Monday, October 14, 2013

Serial Casting (No Botox for Joshua...Again)

So, today we once again saw the Visiting Paediatric Rehabilitation team from Adelaide.  At our last appointment 3 months ago, it was recommended that Joshua have Botox injections.  They offered to do it that very next day, but I elected to wait three months until the clinic this week.  
When his Physio assessed him last Friday, she felt that they might not do the Botox this time, but if so, just a small dose.
Today we saw the Doctor and the physio from Adelaide and the consensus was No Botox for Joshua.  This is the second time that Joshua has been scheduled for Botox and it has been decided not to go ahead with it.  
What they are saying now, is that Joshua does have some spasticity, but that it is quite mild really, and that the real problem is that Joshua has a deformed foot.  The deformity is being caused by his calf muscle, which is too short.  The short muscle in his calf pulls up on the muscles in his foot and creates a deformity.  They feel that he will probably always have a degree of deformity in his foot but that the best way to help it, is to stretch the calf muscle.  Injecting Botox into the muscle would relax it, but they don't think this is really going to do anything much for him, they can't confidently say that we would see results by doing Botox, and that we are better off trying other ways to stretch that muscle.  He says the way it presents is more like a congenital short muscle rather than something related to spasticity.  So what happens is Joshua's leg will be placed in a cast that holds his leg in a position that stretches that muscle.  The cast will be left on for 5-7 days, removed and evaluated.  Sometimes a new cast will be applied straight away, or sometimes the casting may just be repeated at intervals of
6-12 months.  It really depends on the results of the casting.  The problem is basically being caused by growth.  As he grows, the calf muscle isn't growing with him.  Some children will need to have surgery to fix this, but he said not usually until about 8-10 years old would they do that.  And that he still may need Botox in the future, but for right now they feel the best option is to try the casting.  
So that's what we will do,  I now just need to wait to hear from the Physio about the logistics of that.  
We took Joshua last week for his annual hip X-ray and thankfully his hips are still normal.  They feel that he isn't going to have any hip problems and that it probably isn't necessary for him to continue having annual hip X-rays.  They recommend that he have another one at 5 years old, and depending on how that looks, he might not have to have another one until he is about 10 years old.  So I guess that is one less thing to do, and it's also a bit of a relief because Joshua has been a w-sitter for a long time and that is notorious for being bad for the hips, so thankfully he hasn't yet suffered any ill effects of that.  
When I get the report from the Doctor I will share what he has written but they are basically classifying him now as Spastic Hemiplegia Level 2 on the Gross Motor Function Classification System (GMFCS).  Not bad for a kid that started out Level 3 Spastic Quadriplegia. 
Over the past three months we have seen a big improvement in Joshua's speech, he now has about 60 words including a few two word combinations.  This is still significantly delayed for a 3.5 year old, but is obviously a massive improvement considering 3 months ago he was only at about 30 words.  Slow and steady wins the race.  

Friday, August 2, 2013

Thinking about the future

So, today I had to go to a meeting with Joshua's Occupational Therapist and Physiotherapist to have a goal setting/planning meeting.
I wrote down a list of goals for him and took it with me.  They were all short term goals.  I want him doing things that are age appropriate.  

I want him to walk better, we have been having an ongoing saga of crappy AFOs/SMOs.  Maybe a decent pair of braces would help him.  Maybe having Botox would help him.  But I want to do whatever we can to Improve his walking.  I doubt he will ever have a typical gait, and that's ok, just so long as we have done whatever we can to see the most improvement.  

I want him to have self help skills.  I want him to feed himself, and drink properly from a cup, to be able to dress and undress himself and to use the toilet.  He is doing pretty well feeding himself now, and he can drink from an open cup.  He just needs to practice more and work on the behavior that goes along with it (eg not deliberately tipping the water out and splashing it around on the table). He is nowhere near being able to dress himself apart from recently learning how to put his own hat on, but he has also learned to take his own shorts off so long as they are soft elastic waist shorts.  He can also put one of his croc shoes on, his left foot only.  So he is doing small things towards this goal, and I hope eventually these will be things he can manage completely on his own.  And toilet training, well that's pretty self explanatory.  I've been changing his nappies for 3 years and 2 months and I'm over it.  Even the cutest cloth bum starts to look less appealing after this long.  Lol.  I know there are people out there who have been doing this for their child for much longer, or will do it for much longer than this.  But I want out of this literally crappy task.  Joshua has shown willingness to sit on the potty or toilet, he understands when I tell him to sit on his potty.  He has just never done anything.  He doesn't communicate the need to go, or seem to realise when he has wet his pants when wearing undies.  I see the potential there, just waiting for it to all fall into place.  I guess my "end goal" for that is for it to happen by the time he starts school.  He still has about 18 months before that happens, so fingers crossed he will nail it by then.  

I want him to do normal three year old things like ride bikes. I want to find a bike he can master.  I want him to learn to ride his scooter.  I want to be able to go to the park with other families who are bringing their kids bikes for them all to ride around on and have something age appropriate for Joshua to ride, instead of just a baby bike.  As he is getting older I'm starting to feel conscious of the fact that his peers are getting to an age where they are going to notice things like the fact he still wears nappies, the fact he has brought a babies bike to the park etc, and I don't want to give kids anymore reason to tease him about anything than what they already have.  I want him to be able to fit in with his same age peers as much as possible and being able to do something as simple ad ride a bike/trike with other kids is all part of that.

I want him to learn concepts that other kids his age know.  Colours, shapes, counting, body parts.  I feel particularly discouraged when I see children who are far more physically affected than he is but who can indicate in various ways that they know these things.  Why can't Joshua?  He does know a few things, but definitely not to the level he should.  

I want him to be able to do things like puzzles and shape sorters.  Ok.  I know you can get through life ok without ever doing these things but they are just things that kids are *supposed* to do.  From what I have seen of preschool, they often spend the first 10 mins or so doing puzzles...  Mum or dad can stay and do a puzzle with their child before leaving...  What happens if your kid can't do a puzzle.  Kids are supposed to be able to do puzzles.  And keep in mind, I'm just talking about super easy basic puzzles at this point...  Not interlocking puzzle pieces or anything like that...  I just want him to pick up a damn puzzle piece with a big chunky knob on it and put it into the correct place on the puzzle board. A "baby" puzzle.  

Speech.  I want him to talk.  He has a few words.  Maybe around 35 now.  Single words.  No sentences except to say Goodbye to something.  Eg "bye bye car".  Which is pretty much how the majority of his verbal communication goes.  Waving and things and saying bye bye to them and pointing out cars and trucks.  It's good.  It's better than nothing. He is showing he has the potential there for more speech and hopefully it comes together for him.  But looking around at other kids his age (and much younger), talking in sentences, singing songs, recounting stories.  It pretty much sucks that my kid can't do any of that, or even express his most basic wants and needs.  I want to be able to pick him up from day care and ask him what he did today and him tell me about his day.  What he played with, who he played with, what he ate for lunch.  Anything.  

So, they were the goals I went in there with.  But apparently they didn't just want to discuss short term goals, they wanted to talk about long term goals too.  What do I want for Joshua in the future.  
Isn't it obvious?  I want the same things that every parent wants.  I want him to grow up, live life doing all the regular things that everyone else does and be happy doing so.   
I said I wanted him to have the skills to live an independent life.  They said what does independence look like to you?  Living in a shared home?  Being able to live alone?  What about relationships, what sort of relationships do you think he will have?  How involved do you see yourself being?
I mean really what the F*ck.  Do they not think he will be capable of living a normal life when he grows up?  Do they really think he will have to live in shared accommodation with other disabled people?  I mean there is nothing wrong with that really, but hello, I'm hoping he will grow up, get a job, move out, get married.  That sort of thing. It was a confronting conversation, and yes, I cried.  And as for asking how involved I will be, really, what the hell.  I'm his Mum, I will do anything for him that needs to be done no matter how old he is, until the day I die.  
Joshua is 3 years old.  I don't know what his future holds.  Physically, he is doing well, and I think he will be able to do anything he wants to do physically, even if it look a bit "quirky" as his OT said. My biggest worries for him are more around the speech and cognitive areas.  
I always hoped he would be of normal intelligence.  When he was younger I could fob this off a bit saying it was hard to tell, because all the ways of measuring cognitive ability are things that also require language or fine motor skills and if your child struggles with those things it's hard to get an accurate picture of their cognitive ability.  Now he is older, it is clear that he doesn't have the cognitive ability of a 3 year old, in my opinion.  He doesn't understand things that other kids do, he doesn't behave the way other kids do.  And I think surely, if he really had the mind of a normal 3 year old locked in there, despite his physical and language difficulties, he'd be able to show it.  He'd know colours, and body parts and all of those things and he'd be able to express that knowledge non verbally.  Pointing at the correct things when asked, choosing something of the right colour etc. 
Part of me still hopes he can "catch up".  Part of me wonders if having hopes like that is just delusional.  
I don't know if he can live an independent life, and do all the things one typically does as adult.  There is still so many question marks, and so much wait and see.  But I can't worry about those bridges until we get to them, and I can still hope that we never get to them.

I just want him to be happy.

Thursday, June 6, 2013

The Technical Talk from Joshua's Appointment

I got a copy of the letter today that the Rehab Doctor from the visiting clinic sends to Joshua's Paediatrician.  I never did get a copy of the one from his last rehab appointment, so I am going to ask his Paed for a copy next time we see him, cos I really like getting the goss.  LOL

So the letter says:

It was a pleasure to catch up with Joshua, a three year old boy with an initial diagnosis of quadriplegic cerebral palsy, although he is behaving more like right hemiplegia.  I do note that he has some slight increase in muscle tone on the left side, but the more problematic muscle tone is across the right side.  On Assessment today I noted that he had quite a lot of resistance to passive stretch on the right side.  In the upper limb this occurs mainly across the elbow with an initial catch at 90 degrees elbow flexion, but getting full range in extension.  In the lower limb he gets catches at his right adductor, right hamstring and right calf muscles.  He is also pronated in the foot, indicating tight tend-achilles on that side.  He does not tolerate an ankle-foot orthotic and I think what occurs is when his gastro-soleus is stretched mid-stance it tends to push his knee into extension (the so-called plantar-flexion, knee-extension couple), which is stretching his hamstring muscle.  To disengage this effect, he flexes his knee so that he is walking up on his toes while in the orthotic.  

Given the findings, I think he would respond to Botulinum toxin injection into the right calf, right hamstring and right adductor muscles.  I had a discussion with his mother about it today.  We did have a spot on the toxin theatre list for tomorrow, but his mother preferred to think about this a little more.  I think this is reasonable and in the meantime we have established a plan for stretching with the use of Zimmer splinting (for the hamstring) as well as night splinting (for the calf) to assist with this issue.

 I plan to book him into the next clinic for Botulinum toxin injection.  I am certainly happy to see him sooner if required. 
So thats all the big words for what I said yesterday, for people that like big words :)

Tuesday, June 4, 2013

Back on the Botox List

This morning, we had another appointment with the Visiting Paediatric Rehabilitation Team from Adelaide Women's and Children's Hospital.  They come up every 3 months, and they alternate which Doctor comes up each time.  There is 2 of them, and the last time we saw this particular Doctor, he recommended Botox for Joshua.  At the time, Joshua wasn't yet 2 years old, and here, they don't do Botox until the child is 2.  So he was put on the list to have the Botox done 3 months later, when the team next visited and he was 2 years old.  When the three months had passed, and we went back to see the team (The other Doctor this time) they said they no longer recommended Botox, as Joshua's muscle tone had improved so much they didn't think it was worth doing.  It certainly had, and I was really glad that he didn't need to have it done anymore.
I have never loved the idea of Botox, it makes me very uneasy, both for the fact that it is a toxin and is not free of potential negative side effects, and for the fact that here, it is their preference to perform the Botox under Anaesthesia on young children who cannot lay still.  I'm not in love with either of those ideas, but also not in love with the idea of giving him painful injections while he was awake either.  I just don't love it.
Last time, I was prepared to go through with the procedure because at that stage, Joshua wasn't walking, and I saw the Botox as something that could potentially help him to walk independently, and if that was the case, then clearly we should do it.  Its a risk vs benefit thing, and being able to walk independently is a huge benefit.  Now however, Joshua is already walking, so the obvious benefits don't seem as great.  This time, its more about helping the quality of his walking.

As I mentioned in my last post, the Orthotics we got for Joshua after his last appointment with the Rehab team, haven't been helping him, and in fact, made him walk worse.  We are now booked back in to have new orthotics made, and it sounds like he will wear an SMO (the short brace) on his left foot and an AFO (the longer one, like he used to wear when he was younger) on the right foot.  And that he will wear an AFO on his right foot at night too.  We haven't had much success at all with orthotics with Joshua.  His very first pair worked ok, but since then, we haven't had much luck.   The Doctor today told me he thinks that Orthotics alone will not help Joshua's walking.  That the brace will provide a stretch to the calf muscle but that stretch then causes his leg to internally rotate because of the effect it has on the hamstrings, which are also tight.  He feels he needs the Botox as well to loosen them all up and prevent the negative flow on effect.  He said he thinks his leg will get worse otherwise.  He even said he could get him in tomorrow to do the Botox, but I said No.  LOL.   I need longer than that to mentally prepare for it, and we are also going to try the night bracing again, both with an AFO and with the leg immobilisers that we have used previously.  We got good results with those last time and I think they played a big part in us avoiding the Botox last time.  The team comes back in October, and he is on the list for Botox then, but in the mean time we will go hard with the night time stretching and see how we go.  I still hope we can avoid it, at least for a bit longer, but I suppose if they still recommend it in October we will probably do it.

Overall though, they are very pleased with Joshua's continued progress, and again, the nature of his diagnosis seems to be up for discussion.  Originally he was diagnosed with Spastic Quadriplegia, due to the involvement of all 4 limbs.  I was then later told that they felt Spastic Diplegia was more accurate.  Now today, the Doctor said he really feels that maybe Right Sided Spastic Hemiplegia is how he is presenting. LOL  He still does have some mild tone issues on his left side but that the left side is basically moving and functioning in a way that looks pretty typical, whereas the right side is where you see all the awkward posturing of both the hand and leg.  He said probably in about another year, it might be a lot clearer if its hemiplegia vs diplegia etc.  But he is really thinking Hemiplegia now.    When Joshua was a baby, 8 months old, I felt Hemiplegia would be his likely diagnosis because he had such a marked difference between the use of each side of his body....then over time his legs seemed to become more problematic.  In any case it doesn't really matter, or change anything, its just a bunch of words that describe the way his Cerebral Palsy impacts his body, but its still interesting.

So thats it for now, I guess we will just wait and see what happens :)      

Friday, May 10, 2013

Bikes and Braces

Some of this is a bit of a repeat for those of you on my Facebook, but I need to do a proper update here :)

So first of all, Bikes.  Like most children his age, Joshua wants to ride a bike.  Running my own Family Day Care, I don't have a shortage of bikes for him to try, but none of them seem quite right.  Of the six different tricycles I have, none of them seem to work for him.  The main problem with the trikes is that the pedals seem to be too far forward for him to reach and have enough power to actually pedal.  He doesn't know how to pedal yet, and it will take time for him to learn, but he can't even start to learn to pedal if he can't get his body right on the bike.  So, at the suggestion of a friend, Joshua and I went to our local dump shop (yes, that is a shop at the rubbish dump!!) and had a look at the bikes there.  I ended up getting him a regular bike with training wheels to try.  I thought that it might be better because the location of the pedals is different and may be easier than the tricycles.
As you can see, he does look quite pleased with our dump shop purchase...

However, it turns out that this bike wasn't quite right either.  The pedal placement also seems awkward on it...  especially for his right foot...  like they are too close this time, instead of too far away!  He has a bit of internal rotation of his right leg, which combined with his spasticity, just make it really hard to get his right leg on that pedal properly.  I tried using velcro to secure his feet to the pedals, but it clearly wasn't comfortable for him and made him upset.
So it left me feeling quite bad for him.  He has been showing so much interest in wanting to ride a bike but I didn't know what to do to help him meet this personal goal of his.  I wasn't sure if I just needed to give him more time and he will figure out how to use a regular bike of some sort, or if I needed to start looking into getting him an adaptive bike of some kind.   When we saw a visiting Occupational Therapist last year, she had mentioned we could use our Better Start Funding to get him a special trike, so the option is there, but I obviously don't want to mess around in getting him a special bike and then in 6 months time he manages to master a regular one, it would be a bit of a waste really.
So the other day I had a talk to his Occupational Therapist here about it.  I asked her if they had any bikes there that he might be able to try.  I told her I wasn't having any luck with the regular ones I'd tried, and that I wasn't sure if he just needed more time or if he does need a special bike, so if we could try one that they have, I'd have a better idea if that was the answer to my problems or not.
She told me that yes, they do have some bikes he can try and she will incorporate it into his sessions.  She told me that it can be really hard to find the right bike for our kids, and that even with the ones they ordered, they ordered them thinking they'd work well for most of the kids they see, but it hasn't turned out that way, and that getting things exactly right for an individual child can be really tricky.  She says she thinks he might need a special bike and that the Variety Club (a children's charity) are really good about funding bikes for special needs kids.  She said that although he can sit on a bike without support, he is probably putting so much effort into keeping himself upright that its then just too much to try and incorporate his legs and pedalling into the equation as well.  But that a bike that supports him better will make it easier for him to use his legs and learn to pedal.  Which makes sense I suppose.  So it is something we will start to look at in his therapy sessions, and go from there.  So its a bit of a *watch this space* when it comes to bike riding!

Another thing that is coming to the forefront a bit now is that Joshua has poor core strength.  This hasn't really been a focus until now, I suppose because other more functional things have been our priority...  things like using hands, learning to walk etc, were more desirable goals.  Now that he is walking and using his hands, it seems it is time to start working on trying to improve the quality of those movements, and according to his physiotherapist, all of his movement problems can be related directly back to poor core strength.  When Joshua walks, you can see his torso is slightly hunched over, his right leg rotates inwards, and then his right foot is also not nicely flat on the floor.   In my last blog post, I described the orthotics, or SMOs, that Joshua was prescribed to help his foot.  We got them, and they haven't been great.  I wasn't happy with them at all because, firstly, they were yet again damaging the skin of his foot, and secondly, they were causing him to toe walk really bad on his right foot.  He doesn't complain about wearing them at all, but he didn't look good at all.  Even after sending him to day care wearing them, and then sending him without, the day care staff were commenting to me that his walking was better without them.  Its taken a little while though for me to be able to get the Physio to take a look and tell me what she thinks.  She agrees that they are not good.  And yet again, I'm basically left dismayed that we just get crappy crappy braces made here in Darwin.  Seriously.  It is all I ever hear...  how they braces Joshua has been given are so crap compared to the good ones that get made elsewhere.  She said they were too wide at the front, they don't conform to his feet enough and do not offer any support for the arch of his foot which is what he really needs, and the toe walking is of course, no good at all.
She is going to call the Orthotist and set up another appointment for him to get new braces made.  She will come along this time and 'supervise' the casting to make sure that she casts him in a way that will make sure the final brace will support his natural arch and tell her to make them better fitting.  So...  new braces.  She also said she thinks he might be better off going back to a full AFO on his right leg and just keeping the small SMO on his left leg.
What she also said, is that all this comes back to his core strength.  As you probably know, muscles are all connected.  When a muscle tightens, there is generally an opposing muscle that relaxes.   Joshua is a bit tight in the hips and his leg rotates inward.  But she says if his abdomen and glutes were stronger, then his hip would be pulled outwards more.  You can try that by putting your hand on your hip and tensing your bum muscles.  You will probably notice that when your pull your bum muscles in your hip rotates outwards slightly and then when you relax again, your hip goes inwards again.  This is a lot more exaggerated in Joshua, but she is saying if we can strengthen his abs and glutes, this will naturally work towards pulling that leg back into a more normal position, and that will all basically flow on down to his foot.  She also says that even with his fine motor stuff, she feels the core strength is affecting him, like that he keeps his arms locked to try and stabilise himself and then once he tries to move his arm he loses his stability and then the activity gets too hard so he gives up and wants to move away or throws the activity in frustration.

So thats it basically, she wants us to work on his core strength and says if we can improve that then we will see flow on improvements in all areas.

In other small news, Joshua finally had a meal time assessment done a few weeks back.  There were no concerns.  The speech therapist said he struggles most on mixed textures (e.g., cereal and milk together in the same mouthful) and that he coughs a bit when he gets a mouthful of different textures, but nothing to really be concerned about.
We are also starting to see Joshua saying a few new words, and I feel that we are right on the verge of a big speech explosion, so fingers crossed that I will have many more positive things to report when it comes to speech in the coming months.  Today I encountered my first particularly awkward moment when we were at the shops and I was buying Joshua yet another sippy cup...  we really need to get him off bottles...  I did it not long after he turned 2, but we've regressed again...  and he has been shocking at biting all the bottle teats or soft silicone straws or spouts on other cups so I was really wanting to get him a cup with a hard spout that he couldn't bite chunks off and that he'd accept for his milk instead of a bottle...  Sadly, the shop I went to didn't have much of a range so I basically chose the only cup there that I thought was suitable... and weirdly, even though its a bit of a dumb cup in my opinion, he seems to really like it.  It has cars on it.  He sat holding it in the stroller and saying car, car and then a woman in front of us at the check out apparently thought he was saying "pow pow" so I clarified he was talking about the cars on his cup, so then she looks at the cars and says "show me the cars, oh yes, there they are, what colour is that one?"  Yikes.  I guess that is a sort of normal question to ask a child of his age, but its not something he can answer.  I kind of wondered for a minute what I should do.  After an awkward silence she ended up answering her own question...  maybe she just thought he was shy....   LOL  So he cried when we had to give the cup to the lady at the checkout, and he cried again when I took it from him to buckle him into his car seat, so he seems fond of the cup.  He also accepted it tonight with some milk for bed.  He didn't drink as much milk as he would have from a bottle, but thats fine, the same thing happened last time where the cups naturally caused his milk intake to drop and his food intake to increase....  but he drank some milk from it without melt down of the century, so maybe this cup will work...  

Joshua's birthday is soon....  10 days until he turns the big 3.  Keep your eyes out for his annual Birthday video :)

Tuesday, February 26, 2013

3rd Appointment with Visiting Paediatric Rehab

Today we once again attended the Visiting Paediatric Rehabilitation Clinic for Children with Cerebral Palsy.  This team visits from the Women's and Children's Hospital in Adelaide and comprises of a Doctor, Occupational Therapist, Physiotherapist, some other lady that takes notes (hah!) as well as a member from our hospitals Orthotics department and our Physiotherapist from Carpentaria Disability Services.  Combine that with myself, Rod, Joshua and Amelie, and that small room was pretty busy!
I am pretty sure I was sent a letter after his last appointment summarising everything and I hope they will do that again because it can be pretty hard to follow everything with multiple conversations going on with all those people and juggling both kids.
So, the last time we saw the Team was in June last year.  At that point in time, Joshua was walking with his walker, could cruise furniture holding on and stand unassisted for a few seconds.  But despite that, the Dr wasn't willing to speculate whether or not Joshua would walk on his own in the next year.  I told him that he would, and he sort of smiled at me pitifully.  So I left that appointment thinking right Joshua, you need to be walking by the time we come back to see this guy.   And he took his first independent steps 6 weeks after that appointment.  
Joshua has now been walking independently for 6 months, and he doesn't use his walker anymore.  He can walk forwards and backwards, he makes a pretty good attempt at jumping, and he runs.  His biggest Challenge walking wise is uneven surfaces, stairs, kerbs, raised door frames etc.   He is definitely more unstable on his feet than a typical child of his age, but boy does he get around.
The Doctor noted his presentation at his last appointment and was suitably impressed that he is now walking on his own.  He said he is doing great for someone that has only been walking for 6 months.
They were also quite impressed by my not quite 8 month old baby and her freakish levels of mobility, pulling to stand and cruising around everywhere and trying to get into all the toys they had there to engage Joshua.  LOL.    
So my main concern that I wanted to address with the team today was Joshua's right foot and the fact it turns so that he walks on the side of his foot rather than the sole of his foot.  Before he started walking independently, he was wearing Ankle Foot Orthotics (AFOs) but once he started taking independent steps they restricted his movement too much and we took a break from them.  Once he was walking better, I tried them again but didn't really find them satisfactory as they were marking his skin and were not correcting that issue.  I had discussed it with his Physio of course and she had speculated a few possibilities, but basically, I wanted to speak to the experts and find out their opinion on what we needed to do as far as orthotics went.
As part of the appointment they watch him do things and also have him lay on the bed so they can stretch him and examine his muscles and tone.  Today while doing that they were throwing around the words "variable" and "Dystonia" which I find interesting.   Cerebral Palsy can affect movement in a variety of ways, the main one being spasticity, or muscles being too tight, but Dystonia is another way, and I've never really considered Joshua to have dystonia because that is generally related to involuntary movement.  
Here is a definition I have pulled up for Dystonia:

What is Dystonia?Dystonia is a movement disorder that causes the muscles to contract and spasm involuntarily. The neurological mechanism that makes muscles relax when they are not in use does not function properly. Opposing muscles often contract simultaneously as if they are 'competing' for control of a body part. The involuntary muscle contractions force the body into repetitive and often twisting movements as well as awkward, irregular postures. There are multiple forms of dystonia, and dozens of diseases and conditions include dystonia as a major symptom.        

So, I'm not sure but maybe more the "awkward, irregular postures" rather than "repetitive, twisting movements".   I'm hoping they might write something about that in their report.  
I also heard the Doctor loosely refer to Joshua as being a Level 2 on the Gross Motor Function Classification System (GMFCS).  At his last appointment they had him down as a Level 3.  (1 is Mild, 5 is Severe).  I'm not sure if Joshua will ever be a 1, but I am very happy with a 2 and the fact that he has improved so much in his physical abilities that he has been able to be downgraded.  

They are really happy with the progress that he has made, and the Doctor said to me "He is going to do well".   That is a positive projection for the future if you ask me!  And they can be pretty hard to get out of these Doctors!  ;)  

So, about his legs, we need to watch and see what happens.  At this stage, they don't think Botox will help him much, and that managing his issues with orthotics only is the way to go right now.
He previously wore AFOs, which looked like this:

 Those aren't his, (they are a lot nicer than his HAHA) just a picture I pulled from google, but you get the idea if you haven't seen them previously, they go up the leg quite a bit.  
Their recommendation now is not AFOs, but SMOs, or Supramalleor Orthotics.  They are much shorter and look like this:

Here is a picture of a little boy wearing them, so you can get an idea of how they will look with his shoes:

These will be much more comfortable for him I imagine, especially in the Darwin heat, not having to wear such long socks.   So the Orthotics department will be giving me a call to go in and get that organised.

I said to the Doctor that my concern was whether or not his leg will get better or worse as time goes on and the Doctor said without missing a beat "It will get better, its our job to make sure it doesn't get worse".  Umm ok.  LOL   But good news anyway, so  basically the plan is, orthotics and watch it, and there is still a possibility of Botox in the future if it heads that way, but not at the moment.

So basically things are looking really positive for Joshua.  Our biggest issue right now is really probably his speech.  He still doesn't say all that much, certainly nothing that helps us to determine his wants or needs, but fingers crossed it will come in time.....   Hopes and prayers for a speech explosion...  LOL  

And thats it...  I will do another update if I do get a report from the Doctor...And again when we get his SMOs.  :)