Saturday, June 4, 2016

A bike for Joshua

Over the years, I have tried quite a few bikes for Joshua.
I've had a number of different tricycles.   I got him a regular bike with training wheels.   He has had two different sorts of balance bikes.  We have even had a more specialised trike on loan.   But nothing so far has been 100% suitable for Joshua.
He had not been able to learn to pedal any of the bikes we had, and the balance bike was not a huge success either.  Although he can move himself along on it, he was always learning off to one side and it was very awkward looking.   He never wanted to do it for long as it was so much effort.
I kept hoping it was just a matter of time for him to learn to pedal one of the options we already had, but years have passed and we had still not made much progress in this area.

I decided it was time to look into getting Joshua something more specialised.   One of the motivating factors in doing so was the fact that the Physio recommended bike riding as being beneficial for Joshua in his post surgery exercises.   And another is the fact that Joshua still has funding money from the Better Start for Children with Disability Scheme.   This money needs to be used by his 7th Birthday or it's gone.  So I asked his Physio about getting him a bike of his own that was properly set up to meet his needs.   She was very quick to organise a trial for us of a bike she thought would be suitable.

Although the bike we trialed was the size up from what Joshua needed, it was very exciting as the potential for him to ride it was very clear, with him doing a few unassisted pedals.

Happy Boy at his Bike Trial

We got the quote made up and I was able to have his Private OT approve the purchase to be made using his Better Start funding.    Then we had to patiently wait for it to arrive!

The big day finally arrived yesterday, and Joshua got his very own bike!   

His bike is a Bodycycle Edge Tricycle in the 16 inch size.   Luckily, it was also available in his favourite colour - Green!    Bodycycle bikes are available with a number of different options to meet various needs.    

Here is the happy boy on his new bike!

Most obviously, it is a 3 wheeled tricycle because Joshua does not have the balance for a 2 wheeler.    I had initially thought that Joshua may need some back support but it turns out that Bodycycle have these great pommel seats (Which we got to trial when we did the trial)  They are nice and wide, so much more supportive for him than a regular saddle seat, which he tends to slide off to one side of.   He won't slide off this seat, and the pommel also helps him to keep his legs apart.  His right leg in particular tends to "internally rotate" which means the knee tends to lean in resulting in positioning that is not so great for trying to ride.  

Pommel Seat

In terms of pedals, Joshua is not able to keep his feet on regular pedals.  Try as he might, he just can't.  So he needs some help with that.  These pedals allow his feet to be strapped on, with the support that goes around his shoe and a heel strap that fastens behind his foot.   This lets him focus on learning to pedal and not on having to keep his feet on the pedals.   Another thing we got we the "pedal leveller".   That is the cord you see that connects the pedals.   That helps to keep the pedals level and they make it a bit easier for him too.  

Support Pedals and Pedal Leveller

There are a number of different handle bar options available but we decided to go with the ones that offer the most adjustability.  They can be adjusted in both height and depth, so they can go up and down or closer to him or further away.  

Adjustable Handle Bars

The other main feature is the Rear Steering Assembly.  That is the pole at the back that allows me not only to push him on the trike, but also to steer it just by moving the pole left or right.    This is essential at the moment until he learns to ride by himself.  

Rear Steering Assembly
It is a great little bike for Joshua, and even with me doing all the pushing, it is still great exercise for his legs.     He is trying to pedal a bit however, and can do a few pedals here and there.    If he is on a downhill slope he can use that to his advantage to try and get himself going, but overall it is a work in progress for Joshua to learn to pedal his bike by himself.   I'm very hopeful though, that now that he has a bike set up with what he needs, that he will be able to work on meeting that skill.      

He is very happy with his green bike!  

This is how he tries to pedal on his own so far:

And with a bit of help from the downward slope of the driveway.  In case you can't tell, in his excited squeal he is saying "Look at me!".  

So glad this little man has the chance to try and ride a bike like other kids!

Friday, January 29, 2016

Strayer Procedure

In December last year, Joshua had a surgical procedure known as the "Strayer Procedure" or a Gastrocnemius release.  

There are two muscles that make up the calf, and they are called the soleus and the gastrocnemius.  The gastrocnemius is the larger of the two muscles, and they combine to form the achilles tendon at the back of the ankle.  Joshua's gastrocnemius muscle was too tight, causing what is known as a gastrocnemius equinus contracture.  For some time now we had been working on trying to remedy this with the use of an AFO (ankle-foot orthoses or leg brace) as well as stretching, exercises and serial casting and botox.   None of these strategies were effective in improving Joshua's equinus contracture, nor did they prevent it from getting worse.   Essentially, the tightness in Joshua's calf muscle was preventing him from having normal motion through his foot and causing him to walk and stand on his toes.  The unnatural walking pattern was very rough on his shoes, with him wearing out shoes within days to a few weeks if lucky.  It can also cause long term problems with the muscles and joints to continue walking with poor form.  For this reason, we made the decision to try the surgical option sooner than later, as the longer these problems are allowed to persist, the harder it can be to re-learn a better way of walking.    

Joshua's foot prior to his surgery- A Gastrocnemius Equinus Contracture caused him to walk and stand on his toes

The strayer procedure involves making an incision in the calf and locating the gastrocnemius tendon, which is essentially then cut.   The leg is then casted with the foot in a neutral position (at a right angle to the leg) which will cause the muscle to stretch.  As the tendon heals, it will heal in this new, elongated position, effectively lengthening the gastrocnemius muscle.   The procedure is done under General Anaesthesia and takes about an hour to complete.   Joshua was required to have an overnight stay in hospital following the procedure.  

The surgery itself went well, however Joshua is never a happy camper with general anaesthesia and always wakes up mad as hell, screaming the hospital down.  When he has had same day procedures, he usually screams until he is allowed to go home and co-operates with nothing and nobody.  In this instance however, since we were staying in overnight, we were taken to the children's ward from recovery, where Joshua proceeded to scream the ward down for a few hours.   He wanted nothing to do with his hospital bed, and the only place I was able to put him down was in his DoBuggy (his special needs stroller) so it was a good thing that I had it with us.   I think it felt familiar and safe to him, unlike a strange hospital bed.  

Resting in his DoBuggy Post Surgery

A bright spot during Joshua's hospital stay - Some laughs and smiles with one of the Starlight Foundation's "Starlight Captains"

He did sleep in the hospital bed that night though, with me squished into the bed with him.   (Fun times!).    The hospital stay seemed pretty unnecessary though, as other than Joshua's initial post anaesthesia rage, he was fine and didn't really need any special care.      He did not seem to be in any pain or require any pain relief, even though this would be expected following the surgery.  He was not allowed to weight bear at all for the first 2 weeks after the surgery, which was a nightmare.   He was trying to stand almost immediately after waking from anaesthesia and it was a really tough gig trying to stop him.   We got a walker on loan from his physio to try and give him some mobility without weigh bearing, and we used his stroller a lot to keep him contained but I am sure he walked on it way more than he should have!  

Being contained in his stroller at home to rest and recover while not allowed to walk

After 2 weeks he went back and was again placed under anaesthesia to have the cast changed and cast made to mould him for a new AFO.   With such a short time between visits,  Joshua apparently remembered what happens in theatre and was not happy about visiting again so soon!  

The Starlight Captains once again did their best to improve Joshua's mood with music and bubbles

Once that was complete, Joshua was officially in a weight bearing cast.  It didn't slow him down at all and he happily ran around on it without a care.

Cheeky Boy enjoying Christmas in his weight bearing cast

He had to remain in that cast for a further 4 weeks, bring him to a total of 6 weeks in a cast.   Being in a cast for 6 weeks is no easy thing, especially at this very hot time of year.  Joshua loves swimming, so it was very hard for him to not be allowed to swim and have his activities restricted to avoid getting his cast wet or sandy etc.  

I was relieved to go and get the cast removed, and was expecting Joshua to be his normal self considering he had spent the 6 weeks in the cast seemingly pain free and as active as ever.  To my surprise however, the moment he tried to take his weight on his castless leg, he collapsed to the ground and was unable to walk.   Sadly I did not bring his DoBuggy to that appointment so found myself having to carry him!  LOL.  He is on the smaller side for his age, but believe me - He is getting heavy!!  Immediately following the cast removal we had to go and have his new AFO fitted, and he was very teary and upset for the remainder of our time at the hospital that day, and it was evident that he was indeed in pain once the cast came off.        

The scar on Joshua's calf following his surgery

He went home that afternoon though, and was swimming in our pool as he usually would (but not taking any weight on his foot on the ladder of the pool).    He began to take a few tentative steps here and there but mostly he would hop around on one leg as his main mode of transport.

We are now at Day 10 since the cast was removed and he is now walking more than he is hopping.  He was initially unable to take any weight or steps on his leg when he was not wearing his AFO, but as of yesterday he began to take a few steps on bare feet and now today on Day 10, he has taken a number of steps with bare feet.  

The great news is that his foot is wonderfully flat, with his heel touching the floor.   No more toe walking.   He still needs to get his confidence up with his walking, but our job from here on out is to strengthen his leg muscles.  They have been weakened during the surgery so he now needs to build up his strength and try and achieve the best possible function from that leg.   We will be starting tomorrow by taking him to the pool where he can walk in the water and exercise his leg with the water assisting him with weight bearing.   (Our pool at home is too deep for this, so we need to take him somewhere else).    We also have some other play based suggestions from the physio to help exercise that muscle and make it strong again.
At this stage he has to wear his AFO for 8-10 hours a day.   He will be reviewed again by the surgeon in early March and we have another appointment with the orthotist about a week after that to change his current AFO, which is fixed, to a hinged AFO.

So overall, things have gone well with the surgery and things are looking positive, but we still need to  continue with the recovery and physio to get the best results.