Wednesday, February 1, 2012


To do or not to do that is the question...

I guess you all have heard of Botox - its that poison that rich people inject into their faces to temporarily get rid of wrinkles. Well for those of you who don't know its that same stuff that they inject into the muscles of children with Cerebral Palsey to temporarily "deaden" their muscles with the intention of reducing the high muscle tone that a lot of CP kids have to give them a shot at getting some function in the childs limb(s). Corbin is scheduled to have Botox injections in 4 different areas on his right leg on 9th February.

After discussion with the ABR team, I have been battling with the orthodox medical professionals for the past 12 months to get them to consider some kind of surgery on Corbins right foot which is seriously "deformed". After 5 years of me getting "growled" at for not taking the surgery options they have recommended, I now can't get them to consider any at all. The Orthopeadic surgeon will not consider any surgery until we have tried Botox because supposedly this will give us a small window of opportunity to see whether or not surgery would benefit Corbin or not (reading between the lines - whether or not he has any chance at all of walking independantly or not). This is a huge turn around from the man who wanted to do "bilateral aductor releases and a partial neurotomy" 5 years ago, then turn around and say the aductor situation had settled a year later and was no longer required only to suggest an "achilles release" then 12 months later followed by the recommendation of releasing the tendon in the calf area (sorry I can't remember its proper name - I should because this is the one Jayden had done). Now they are saying his hamstrings are the major problem. I just want them to leave all that alone and look at his feet. Disabilities are so frustrating it would drive a saint to drink.

Anyway what they do in our neck of the woods now apparantly is to try Botox in the areas they think may benefit(?) from surgery, assess the results (ie if there is any hope of Corbin ever walking independantly), then if they think there is they refer the child to a "Gait" clinic in Auckland for a full assessment of all the different problem areas and then do one massive big carve up in surgery to fix it all at once!!! Right!!! Then send us poor saints(??) home to deal with the aftermath.

So hence the question - to do or not to do?????

What is my hesitation and anxiety you might ask. Firstly through ABR I have learnt that there is far more involved in Corbins inability to walk than just his muscle tone. I think I am hoping, rather optimistically, that he has enough function there now that it is primarily his high tone that is impeding his ability to walk but I guess I am not overly confident hence the anxiety I feel right now.

Secondly Botox is a poison and there is definately no benefit in that, thirdly Corbin has to be anethesised to have it done, again no benefit and finally what if they give up on him - there are only so many times that you can hear what you don't want to hear before all optimism and hope is trampled in the dirt.

What on earth am I doing ????? The great Leonid would probably tell me I'm a fool and give me a lengthy monologue as to why I'm a fool. But then if I chose not to do Botox the Orthopedic Surgeon would probably give us the boot and because he is the only one available in Invercargill this is where I continually end up stuck between a rock and a hard place... The joys and frustration of it all ...

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