Friday, February 24, 2012

21 Months - Progress Report

Today has been one of those days where Joshua has done a bunch of new things all in one day.  We have been fortunate that Joshua always continues to make slow and steady progress with things, but usually, slow and steady means that next week, he will do things a little better than he did this week, and so on, until a new skill is achieved.  Today has been a day of surprises where he has done several new things in one day and it is pretty exciting!

Perhaps even better, is the fact that he showed off in front of an audience!  Today we were visited by a visiting physiotherapist from Adelaide, along with his regular physiotherapist.  She comes to Darwin every 3 months to see the children that are with Carpentaria Disability Services and this is the third time that she has seen Joshua.  She is really happy with the progress that Joshua is making.  Joshua's biggest problem right now is the Hypertonia (High Muscle Tone) in his right leg.  His Cerebral Palsy diagnosis is Spastic Quadriplegia, which means that all 4 of his limbs are affected by high muscle tone.  The truth of the matter is though, that his right leg is WAY more affected than any of his other limbs.  And although having high tone in his other limbs make things more difficult for him, it doesn't prohibit him from doing things in the way that the issues with his right leg does.  I don't even feel like I can express the difference in words, to really convey how very bad is right leg is compared to his other limbs.  After touching his right leg, his left leg feels normal (even though it isn't).  The difference in tone between his two legs is really quite dramatic. And this is where Joshua's Cerebral Palsy impacts him greatest in a functional sense.  I am quite sure that if the tone in Joshua's right leg was the same as his left leg, then he would most likely be walking unassisted at this point.  It doesn't just affect him from a standing and walking point of view though, it also affects him in sitting.  His hamstrings and calves are so tight, that his right leg tends to remain bent at the knee.  This makes him very unstable when sitting on his bottom, so instead he W-sits.  I've mentioned this in another post before, and how it is not a recommended way of sitting because it can have a negative effect on the hips.  The impact of the tone in his right leg has become GREATER over time, not less.  For instance, at 12 months old, I have photos of him sitting beautifully on his bottom in long sitting (with his legs out straight in front of him).  At 21 months, this is now impossible for him without someone sitting with him holding that right leg flat to the floor or placing him in a leg immobiliser.  It is the number one thing that is holding Joshua back in terms of his physical development and the visiting physio today agrees that helping him with that leg is going to make a difference to him overall.  Last time she visited, she expressed her opinion that Joshua would be a "botox boy" and she still believes that.  Joshua is due to see the visiting Rehabilitation Team in a few weeks where it will be discussed further and it will most likely be on the cards once Joshua turns 2 in May.  (As it is not done until 2 years old in Australia).  
For the past week, Joshua has been wearing a leg immobiliser to bed.  It wraps around his leg and velcros in place, holding his leg perfectly straight, effectively stretching those tight leg muscles all night long.  I felt horrible having to do that to him, but it has not been as bad as I imagined....  He goes to bed at 7pm and most nights he has been sleeping through until about 4:30/5am with it on....   so about 10 hours....  Then I will take it off and let him go back to sleep without it.  He actually hasn't complained about it at all, and has been falling asleep without a fuss.  Thank goodness, because it is one of those things that is really for his own good even if he hates it, so it makes my life much more pleasant and eases the Mummy guilt at having to put him through that when he doesn't get upset about it.  The worst case scenario when it comes to high muscle tone like this, is that he will get a permanent contracture.  Meaning he will no long have voluntary movement in his leg.  If that were to happen, then he would not be able to walk.  So it is really important that we do these things to avoid that happening.

So, onto the exciting things that Joshua did while the Physio was here today.

  1. He stood completely unassisted for about 30 seconds maybe even longer.  By that I mean, I was supporting him in a standing position, slowly and carefully removed my hands from him and he remained standing independently.  Another child bumped past him several times trying to get to other toys, and even with that, he maintained his own balance (wearing AFOs).   
  2. We had some old phones out, and the physio was pretending to speak on the phone.  Joshua also held a phone to his ear and mimicked her.  This is the first time that Joshua has ever held a phone to his ear in this kind of "pretend play".  Usually, he just thinks a phone is a chew toy.  
  3. I sat Joshua in his little chair and asked him to stand up.  He stood up independently using the arm rests of the chair to help push himself up into a standing position.  It was hard work, but he did it, for the first time ever, without any help.  
Joshua is due to receive his posterior walker in the very near future.  The physio predicts that he will use it for a few months and then he might start walking independently, at least indoors.  He will likely still require his walker when out and about, for longer distances, on uneven ground or when around lots of other people.  And then hopefully be able to master those more difficult scenarios independently too.    
Although Joshua beautifully demonstrated independent standing today for the first time, the biggest difficulty for him is being able to transfer weight between each foot.  And it all comes back to the tone in that right leg.  Despite him now having AFOs, which hold his foot and lower leg in correct alignment, he is now compensating for his tone by keeping his leg bent at the knee while weight bearing.  This makes him unstable while walking (or trying to walk) because he lacks a stable base.  It could also be termed a "spastic gait".  

Another exciting thing that Joshua did today, is that he did some walking using a baby walker.  They are only made from light weight plastic and are really quite difficult to walk with but he did really good.  If you look closely at this video, you can see what I am talking about with his right leg...  he is not walking with his right foot flat to the floor...  he is essentially on his toes, despite having his AFOs on for positioning.  You can also see that he leans his body weight onto the walker quite a bit rather than just using it for a little bit of balance support.  This is still awesome progress towards walking though.  And motivation is always one of the biggest factors....  Joshua is so stubborn and its very hard to make him do something he does not want to do.  So it is nice that he appears to have decided that walking is something that he might like to do. LOL  Oh and he was also doing some really nice knee walking while holding onto the walker.  Which is pretty awesome too, because Joshua doesn't crawl reciprocally.  He bunny hops, moving both arms and both legs at the same time. So knee walking is pretty exciting, because he was moving both legs reciprocally (which is what needs to happen when you walk) so that is really good too.

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