Thursday, April 10, 2014

Boys' New Bedroom - A Win-Win

I've been wanting to move the boys' out of their bedroom into two separate bedrooms for years.  We have four bedrooms upstairs.  We're in the master, the boys were in the next biggest room and that left the two little rooms as spare rooms.

Even though they're twins, I've always wanted to them to have separate identities, their own things, and their own space.

But they were not at all interested.  They wanted to stay together.  Here's a pic of their old room:

Well, in December, a brilliant idea just seemed to jump into my brain.  Since the 2 little rooms are basically mirror-image rooms that share a wall, why not open up that wall in between them and put in double pocket doors.  Then, they each get their own space but also get to share a room!?!  It's a win-win.

It turned out fantastic and tonight they finally get to sleep in their new room(s)!

Here's Ben's side:

And here's Daniel's side:

And here's a photo that shows the dividing wall between their rooms:

So right now, they are all tucked in to their new room(s) and loving it!  Here's Ben:

And here's Daniel:

It makes me a little sad.  They were in the other room for almost 6 whole years.  Feels like we're leaving baby-hood behind us.

Now let's just keep our fingers and toes crossed that they don't fall out of bed or get lost in the middle of the night!

Tuesday, April 8, 2014

Anyone out there?

Hello there strangers!  Anyone out there?  Anyone still reading?

I can't believe that I haven't blogged in a year and a half.  18 whole months.  I'm not sure what happened.  I got busy I guess.  I still read my favourite blogs and I *think* about blogging.  But I just never do it.

I'm not even sure where to begin.  Ben and Daniel are both doing fantastically.  They are now over half through Grade 1.  School has been amazing for them both.  They are both excelling academically, have lots of friends and love their teachers.

Ben's progress has been slow but steady.  I will have to dedicate a full post to that soon.  Actually, I have a ton of blog post ideas swirling around in my head right now.  So hopefully I can commit to blogging once or twice a week and get to all those blog posts.

We recently went on our first cruise.  It was a family cruise over March Break and we enjoyed 5 lovely and magical days on the Disney Wonder.  Here are a few pics of us:

First, Ben and Daniel loved to wrestle in the Mickey Pool.  We kept to an early-to-bed-early-to-rise schedule and often got to enjoy the pool all on our own for at least a half hour.  And even then, it wouldn't get actually busy for an hour or two.


And here's a family pic from our balcony.  I just love this pic so much.  We hardly ever manage to get one of all four of us (let's face it, I'm hardly ever in any pictures) and this one turned out so great. 

Back to Ben for a quick moment before I officially hit "publish".  When I left you 18 months ago, Ben was doing well - learning to walk with crutches and doing well with his walker.  He now walks tremendously with his crutches and uses them inside school.  He still uses his walker but that is limited to outdoors and gym class only.  He can now take independent steps but we are working on that being a functional way for him to get around.  I am confident we'll get there.

I just posted this video to Facebook this afternoon of him walking around our kitchen:

This is a huge deal!  My "dream" for Ben since he had SDR over 2 years ago was to get him to the point where he could walk independently indoors and used crutches for outdoors and uneven ground.  And we are close.  Oh so close.  Realistically, it could be 2 years before we're REALLY there.  But I KNOW we'll get there. 

Well.  There.  I did it.  Wrote an actual blog post.  Sorry it took so long!

(Please, please, please leave me a comment so I know that someone is still out there wanting to know how we're doing.  Oh...and if there is anything you'd particularly like to know about, then leave that in the comments too!)

Tuesday, October 9, 2012

SDR - Guest Post 1 - Sarah Kate

A year ago, when we were considering a selective dorsal rhizotomy for Ben, I scoured the internet for information.  And while there was lots of technical, medical-type information out there, what I was really looking for was the stories from the families.  I wanted to know how old their child was, where they had it, what type of SDR was done, and much, much more.  And while I was somewhat successful, it frustrated me that it was so difficult to find.  

To hopefully help other families that are considering this surgery for their child, I put together a list of questions and emailed them out to some families I know whose child has had SDR.  I plan to post their stories here on my blog over the next few weeks or months.

To start, I bring you Sarah Kate.  Sarah Kate's, mom, Andi of Bringing the Sunshine took my questions and answered them via a blog post.  I have followed Sarah Kate, and Andi's blog for about a year as hers was one of the families I "found" on my quest for more information on SDR.  I continue to follow this blog and love seeing and reading all about Sarah Kate's athletic endeavours as I try to see what the future may hold for Ben. 

Thank you so much Andi for contributing to my little project!


In December of 2002, my daughter, Sarah Kate, was born ten weeks early due to a placental abruption. Although she sailed through the NICU with few problems, she was small for her gestational age at birth and before she was discharged the neonatal physical therapist suggested some exercises for the tightness in her legs. No one indicated that the tightness was cerebral palsy - no one even suggested that it might be permanent - so we went on our merry way, confident we had dodged a bullet. Like many parents of children with CP, though, we were referred to early intervention, a neurologist, and an orthopedist when she wasn't hitting gross motor milestones by the age of nine months.

I have an analytical nature, so I began researching to determine what was going on. Doctors and therapists were still reluctant to say "cerebral palsy," opting instead for "hypertonia," but I figured out pretty quickly that was code for spastic CP. The neurologist referred us to spasticity clinic at Children's Hospital in Birmingham, Alabama, where she was evaluated separately by a physiatrist, orthopedic surgeon, neurosurgeon, and pediatric physical therapist, who then met together to recommend a course of treatment for Sarah Kate. After all of the reading and research I had done, I was almost certain they would recommend selective dorsal rhizotomy (SDR), and they did. She was scheduled for surgery one week after her third birthday.

Before SDR, Sarah Kate used a stripped-down gait trainer (essentially a walker) to get around. She was good with it, and speedy :) but she couldn't walk independently at all because her balance was so poor. She took oral baclofen for about a year during that time, which helped a little, and was weaned off of it in preparation for the SDR. The physical therapist who oversaw her post-operative therapy told us to put the walker in the attic the night before the surgery, because she never wanted her to use it again (she didn't).

We weren't certain what to expect, and I was careful not to get my hopes up too much. The specialists and therapists told us that a one-degree improvement (walker to canes) would be considered a success, though she could improve even more than that. I searched for before and after videos of other children who'd had the procedure and tried to compared their "befores" to Sarah Kate. Of course, every child with CP is different, so there were no perfect, or really even any strong, matches.

Sarah Kate's surgery was performed the first week of January 2006 by Dr. Oakes in Birmingham, Alabama. We briefly considered going to St. Louis to have Dr. Park do the procedure, but Dr. Oakes had been doing the procedure for almost two decades (almost as long as Dr. Park) at that time, so we were confident in his ability. Birmingham was also only about 75 miles from our home, and we felt that it was important to stick with the same team for rehab. Post-operative physical therapy is such a crucial piece of the SDR puzzle, and we wanted to work with therapists who had a great deal of experience with it. Sarah Kate was one of the last children (perhaps THE last) to receive the traditional procedure by Dr. Oakes, so she has the longer scar, but it was worth it to go ahead and have it done and get moving!

Sarah Kate's recovery went well, though she was forced to remain lying on her back for an extra couple of days. The procedure was performed on a Wednesday, she was discharged on Saturday, and she was first allowed to sit up on Monday morning; another little girl the same age had her surgery the same day, was released on Friday, an sat on Saturday (we just happened to know the family). After leaving the hospital, her pain was managed by simply stacking children's Motrin and children's Tylenol (OTC) for several days. We were required to stay nearby, as traveling more than twenty minutes or so by car was not recommended, so we found a small apartment near the hospital.

After being checked out at "home" on Sunday by the physical therapist, Sarah Kate began rehab on Monday morning. She went once in the morning and once in the afternoon, Monday-Friday, for three weeks, and each session lasted about two hours (four hours total per day). The first day blew us away, because within just a few minutes of beginning the session, Sarah Kate was sitting "criss-cross applesauce" on the therapy mat - something she'd never been able to do before that day.

In the beginning, Sarah Kate didn't seem to mind the therapy. She was allowed to watch movies during heat and massage time, and she enjoyed the undivided attention from her team of therapists. Sometimes her therapy included using a stander, which meant she was able to play with toys on the tray. On the first day of the second week, however, things went south. The therapist was trying to get her to walk with canes and she Did. Not. Want. To. I was encouraged to leave the gym, so I retreated to the waiting area which was out of sight but not out of earshot. My sweet little girl didn't cry - she GROWLED. I've never heard that sound from her before or since. It was a battle of the wills between the therapist and my preschooler. Eventually, the therapist won, and after that Sarah Kate's progress was amazing. 

Once the initial three weeks were up, she continued daily therapy with her regular therapist at home, returning to Birmingham once or twice a week, until May, when she returned to Birmingham for another three week long intensive session. She continued to receive therapy almost daily for several months.

January 2013 will mark seven years since the SDR, and although progress comes more slowly now than it did in the beginning, it does still come. Independent walking began about three months after the SDR (spring of 2006), standing from the floor without assistance about a year later (summer of 2007), and being able to stand still (a surprisingly difficult skill) a little over a year after that (summer of 2008). It took almost three more years for her to master stepping up and down a curb without holding onto anything, but she did in the early summer of 2011.

The only intervention Sarah Kate has received since her SDR (other than PT and a series of AFOs) is a few rounds of Botox and one round of serial casting - most were within the first 18 months following the surgery. The last round of Botox was less effective than the prior ones, so we feel we've reached the end of the line on Botox. We make the trek to Birmingham to see the orthopedist (now a four-hour drive, as we moved in 2008) about once a year, and though he hasn't ruled out orthopedic procedures in the future, he wants to wait a little bit longer before we decide.

We have no doubt that SDR was the right choice for Sarah Kate. Although she still has a distinctive gait, if you see her in a crowd of kids she won't stand out right away. She still can't jump, and although she runs, it's in the loosest form of the word, and she is very slow. When she tries to run or walk fast, her right arm shoots out to the side like a "chicken wing" because the brain just isn't able to process all of the motion her body requires. 

We never dreamed Sarah Kate would be able to play sports, but she just completed her third summer on swim team and opted to play softball this past spring - not Miracle League or special needs softball, either - regular rec league. She loved it so much that she is playing again this fall. Her hand-eye coordination is surprisingly good, enabling her to hit the ball consistently, so although she doesn't score (or for that matter, make it to first base) often, she has a lot of RBIs to her credit. It's a dream come true for me.

Videos of Sarah Kate:
Progression from pre-SDR up to August 2010.

Spring softball 2012 (1 of 2).
Spring softball 2012 (2 of 2).

Monday, September 17, 2012

Ben's bike - an update

Back in May, I told you all about Ben's new bike.  You can check that post out here.

Ben's bike is a Mini Tike from Trailmate.  Below is the picture from the website.  Unfortunately, it doesn't come in red anymore...just yellow. 

As I said in my previous post, we made a few adjustments by adding a back rest and straps on the pedals, but that was it.  Total cost came to around $500.  Yes, more expensive than a bike with training wheels but WAY less expensive than the typical adaptive bike.

In the end, we had to make one more adjustment.  The trike was really tippy.  Scary tippy.  Ben actually tipped it for real once, but luckily, my dad was standing right there when it happened and was actually able to catch him.

I wasn't happy with the tippyness factor so we asked my cousin's husband (a welder) to help us out.  He widened the back wheel base by about 6 inches as you can see in the picture below.

It really made all the difference and we haven't had any tipping issues since.
Ben absolutely LOVES his bike.  And has even decided that he's OK with it being yellow.

Thursday, September 13, 2012

Ben and school - Part 3

(It's looking like this is going to be four-part series.  And just in case, here are Part 1 and Part 2.)

The week before school started I contacted the school to set up a meeting so we could meet Ben's aide and discuss in full detail how we expect school to work for Ben.  Before the meeting, I drafted up the following document and sent it to the resource teacher to share with whoever will be dealing with Ben this year in any capacity.  This is what I sent:

Background on Ben

Ben has cerebral palsy, CP for short.  CP is an umbrella term used to describe conditions that relate to brain injury that cause problems with movement and posture.  CP can affect a person's ability to walk, talk, sit, eat and think.   The most important thing to remember about CP is that it affects every single person who has it differently.  For some with CP, the condition is barely noticeable.  For others, it can be so severe that the person relies entirely on others for help with mobility, eating and self-care.  Ben is somewhere in the middle.  In some ways, I would say that Ben's CP is mild as he can talk, eat, and use his hands.  He is also smart as a whip.  However, when it comes to walking, Ben's CP is more in the moderate range as he is not completely dependent on a wheelchair to get around but yet is unable to walk without help. 

Specifically, Ben has spastic diplegia CP.  “Spastic” means that the muscles affected have increased tone or tension.  “Diplegia” means that both legs are affected.

Medical History 

In January 2012, Ben went to the Shriners Hospital in Montreal for a Selective Dorsal Rhizotomy (SDR).  This surgery was performed on his spine and over 40% of the nerve rootlets that send signals to his legs were cut.  This was done to “stop” the incorrect signals that his brain was sending to his legs.  After the surgery, Ben’s gross motor skills were basically back to ground zero as he couldn’t walk, crawl or sit anymore.  He spent an additional 6 weeks there for an intensive rehabilitation program. 

Our hope is that this surgery will allow Ben to eventually be able to walk without any aids indoors and use forearm crutches when walking outdoors and on uneven ground. 

Gross Motor Skills 

This is the area where Ben is primarily affected.  Ben can crawl, sit up, stand with assistance and walk with assistance.  He is also able to transfer himself between these positions.  Ben can walk very well with his walker as well as with quad canes.  He is currently learning how to walk with forearm crutches.

At school, there will be 3 options available for Ben:

1.     Walker – This is to be used when outdoors or for walking longer distances.  His walker allows him to walk at a reasonable pace and keep up with his classmates.  However, one of our goals is for Ben to transition from using his walker to using forearm crutches and we want to limit its use to the instances noted above.

2.     Quad canes – Ben is very functional with his quad canes.  However, he is much slower with these canes.  Also, if there are lots of kids around and he gets knocked over, he would definitely fall and could perhaps get hurt (unlike his walker where if he holds on, he won’t fall all the way to the ground).  However, these canes force Ben to walk with a better gait as well as to use his own momentum.  They also help strengthen his core and improve his balance.  It would be great if these canes could be used whenever possible such as when going back and forth to the bathroom and when walking other short distances.

3.     Wheelchair – Ben’s wheelchair will be at school.  I expect that it will be used to transport Ben back and forth to school.  It is also there for fire drills or the occasional field trip.  However, we would prefer if his wheelchair is not used on a day-to-day basis at school.

The overall goal is to allow Ben to keep up with his classmates and get around the school and playground on his own while also pushing Ben to improve on his gross motor skills at the same time.

In the Classroom 

Once seated in the classroom, Ben should not be treated any differently than any other child.  His fine motor, speech and cognitive skills are all at or above his age level.  That said, in order for Ben to use his hands optimally, he needs to be well-seated.  His chair needs to be at the right height for the table and his feet need to be touching the floor (or a footstool).   

For floor time, Ben will be able to sit on the floor with his classmates.  Because Ben wears AFO’s (ankle-foot orthotics, we just call them braces), it is difficult for him to get into “criss-cross” sitting on the floor and therefore he will “w-sit”.  This is not an optimal position for any child to sit in as it can cause strain on the hip sockets but as long as the time spent on the floor in this position is less than a half-hour at a time, Ben’s physiotherapist has said that it is OK.  We do not want Ben sitting in a chair at floor time as we want him to be on the same level as his classmates as much as possible. 


This is an area where Ben struggles.  While he is completely potty-trained, he needs help with his clothing when going to the bathroom.  He can stand up to pee with support (i.e. with his canes or walker to hold on to, or even an adult’s hands).  He also needs help to get onto the toilet for bowel movements.  He can sit on the toilet unsupported as long as he has a ring reducer to sit on (which we will provide).

It should also be noted that like other children, Ben tends to wait until the very last minute to go to the bathroom.  However, unlike other children, he can’t run there quickly.  At home, we tend to watch for signs that he has to go (like lots of squirming) and encourage him to go before it’s too late!

Ben also needs help to get dressed and take his shoes on and off.  That said, when possible, Ben should be encouraged to help with these tasks as long as it’s not cutting into time on the playground or the classroom.


Ben has been referred to extra-mural for both physiotherapy and occupational therapy.  Ben and I met with the extra-mural PT in July and agreed that she would see Ben at school once every two weeks. 

I would like for the extra-mural OT to review Ben’s seating in the classroom and provide recommendations, if necessary.  However, I really do not want Ben seated in his wheelchair in the classroom.  At this time, I don’t expect that Ben will need regular OT for his fine motor skills, however, the OT may be able to assist with Ben’s self-care skills. 


1.     Allergies

Ben is allergic to eggs and animals.  When he eats eggs or touches animals, he usually gets a rash or a few hives.  This can be treated with Benadryl.  Ben has not yet been exposed to nuts or shellfish on instruction from his pediatrician. 

Previously, Ben did have an epipen however this is no longer necessary.  Ben has never had an anaphylactic reaction.  Even if Ben does ingest something prepared with eggs (such as a cookie), he doesn’t always react, and if he does, it is usually just a hive or two. 

2.     Heat

As is common for children with CP, Ben is extremely sensitive to heat.  There is nothing really to be done for this, except to be aware of it and to avoid it where possible (i.e. keep Ben in the shade if outdoors on a hot day).

To be continued in Part 4...

Tuesday, September 11, 2012

Walker transformation

Ben's first walker that we actually purchased ourselves was the Gator (pictured below).  It is a fairly large and heavy walker.  We initially chose it because it works better outside than other walkers we had tried.  (In the end, we ended up also purchasing a Nimbo as his "indoor" walker...mainly due to the messiness of Canadian winters.)
Well.  Ben LOVED his Gator.  LOVED it.  But...he has now outgrown it.
There is not a bigger Gator.  The next one up is actually the Crocodile.  And it only comes in Yellow.  Not Red.  And Red is Ben's colour.  He wants EVERYTHING to be red.
Regardless, he needed a bigger "outdoor" walker.  So we went ahead and bought the yellow crocodile (used) from his CE Classmate "Sarah".  And he absolutely refused to use it.  REFUSED.  Wouldn't even try it out.  Unless I painted it red.

So.  Off I went to the hardware store to find some red spray paint.  Painting it is actually the easy's NOT painting the other parts of it that was the hard part.  Plus I had to remove all the stickers that Sarah had put on it.  It probably took me 2 hours to remove the stickers and then tape up the sections that weren't to be painted.  And about 3 minutes to paint it.

I did 2 coats and then let it dry over night....and then spent probably another hour taking all the tape off.  But doesn't it look awesome?

And the most important part?  Ben LOVES it.  And very happily goes everywhere with it.  It's now "him".

Monday, September 10, 2012

The treadmill

After my last post, I've had numerous questions about the treadmill that Ben is using.

Because of this great blogging community that we are in, I was able to purchase the treadmill used from Amy of A Life Less Ordinary.  Her daughter had used it as part of her rehab after she had SDR and Amy was kind enough to offer it to us as Ben was having SDR last January.

I quickly took her up on her offer.  Logistics, however, proved a bit difficult as they live in Virginia and we live in Canada.  After agreeing on a price, Amy boxed it all up and and headed over to FedEx for a quote...well...they quoted $1,600 to ship it! 

So shipping was obviously out!  Luckily, I remembered that my parents would be driving their RV back from Florida to Canada in May and would hopefully/maybe be driving near where Amy lives and be able to pick it up for us.  As it turned out, they were going right through Amy's city/town and it was super easy for them to pick it up and bring it home to Canada for us.

For some reason, it took us months just to get it out of the box.  I'm not sure why...but we just couldn't seem to get around to it.  Then finally, a few weeks back, I came down after sleeping in a bit on a Saturday morning to find it set up in my family room.  And guess what?  Ben LOVES it! 

I think he's been on the treadmill every day since.  Sometimes just for a few minutes as part of something else or sometimes for up to a half hour while he watches a video on TV.

Now, to answer everyone's question.  The treadmill came from a company called Carlin's Creations.  You can go check them out if you want.

James' mom over at Jump in for James has already contacted the company for information so once she finds out some info, I'll try to post it here...or at least link up to her blog.