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!

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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. http://youtu.be/kFNCtnkPfzE

Spring softball 2012 (1 of 2). http://youtu.be/syG52pC30tA

Spring softball 2012 (2 of 2). http://youtu.be/nUpQYhfglJM

 

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.

 



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

 

Diagnosis 

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. 

Self-Care 

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.

Extra-Mural

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. 

Other 

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...

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 part...it'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".

 

 

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.

At home therapy

Now that Ben is almost 5 years old (just 11 more days of being 4) and so mobile, we are finding it much easier to do physio at home with him.  Actually, these days we are opting more towards doing therapy at home as well as fun physical activity vs. traditional physiotherapy.

Our main physical goals for Ben in the next year is to improve his independent standing, learn how to use forearm crutches and maybe even starting taking some real independent steps.  One of the main ways that we work on core strength and balance is to have Ben use his quad canes at home regularly.  When using his quad canes, he has to do ALL the work.  Unlike when he uses his walker and momentum does so much.

In order to encourage more quad cane walking, we started setting up "courses" for him to follow while using his quad canes.  We use painters tape (masking tape would work as well) to create arrows that show him where to go.  We also use a sharpie to number the arrows.

Here is a video of him following the arrows around the house.  For this course, the arrows were numbered all the way to 100 and when he got to the end, there were 2 Hershey kisses for a prize.  The course went all through our house, out on our deck, up the stairs and even over and under beds.



Over time, this "course" has evolved.  It went to including little notes along the way like "have a seat and rest for 2 minutes" or "it's time for a little snack, ask mommy for a banana and a glass of milk" or when walking by a mirror "make a funny face in the mirror".  Those notes started to motivate him when just following the arrows started to get boring.

We've also started to include other therapy type activities such as walking on his treadmill.  Check out his treadmill walking below:


Today, we did another course.  This time, both Ben and Daniel had to follow the course and they both had tasks they had to complete in order to earn puzzle pieces.  By the end, they had collected all the puzzle pieces and could put it together. Ben's first task was to "walk around the island using your forearm crutches...each turn around earns 1 puzzle piece for a maximum of 5 puzzle pieces".  Daniel's was similar but instead he had to hop on one foot around the island.  Ben also had to walk on his treadmill, earning 1 puzzle piece for each minute.  They both had to print their names on our easel and draw a happy face (fine motor practice).  They then had to identify Canada, the USA, and Madagascar on a map, earning 1 puzzle piece for each country.  Ben had to walk upstairs holding onto my hands while Daniel had to walk upstairs backwards.  We even incorporated chores by having them earn puzzle pieces for cleaning up their bedroom.

The whole course took me about a half hour to prep and took them over an hour to complete.  We got things done, did a lot of physio and had a lot of fun at the same time.

Now, they are asking for a treasure hunt.  I'll put my thinking cap on tonight and make something up for tomorrow.  I'm thinking that there will be clues that tell them where to go for the next clue and work them throughout the house.  But I will have them complete tasks in order to EARN the clue.  The hard part is to figure out something for the "treasure".

So...my question to you is...how do you make phsyio fun at home? 

First day of school - update

Well.  The first day of school is now complete.  Thank the lord, because I don't think I can handle any more of this first-day-of-school-with-twins-and-one-with-CP stress.  Seriously.  Enough already.

I was going about enjoying my morning on my own.  Then the phone rang.  It was 11:30 and already their teacher was calling.  She assured me that both boys were doing well, but that Ben was complaining of being tired.

Apparently, they did more walking than normal this morning.  They did a tour of the school, went to music class and of course, went outside for recess.  It was now lunchtime and she was wondering if it was OK for Ben to use his wheelchair when they went back outside to play.

(Some background:  The plan is for Ben to use his walker for the most part.  It's to be used for all outdoor time as well as for longer distances inside the school.  His quad canes are also there for use for shorter distances like to the washroom, water fountain or library, which are all about 20 feet from the classroom.  His wheelchair is also at the school.  However, it is only to be used for fire drills and field trips.)

Well.  To be honest, I didn't know what to do.  As Ben's mom, I know that he tires much more easily than other kids his age.  I also know that he often complains that he is tired, but that if motivated can walk A LOT more than he lets on. 

I was really conflicted.  But I held my ground.  I really didn't want to set a precedent on his first day at school that it was OK to use the wheelchair.  I want him to WALK at school.  I want him to push his limits just a little bit each day.  I want his endurance to improve. 

But, of course, I then went on to stress for the next 2 hours that I had made the wrong decision.  1:30 couldn't get here fast enough!

Turns out, I made the right choice.  Ben's aide admitted that he was playing them and they almost fell for it!  He did great with his walker outside after lunch and they are starting to see what he can do.

I am so glad I held my ground.  Phew.  First hurdle over with...I wonder how many more of these "decisions" I will have to make this year...

Ben and school - Part 2

Over the summer months, there was no contact with the school or district whatsoever...exactly as I had expected.

However, we did get to meet with the PT (I'll call her Lisa) that will work with Ben at school as she attended one of Ben's regular PT sessions in order to meet with him as well as discuss the level of intervention I wanted to be provided.

Before meeting with Lisa, I had always been quite anti-PT-in-school.  I know that this isn't the norm and that most parents want as much services at school for their children as possible.  I guess that I felt that I really didn't want Ben singled out and pulled out of class.  Ben is just like his peers when it comes to cognitive, speech and fine motor skills and I really felt that the best place for Ben was in the classroom with all of the other kids.

Well...that was before Ben had SDR.  And before I realized how tired Ben still gets and that PT at home after school was not likely going to work as well as I had envisioned.

However...I was still skeptical.

Until I meet Lisa.

I can't even tell you how much I liked her, how much Ben responded to her.  The first meeting went great.  She got to see Ben work on his independent standing as well as his forearm crutch walking.  He totally performed for her.

After she saw what Ben could do, we talked about how much intervention I wanted for Ben.  She suggested that she see Ben once every other week (this is the most she can offer due to her case load).  She also talked about how beneficial it would be for his Aide to see him at these sessions in order to incorporate what they are working on in his every day school routine.

We also discussed how the next 12 months is a critical year for Ben as he continues to progress as the SDR and how focussing on gross motor skills during kindergarten and grade one will not take away from the learning he'll do in the classroom...basically because she could easily tell that he is above-age-level when it comes to letters and numbers, etc.

So.  In the end we agreed that she would seem him once every two weeks at school.  And I felt more than happy with that arrangement.

To be continued in part 3...

First day of school!

I just love this picture of them so much!  They got up well this morning, had breakfast, got dressed and all ready for school.

Drop-off was painless.  I really can't believe how well it went.  They each chose a table to start at...Daniel chose an alphabet puzzle and Ben chose to the drawing table (because as he told his aide, "I'm really good at drawing"...gotta love the confidence!).  Then they both waved and said "bye Mommy, bye Daddy" and that was it.  Easy-peasy.

Now, I'm counting down the hours til I can go pick them up and hear about how their first day went. 

Ben and school - Part 1

(As I was writing this post, it got really long!  But I don't want to leave anything out...so I'm going to split it in 3 parts (I think)).  Here is part 1.)

As I said in my last post, Ben and Daniel start kindergarten tomorrow.  And as most of you already know, Ben has CP and some gross motor challenges that make going to school a little different than it is for his typically-developing brother.

It's been an interesting process working with the school in the year leading up to today.  In our school district in New Brunswick, Canada, kindergarten registration for public school occurs in October of the year preceding the start of kindergarten.  Once a child is registered, there are a few events during the year to get the family and the child ready for school.

In early November, there was a parent information night.  I mostly found this night to be waste of time...at least for us.  The focus was on what a typical 4-year-old should be able to do.  Because both of my kids have been evaulated "to death", we pretty much know what a typical child should be doing at 4-years-old.  However, I do believe that many parents have no idea so this information was likely quite helpful to them.  The point was for the parents to identify where their child might be lagging behind and then of course, work on this area in the next 10 months before school started.

After this meeting, I introduced myself (and my other half) to the school's principal and explained our situation.  She assured me that Ben would be assigned an Educational Aide at school based on what I said, but invited me to schedule a meeting with herself as well as the resource teacher, if I wanted one.  Of course, I took her up on her offer.

That meeting happened the next week.  I believe that both the principal and vice-principal attended as well as the resource teacher.  They gave me a tour of the school and we just talked about Ben and how the process would work.  It was a pretty simple meeting but I left feeling pretty good about the school and the people that work there.

In late November, Ben and Daniel both attended a 1-hour "intro to kindergarten" at the school.  This was open to all kids that had registered.  It was held later in the afternoon (after the "real" kindergarten kids had gone home) in the kindergarten classrooms.  Parents stayed in the classroom with their child(ren) and the kids got an intro to what kindergarten might be like.  The teacher read a story and then they moved through three different work stations (tables) and did a different activity at each one.

Over the winter months, all kids registered for kindergarten undergo a half-hour assessment.  This assessment looks at their cognitive, social as well as fine and gross motor skills.  After the assessment, the parent gets mailed a report card on how they did.  Basically, the child is given "red", "yellow" or "green" for each area.  Green means go - the child was assessed as age-appropriate for this area.  Yellow means "needs attention"- perhaps the parent should spend some time working on this with the child,  and Red means "needs help" - as in perhaps you should seek professional help such as an occupational therapist.

Ben got all greens except for gross motor which was basically "not assessed". And Daniel got all greens except for a yellow in fine motor (which was not unexpected).  To be honest, I was absolutely thrilled with Ben's assessment.

In June, all children registered for kindergarten attend another kindergarten try-out.  However, this time, the children stay behind in the classroom with the teacher while the parents have an information session elsewhere in the school.

In anticipation of that try-out, I called the school to schedule a meeting to talk in more detail of how school will work for Ben.  We had our meeting the week before this try-out.  This time, I attended along with the principal, the vice-principal, the resource teacher, a kindergarten teacher (it turns outs she is their real teacher for this year), and Ben's private physiotherapist.  I also brought the boys along as well as their babysitter as I wanted them to see Ben and what he could do. 

The real point of this meeting was to have them prepared to deal with Ben for the try-out session.  We talked about Ben's gross motor skills, the seating arrangements, playing on the playground as well as toileting. 

Our babysitter and the kids left after I felt that they had seen enough of what Ben could do.  Then we talked in more detail about Ben's abilities and challenges. 

Overall, it was a very informal meeting.  No forms were filled out and no papers were signed.  Again, I was reassured that Ben would have an aide for kindergarten.  It seemed very strange to me that there is no formal "IEP" process that I keep reading and hearing about from everyone else in the states and even in other parts of Canada.  However, Ben's PT has attended lots of these types of meetings in the past and she thought the meeting went great.  She thought the people were great and that they asked really good questions.

At the end of the meeting, I was told to call the school the week before school starts to have one last meeting and hopefully meet the aide that would be assigned to Ben.

The try-out occured the next week and it went really well.  Both boys enjoyed it and there were no issues whatsoever.  I should point out at this stage that we are keeping the boys in the same class at kindergarten.  I'll likely do a post on why we chose this another time.

So that was it for the preparation year.

To be continued in part 2...

New beginnings

Yep.  It is the night before some big changes around here.  You have probably already guessed it...Ben and Daniel start public school tomorrow.  Everyone is excited and ready...lunches are packed, clothes are laid out, and backpacks are by the front door.

I'm hoping that this big change in our family life will also mean a few changes in my life.  I'm hoping to blog more (that wouldn't take much as I haven't posted since June!), cook more, work more and basically just do more of the things that I've been wanting to do since those 2 boys arrived almost 5 years ago.

I have lots of topics and things that I want to blog about.  I want to tell you about how Ben's school year will go (at least how I hope it will go), I want to tell you about all the progress he's making, and I want to show you all the cool things that he's been working on at home.  But I won't do that tonight.  Tonight, I will just tell you that we had an AWESOME summer. 

This was our first summer with our trailer and we were out in it almost every weekend all summer long.   This summer, we...


Played in the water...

 

 

 

Went swimming...

 

 

 

Climbed on cool rocks....

 

 

 

Started using forearm crutches...

 

 

 

 

Played with friends....

 

 

Had fun with our brother....

 

 

And went on LOTS of bike rides...

 

 

 Plus a million other things.

I can't wait to start blogging here more often.  I hope that you all haven't given up on me...and still want to read what I have to write.

See you tomorrow...I'll be uploading "first day of school" pics as soon as I get home from dropping them off!

5 Months Post-Op (cross-post)

On Monday, we will be five months post-op. WOW. Amazing. I keep thinking back to a year ago when we were just starting to explore the idea of Ben having a rhizotomy and here we are now, already 5 months post-op. The surgery now is just a memory...

Ben is continuing to slowly improve. He is getting stronger and his endurance is vastly improved compared to when we arrived home in early March. Compared to before surgery, here are some changes that we've seen:

1. Endurance - Before surgery, Ben could hardly walk in his walker or with his canes for more than 5 minutes. His muscles were so tight that it was just too much effort to do more than that. His endurance had been much better but as his muscles got tighter and tighter, his endurance really suffered. In May, we went to Florida for a family vacation and I was thrilled with his walking endurance. He was able to walk the entire Orlando airport with no breaks or trips in the stroller. This is the first time he has been able to walk so far on his own. He still tires much more easily than other children his age as it is still a lot of work for him to move his body, but we are thrilled with how far this has come.

2. Standing - Before surgery, Ben could maybe stand independently for 2 to 3 seconds and this was not at all consistent. Lately, he's been able to stand on his own for up to 30 seconds pretty much any time.

3. Gait - His gait is a million times better than before surgery. As you have all seen, before he was high up on his toes and now his feet are flat. And he even gets his heels to hit first about 50% of the time.

4. Mobility - Before surgery, Ben mostly crawled or used his wheelchair. He was able to use a walker and quad canes but as the tightness got worse, his endurance with these decreased. Now, he hardly ever crawls. He uses his walker all the time in the house and out in public. We had a ramp installed in our garage and now he can get to the van independently, He still needs help to climb up in, but as he gets taller, he'll be able to get into the van all on his own. He is getting very good at using his quad canes but these are slow to use and they are really only used as therapy. We are now working on learning how to use forearm crutches! This is a huge deal. I envision that these will become his primary method of getting around. They aren't the perfect solution as they do result in more of a crouched gait than that quad canes or his walker, but they are much better on uneven surfaces and stairs. I do expect that it may take up to 6 months to learn to use the forearm crutches well but I'm hopeful that by next summer, he'll be really functional with them.





5. Steps - Now this is the question you are all dying to ask...is he walking on his own yet? Well. The simple answer is no. His standing and weight-shifting need to improve alot before he'll be ready to do any real independent walking, but that said, he is capable of taking a few steps on his own! And his confidence is growing...so hopefully we'll see some great improvements in this area in the next 6 months or so.



6. Strength - Most of his PT sessions with Connie (private PT) have concentrated on strengthening. Now that the spasticity is gone, it is now possible to strengthen his leg muscles that were so weak before. Another great way to work on strengthening (especially quads) is biking. And after much trial and error, we finally found a bike that works for Ben. It still needs a few adjustments (as it is a bit tippy) but so far, it is working out great.

Ben's New Wheels!

If you've been following this blog for long, then you know that it's been a struggle to find a bike that works for Ben.  He's disabled enough that he can't ride a regular bike with training wheels.  Yet, he's not disabled enough to need a full adapted bike that costs thousands of dollars.

Well.  After many trials and much research, we have finally found THE bike for Ben!  It's a Mini Tike from Trailmate.  We weren't sure if it would work and after having made online purchases that haven't worked out, we weren't willing to buy it without trying it.  Luckily, there was a dealer just 5 minutes away from where we were staying in Florida when we were on vacation a few weeks back so we could go try it out.

We only had to add a few things to the trike to make it work for Ben.  We added a back rest and foot straps (as you will see in the video) and we've also purchased a handle which we haven't put on yet.  We also have to get a hand brake put on it.  For full disclosure purposes, the bike with all the adjustments came to around $500 (I'm not exactly sure as my husband paid for it).

I only got to see Ben try it for a few minutes when we were in Florida and have had to wait 2 more weeks to see him on it again as my parents brought it back to Canada for us in their RV.  They got back home last night so we headed straight to their place this afternoon to pick it up.

Here's a video I got of Ben on it!



As you can see, he loves it!  He has just one complaint though...he wants it to be red like the picture on the website...my husband and I have decided that if he keeps complaining, we'll take the bike to be painted.  After all, most other kids get to choose the colour of their bike...so he should too!

Holiday Eve

We leave bright and early tomorrow morning for our annual family vacation to Florida.  To say that I am excited is quite an understatement.  After a very long winter of surgery, rehab and then of course tax season (my husband is a tax accountant and the deadline in Canada is April 30th), our family is ready for some quality time together. 

Whenever I mention that we're going to Florida, everyone naturally assumes we are going to Disney World....but no, we're not going to Disney.  We plan to relax!  And that just doesn't happen at Disney World...it does however happen when you just spend a bunch a time at the pool and the beach. 

Here are Ben and Daniel 2 years ago:

And then here's the whole family last year:

This year will be a different trip than the last two.  Previously, we stayed for 8 nights at a very nice hotel/resort on Fort Myers Beach.  We loved it there!  It was the perfect place for young kids.

But this year, we are spending the first 4 nights in a hotel on Clearwater Beach (just the 4 of us) before meeting up with the rest of my family (my parents, my brother, his wife, and their 2 kids, and my sister and her boyfriend) at a huge house right on the beach just south of Clearwater.   We rented a house (well...really, it looks like a mansion to me) for a week...it seems extravagant but will actually be cheaper than what we usually spend because we are splitting the cost of the house four ways. 

I'm also excited to see how Ben gets around this year.  We've decided to leave his wheelchair behind and just take his walker and a stroller.  I really expect that we will only need the stroller in the airports...and I'm even hoping that he'll walk alot at the airports too.  The house has 4 stories but has an elevator so I expect that he'll do great at the house and be able to get himself all the way to the pool and beach on his own.    It is so exciting to see him walking so much these days...such a huge change from 6 months ago.

I will try to post an update or two while we are away...but I won't promise anything!  I do promise to at least update you once I'm back home.

Independence!

Our main goal, now that we're home from Montreal, has been all about independence.  Before the surgery, walking with the walker was difficult for Ben and he couldn't last for long...but now?  Well, now, he does great and can go for longer and longer periods.

At home now, we expect Ben to get everywhere on his own.  And not crawling, but walking.  Even though our house is multi-level, we mainly hang out on the main floor that is pretty much completely accessible for him with his walker.   Not only is he expected to walk everywhere, but we also want him to do all transfers too.  Sometimes we do have to help him, but he needs to put some effort in.  We don't just carry him anymore....well, except for to and from the car...until NOW.

This week, we finally had a ramp installed in our garage.  Before there were 4 steps down to get from the house to the garage.  They were very steep steps with no railing so we had to carry him to the van.  And then of course come back to carry his walker to the van. 

Not anymore!  The ramp is pretty much finished and Ben got to try it out tonight.  So from now on, he can be independent to and from the van and will just need a bit of help to climb up into his carseat.

Check out the video!

Ben's Rhizotomy Journey

On Wednesday, we will be 3 months post-op! To celebrate that fact, I made a photo montage of our time in Montreal. Warning: You may need a kleenex!

Make a video - it's fun, easy and free!
www.onetruemedia.com

A long overdue update! (cross-post)

We have now been home for over a month!  It was a month on Monday that we arrived home....does time ever fly when you're not hanging out in a hospital!

People have been bugging me to post a blog update to let you all know how Ben is progressing now that he's at home.  So here we go!

Progress has definitely slowed since we've been home, but that was expected.  That doesn't mean that progress isn't being made though...it's just a bit harder to see.  Instead I try to focus on how different life is now than it was on January 24th (the day before surgery).

Ben now walks with his walker almost all the time...even at home.  Before the surgery, Ben mainly crawled at home, walked very little with is walker, and used his wheelchair in public places.  Now...well, Ben's wheelchair is basically gathering dust in our garage.  It will definitely still be needed (i.e. for walking back and forth to kindergarten in the fall) but is not needed near as much as before surgery.

Our focus at home is to have Ben be as independent as possible.  Sometimes it is just easier to carry him, but we are really trying hard not to do that.  We try to make him do all transfers (i.e. in and out of his tripp trapp chair at the table) and walk as much as possible.  We even make him walk up and down the stairs (with our help, of course).  We are going to have a ramp built in our garage (which will unfortunately take up one of the bays) but expect that once that's built, Ben will be able to take himself out to the van (and hopefully get into the van and even into his carseat) with no help.

Here's a great pic of a typical afternoon at our house...Daniel in (what's supposed to be Ben's) bike and Ben following with his walker.

Ben has physio 3 times each week now and OT once.  Luckily, I have Shauna (our babysitter) to help out with appointments and we only have to go to the hospital just once each week as we have Connie (private physio) come to the house twice.  OT and PT at the hospital are back-to-back on Tuesday mornings.

I've also signed Ben up for Music Therapy (thanks Danie for the information!)....but we just call it music lessons.  He's only gone once and loved it.  I'll post more details about it once I know more.

The main focus of Ben's PT sessions (and even OT) is strengthening.  I still have a goal for him of independent walking (of some kind) but we aren't forcing that issue yet.  He's just not strong enough.  There is no point in making him try and try and just fail at it.  I am hoping that by summer we will have at least a few independent steps though.

Basically, Ben just moves differently than before.  Everything he does is done differently now that he doesn't have the spasticity (i.e. tightness) to help or hinder him (yes...sometimes it did help!). 

That's about it for Ben's update....so here are some photos of what we've been up to in the month we've been home.

In mid-March, we had some VERY warm weather...like July-weather.  So here are some great shots of a water fight on our back deck.

(Flat feet!)

(Very happy Ben!)

(Funny Daniel...check the snowman in the background!)

(Happy Daniel!)

We had a great Easter weekend with lots of family time, an Easter Egg hunt, and lots of 4-wheeler rides with Grampie.



Ben playing Angry Birds with cousin Lucy.

Daniel with Uncle Jeff

My boys on Easter Morning.

Some quality brother time!

Grampie's 4-wheeler has a seat in the back that's big enough for both of them!

They just love their Grampie so much!

I even got to go out with the girls one night...this drink is what I needed on many nights at the hospital!



Home

So yeah. We're home. Been home for 10 days now already. Sorry for the lack of blog posts, but after blogging so much while we were in Montreal, I just needed a break.

There is nothing like 7 weeks in a hospital 10 hours away to make home feel like heaven. Really. I think I'm still on a bit of a high. Every night I LOVE crawling into my own bed. And every morning, I LOVE getting into my own shower. I even enjoy getting groceries and washing dishes. Truly. I do.

Daniel is beyond thrilled that we are home. He's glad Ben is here, but primarily, he's happy to have his mommy home with him. I've been working some since I've been home. I work from home so that just means working in the office upstairs while Daniel and Ben are downstairs with the babysitter. Every so often, Daniel just pops in to make sure I'm still there...and that I'm not going anywhere. And almost every day, he tells me how much he loves me being home with him.

Ben is of course, happy to be home. But you know how kids are...they just live in the moment so I don't think he's feeling the high that I'm feeling.

Myself, I love seeing the changes in Ben now that we're here. He uses his walker WAY more than he did prior to the surgery. He hardly crawls anymore. And he doesn't seem to want to w-sit. He prefers to either sit in a chair or, if on the floor, sit in criss-cross.

He is more than happy to continue wearing his braces almost 24 hours every day. I thought that maybe once we got home, he'd complain about them. But nope. He doesn't at all.

In some ways though, reality has set in. At the hospital, I almost forgot about Ben's disability. I know...that doesn't make any sense. But rehab hospitals are made for kids with disabilities. There are other kids in wheelchairs and walkers and everything is made to deal with kids with disabilities.

The weather turned very springy over the weekend. So off we went to enjoy it outside. I was so excited to try Ben on his bike. Last year, I had got him a Mobo Mini...it's a recumbent bike for kids. It was a bit too big for him last year so I thought that it work for him FOR SURE this year. Well. Nope. Not so much. I'm not even sure why it doesn't work for him, but it doesn't.

So then, the reality of having a 4-year-old that can't walk started setting in again. Yes, he can walk with his walker. But he still needs to get stronger and walking outdoors on uneven ground is very difficult still. And his bike wouldn't work for him. I ended up in tears again.

I look forward to the nice weather getting here every year. And every year, I end up in tears because playing outdoors is so hard for my child. Daniel is riding his big boy bike like crazy and Ben is sitting in the wagon watching. It kills me.

Anyways...sorry this post turned into a bit of a downer. But it's how I've been feeling since I've been home...on a bit of a high and so happy to be home...mixed with some sadness and frustration that spring seems to always bring for me.

Since the bike incident, I have ordered a big trike for him (a Kettler) that I think will work really well. Let's hope so...

So yes. I am so very happy to be home again. As Ben tells everyone, "we were in Montreal for 50 nights!" I am so happy that Ben had his SDR and that it's now over and done with. I am enjoying the progress that we've already seen and look forward to even more!

Hopefully, more regular posts to come from now on...

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