Friday, February 24, 2012

Old photos

I have been backing up all my photos to disc recently and came across a few from when we started ABR 5 years ago - my how things have changed in 5 years - especially Corbin. Corbin had just turned 3 when we started doing ABR. Take a look at this machine application - he is covered - there is no room to spare!!!

For those of you who have no idea what ABR entails this is the way he has basically slept for 5 years. Under all this bulk is the ABR bladders and foams that attach to a machine that simulates the manual ABR movement. And yes Corbin has "worn" the machine for 11-12 hrs a night, most nights for 5 years.

And this is how well he tolerated ABR - it would put him to sleep. We have been really lucky with this as a lot of children don't tolerate it as well. 5 years later he's not so tolerant as he feels it takes up too much time and he is missing out on valuable play time...

Only the veteran families will remember the towel construction shown above. Lots of changes all round.

Where did that 5 years go???

Thursday, February 16, 2012

Intensive Physiotherapy?????

After a CP child has Botox injections they are meant to get "intensive" physiotherapy to make the most of the temporary weakening effect the Botox has on the muscles with which it is injected into. Firstly it would appear that the Orthopeadic Surgeon forgot to put a referral in to the public health physio for Corbin. So after I made a few queries earlier this week we got to see a physio today. She was not a specialist in paediatrics nor Cerebral Palsy nor was it a physiotherapy session much to my dismay. Instead I have been given another crash course in basic physiotherapy and sent home to do the work much to Corbins disgust. So once again it is up to Mum to be the big ogre and make Corbin do stretching that hurts and is quite frankly another interruption from just being a child as far as Corbin is concerned.

Oh and by the way our next appointment is in 2 weeks time. I knew I would have to be doing a fair bit of work but I didn't think I would be doing it all and so much for "intensive physiotherapy".

Sometimes I manage to laugh about things like this but this time I had to sit down and cry...

I would like to know will I ever be finished being a physiotherapist, an occupational therapist, an ABR therapist, a wheelchair technician, a nurse, a teacher aide, and his advocate so I can just be his mother?

Friday, February 10, 2012

Only one day in Hospital

That part is all done anyway. The anaesthetic and Botox went well and we were all done and home by 5pm with a litre of panadol for the pain.

Corbin was as brave as can be - probably because "new" Blue Teddy got to go to theatre with him (I was a little worried that "old" Blue Teddy was far to old, smelly and grubby to go to theatre so I got "new" Blue Teddy out of the cupboard, who was purchased years ago to replace old smelly Blue Teddy but didn't cut the mustard as far as Corbin was concerned so has stayed in the cupboard since.

In preparation for the experience I had explained to Corbin that the anaethesist would put a little mask over his face and would get him to count or say the alphabet or something and he would slowly go to sleep. So in theatre Corbin, being as clued up as most 8 year olds, refused to open his mouth and say anything. Obviously the intention was in his mind was that if he didn't count then he wouldn't go to sleep. Needless to say he was not impressed when he woke up in recovery and I told him it was all over. He said "But I didn't say anything.." and then he packed a sad. Bless him.

Now its the wait and see game and of course the part when I get my nursemaid, physio therapist & occupational therapist skills into action (some of my many talents as the mother of a CP child).

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 ...