is with an x-ray. VCUG stands to Voiding CystoUrethroGraphy.

You lie down under an x-ray machine. A catheter is put into the bladder and the bladder is filled with contrast. It looks at the bladder capacity (how much urine the bladder can hold) and what happens when the bladder is full. What is the shape of the bladder? Does it leak out? Or does it reflux into the kidney? The contract allows the x-ray to see exactly what urine does. The test takes about 15-20 minutes and gives and understanding of bladder capacity.

The picture shows reflux on one side (http://www.hindawi.com/journals/au/2011/852928.fig.001.jpg)

Urodynamics is another test.
Urodynamics is to evaluate the relationship between pressure in the bladder and flow of urine through the urethra. The test measures and evaluates filling the bladder, emptying the bladder and tries to recreate instances of leaking. All of the information is recorded on a video screen

http://img.medscapestatic.com/pi/meds/ckb/42/13242tn.jpg

This test is a little more involved, it measures filling the bladder with fluid and measuring what the bladder does. A catheter goes into the bladder and the rectum and electrodes measure pressure.
It goes very slow, because it is looking as bladder movement and spasms it is important to stay still for most of the time.

At different times during the test they want to see how the bladder reacts to different movements, so you are asked to cough at specific times. When we went he never wanted to cough when it was time, and it was something we should have practiced ahead of time, but I never thought about it. They looked to see what the bladder would do when it was completely full.
Usually my son doesn't feel it when his bladder is full, but this time when it was very uncomfortable when it got full.

All of these tests helps to give an idea of what is going on with the bladder and kidneys. A neurogenic bladder means that the bladder does not work like it should due to neurologic damage (damage to the nerves that tell them what to do). There is a variety of things that the bladder may due because it doesn't know what to do.
Urology is a very important member of the health care team and helps to provide professional guidance in the care of bladder and kidneys.

Resources:
http://www.aboutkidshealth.ca/En/HealthAZ/TestsAndTreatments/Tests/Pages/UrinaryandBladderTestsHome.aspx

Bladder Plans

We have been having some issues with bladder leaking between cathing.
We had a VCUG and Urodynamics a couple of months ago and left with a plan to increase cathing and record output (volumes cathing and amount of leaking).

The increase in cathing time we were not that great with, but most of the time we were about every 3-4 hours. At school it increased to every 2 hours; which means he is out of class for 45 min a day (3x 15 min). And we were still getting some leaking. Over Christmas break I recorded all output to have some data to bring.

I brought all of our information for our urology appointment and is showed that there is leaking probably about 80-90% of the time.

To try to stop the leaking we discussed options: in medication and urology procedure.

Oxybutynin is the medication of choice for neurogenic bladder. It is an anticholinergic medication and relaxes the smooth muscle of the bladder.

Gelnique is Oxybutynin in gel form. It is topical, which means we put it on his skin and it gets absorbed.  Because it is absorbed in the skin and not in pill form we have noticed a decrease in side effects such as flushing, over heating, constipation.
Because we are currently using this already, the option we discussed is increasing the gelnique. It is expensive, and the more you increase the dose the increased chance of side effects.

Another option is to try oral medication.
We have used Oxybutynin in a liquid form (and ended up with a ton of cavities). And we discussed trying a pill instead of liquid form. But anything taken by mouth has increased side effects. My worry is that we are really good with our bowel routine. And I don't want to mess that up. To take oral oxybutynin he would have to take this medication 3 times a day, and we would have to offset the constipation with medication daily or every other day.
This isn't really something we want to do right now.

Oxybutynin can also be crushed and flushed into the bladder. This would be similar to the oral dosage (3x a day), but with less side effects because it is right at the source. It is time consuming and can be messy. In the end, it was not recommended.

There are other medications called Detrol. I don't know very much about the medication, other than it is used as an alternative to oxybutynin.

The other procedure options are more invasive and now the question is, what is more invasive? Putting a variety of medication in your body on a daily basis at a dose so that it will work. Or trying something else.

The other option (and one we are going forward with) involves general anesthetic in the operating room for the purposes of a cystoscopy. A cystoscopy in adults does not need general anesthetic as it does not involve any actual surgery (like incisions and stuff). But in a child, they do it with the child asleep.

A Cystoscope is a tube that goes into the urethra and into the bladder, the tube has a light and a camera and things (like a needle) can be passed through the tube to inject into the bladder. 

The cystoscope allows the doctor to inject Botox into spots in the bladder. Botox is also known as botulinum toxin, a name that makes you take a step back. We are giving our child a toxin?! It is of course known most commonly for cosmetic reasons, by weakening facial muscles and smoothing wrinkles. But that is exactly what we want to do to the bladder.
Botox treatment for urinary incontinence due to neurogenic bladder in children is an approved use. It does exactly what it says it does. It paralyzes (relaxes the spasms of) the bladder muscles by injecting into the bladder in multiple places. This is done through the cystoscope.

The effects of the Botox is temporary and will need to be repeated about every 6 months. But as the effects of the botox starts wearing off then we can start looking at medications again. The botox injections means that all other medications can be stopped while the botox is working. I personally used Botox injections to treat my hyperhydrosis (excessive sweating) and found that it worked perfectly for 6 months, and the following 6 months it still worked but not perfectly. And by a year I was back to where I was.
Most of the side effects of the botox (difficulty urinating) we already cath, so it is not an issue. But infection is the most common side effect. I have seen some studies that recommended antibiotics.

The other option that we discussed was a Bulking agent. This means an injection (through the cystoscope) of a bulking agent, such as collagen at the bladder neck to make the bladder neck tighter. This means that by moving around and being more active (like at school) the bladder won't leak. If it looks like the bladder neck is open a lot, then they will do the bulking agent. This isn't something that would need to be repeated. If it isn't open and leaking, then they won't do the bulking agent.

I would hate to do it, and inject something and then not be able to advance the catheter. Because we still need enough space in the bladder neck to advance a catheter.

Originally posted at www.riddingfamily.blogspot.com

What is the MACE

When I have been posting about Nick's surgery I have been trying to link back to what the MACE is.
I do have it described within the blog, but no one post that says "this is what Nick had done".
So this post is all about what the MACE is.

MACE stands for Malone Antegrade Continence/Colonic Enema (or just plane Malone) and it is surgery.

Malone is the guy who perfected the procedure, Antegrade means moving forward, the C stands for Contience, which is the goal or Colonic which is the part of the body (colon) involved, Enema is introducing fluid to clear out the bowels of poop.

So how do you actually do this? You use the appendix. That part of the body that no one knows what the purpose is. It has a purpose when spina bifida is involved. It is tubular which is perfect for put a catheter through and into another organ like the colon (it can be used to go into the bladder as well in a surgery called the Mitronoff, but can only be used once).

So the MACE uses the appendix to move an enema solution forward through the colon to provide continence and prevent constipation, in a way that provides easy access for the individual and leads to independence.

So how is this done?
First some biology. The appendix is attached to the colon. The colon, also known as the large intestine is where poop has difficulty moving, moves slowly and constipation is when the colon fills with poop that doesn't move and clear out. And the end of the colon is the rectum and bum.

Our goal for continence with spina bifida is to clear poop out the colon and be able to time when it is filled again. This allows a clean colon during the day hours so there is no poop to leak out (incontinence)

A traditional enema puts in fluid through the bum to work it's way backwards through the colon, collect all the poop and then poops it out. An antegrade enema moves fluid forward through the colon and poops out the bum. It doesn't need the time or fluid amount to works it's way up through the colon, because it starts at the beginning.

The MACE surgery involves bringing the appendix to the belly button to create a stoma or a surgical opening/hole. Usually this hole is hidden in the belly button. It is tightened inside so that fluid can go in, but nothing drains out.

A catheter goes in through the stoma, through the appendix and into the colon. Fluid goes through the catheter and into the colon flushing it forward and out.
This pictures shows the stoma in the belly and not the belly button. It shows the ileon (small bowel), colon, appendix, stoma and catheter. (all labelled in ?Spanish)

A foley catheter (latex free of course) is used, which has a balloon on the end to keep it in place in the colon while the fluid is going in. At the end of the flush the balloon is deflated and the catheter comes out. Leaving the stoma hidden in the belly button.

So that is the end result. But first is the surgery. It takes about 2 hours under general anesthetic. They can do it laproscopically, which means there is no large incision, but a smaller incisions (with 2 stitches) that allow the doctor to work. It won't interfere with shunt tubing either.

With laproscopy, there is no large incisions, less pain and a quicker recovery. And less of a hospital stay. 

We stayed in hospital 2 nights/3 days and were ready to be discharged home. By the time we went home Nick didn't need any more morphine, and just using Tylenol/Advil as needed (But he did need them the first night). The hospital stay and recovery is different for every person and every surgeon. It depends on techniques, complications and pain control. The more invasive the technique, the longer the recovery and the more the pain.

For the recovery Tylenol and Advil work at home. And a foley catheter is left in place to keep the stoma open and let it heal. (The stoma is like an ear piercing and will try to close if you don't keep in place or pass a catheter through it regularly).

There is some of patient information available on the internet.

This is a patient education package for patients from Urology department in San Fransisco. It has pictures and describes the procedure and recovery. It is very similar to the package that we received when we left the hospital gave to us prior to discharge.

I found another pdf document that talks about parent experiences and opinions with the MACE. It was very helpful for me to try to figure out what to expect and what complications there could be and also the opinion of those who are actually living with it.\

So that is the MACE. There are other options out there, some are surgical and some are non-surgical.
We worked our way up to surgery, and did not make the decision lightly.

SB University

If you are looking at any information about spina bifida I'm hoping that you will explore SB University.
http://www.sbuniversity.org/

This is an online platform to 'purchase' courses. I say 'purchase' because they are all free, but you still have to add them to your shopping cart and go through the process of buying something, without ever putting in any kinds of credit card information, because it is free.

These free webinars are offered through the Spina Bifida Association.

What is more incredible than free education that I can learn about right in my own family room.

At the end of it you can even print a certificate of completion (If education hours are important).

I'm still currently exploring all of the different webinars offered. But I'm excited about the bowel and bladder management as well as the introduction into school sessions.
It is not aimed specifically at parents, but healthcare providers, educators, and of course individuals with spina bifida as well.

I'm excited to go through more of the webinars and add some education to this site.
But check it out yourself!

Spina Bifida Awareness Video

This is a video that I created to spread awareness for spina bifida month in June.

Sharing my take on Bowel Continence

*Updated with some parent resources*

Trying to become socially continent is a journey and a challenge. There is no right answer, there is just a lot of trial and error as well as a progression through various steps. This post isn't about constipation - that would take a whole different post. It isn't about consistency of poop, but about consistency in timing.

I call the bowel a stubborn teenager that yells "I won't do it! You can't make me!" And folds it's arms and stomps its feet until you wear it down but doing the same thing over and over again.

So anything that you doesn't happen over night. To say that something was a fail means that you tried it for weeks before saying that it didn't work.

My knowledge comes from my own experience and what I have learned over the last couple of years. And it is by no means extensive.

We progress through the poop steps of least invasive to most invasive.
There is wide ranges to spina bifida and neurogenic bowel, so there would be wide ranges to the ability to become socially continent.

• Diet - I had a great dried fruit combo for baby food that kept Nick regular when he was a baby, but this was more about keeping him from getting constipated than getting him clean. Because as a baby diapers is expected. 
• Staying away from cows milk is also a biggy in our house. For milk we use almond milk or goats milk. Goats milk is easier to digest than cows milk and less constipating.
• Oral laxative - PEG flakes (Restoralax) we give every morning, in oatmeal, it is quick and easy, doesn't have a bad taste. We can adjust it up and down depending on what we need. Right now we are at 1tsp every morning (but have gone up to 3Tbsp when we really need it). And as I've heard there isn't a maximum dose.
• We have tried some other medications like lactulose (didn't like it, didn't work, it was a liquid and he needed to take it too often for it work into our lifestyle)
• Senna we haven't tried. I've heard very negative things about senna and want to stay away from it for now. I've heard that it is habit forming, which doesn't really make sense because the neurogenic bowels need the habit.
• Omega-3 and probiotics, we used this as a supplement for a while and it made a huge difference, but we still needed the restoralax. We are on a break right now, but I find it makes Nick smell like fish for a while. Will probably start it again soon
• Stimulation. You are stimulating the muscles to work. This can happen by gently pressing around the anus
• Suppositories. Again medication. It seems like this has a couple of steps
• Glycerin is the first step, but we found it didn't do anything to help.
• Ducolax is a medicated suppository, the medication in it also stimulates the bowel to move. This has been great for preventing or keeping him from getting constipated, and when we do it every day or every other day we get things moving, but I found he is leaking all the next day. So it just isn't working for getting him clean.

• Enema. This is using liquid (with or without something added to it) to clean out the colon more completely than the suppositories will do. The more comes out at one time with the enema the less that can come during the day. This is a retrograde enema - so it works in the colon from the bottom (literally) up.
• There are different types of enemas.
• A regular tip enema, but I found that using this (like a fleet enema) doesn't work. You have to have the muscle control to tighten around the tip, which Nick does not have, so the fluid doesn't stay in, which is the whole point. And just squirts right back out. So this hasn't worked for us.
• A cone enema, is the step we are currently on. It is typically used for cleaning out colostomies. And it is cone shaped to fit into the hole of the colostomy, but we are using it for a different reason. The cone shape means that we can create a stopper without the muscle control. So the fluid that goes in, stays in to work, and when the fluid comes out, so does all of the poop in the colon.

• A catheter type of enema - this is newer and more expensive. But it works to do the same things as the cone. Instead of the cone shape it is a tube with a balloon at the end to keep the tube in place and keep the water from coming out.

 

• Once all of the fluid has been put in, the tube or cone or whatever comes out. This way the bowel is clean as far up as the fluid can go.
• Surgery. This is the final step. There are 2 different types of surgeries, it takes the enema solution and starts at the top of the colon, (called an antegrade enema) around where the appendix is, and cleans the colon from that point and down. It seems to me to be the most effective way, but also the most invasive - because it involves surgery.

• MACE
• What the MACE stands for is Malone (the guy who discovered it in the 80's) Antegrate Continence Enema. So they take the appendix (which is already attached to the top of the colon) and make it so that it connects to the belly button, so that a tube can go into the colon and put the enema solution from the top and clean out the entire colon. It is a laproscopic surgery, it will not interfere with the shunt tip, he says there is a quick recovery from it. On the outside the belly button will just look like an inny (this is how our urologist explained it - I tried to find some pictures to see what the results actually looks like, but I can't fine one). There is something about a flap or something that comes down - so that things don't back up the wrong way.

You need to have an appendix to have this as an option.
This is a chapter in a textbook. It has pictures
http://www.biliaryatresia.org/reference/Malone-procedure.pdf

A helpful parent information package is available http://www.urology.ucsf.edu/sites/urology.ucsf.edu/files/uploaded-files/basic-page/ace_malone_2.pdf

• Ceacostomy
• The other kind of surgery isn't really surgery. It is a ceacostomy button. It is when they take a tube, and through radiology guided the poke the tube from the belly into the colon. Then the tube stays in, and on the outside is a button that stays closed when you don't need it. This is just like a g-tube. If it not needed it can be removed.

The urologist was not very positive about this (but he is a surgeon that does the MACE, so I'm not surprised).
The button seems less invasive, but if we are putting something foreign into the body it can get infective, whereas the MACE is more invasive but less likely to get infected or have the body 'reject' it.

There is another parent information package available
http://www.hamiltonhealthsciences.ca/documents/Patient%20Education/CecostomyTubePORTRAIT-lw.pdf


This is so far the extent of my research to share. Other sites I found useful are:

http://www.mededmasters.com/anterograde-continence-enema-ace-procedure.html
http://addberbe.hu/templates/ja_zeolite/images/cecostomy-picture
http://www.docstoc.com/docs/93351272/Information-for-Malone-MACE-Appendicostomy