Today is the Southern Zone Schools cross country - this year held in a paddock at Woodlands. Which is not at all wheelchair accessible for Corbin to even go and watch. The only option was to put him in the Mountain Buggy which isn't really an option at all for an 8.5 year old boy in front of his classmates.
Cross Country is always a great buzz of excitement for all the School Children. A great buzz of excitement for Master Corbin too but for a completely different reason to the rest of the school. He is staying at home today and his good wee friend Sam (who is not going to the Cross Country because of an injury) is coming over to play. In Corbins words "I love Cross Country day..."
Friday, May 25, 2012
Friday, May 18, 2012
Mothers Day part 2
No relaxing facial this year - I have instead a new bracelet made with love by Master Corbin (a perfect match to the binnoculars he made me for my birthday), a double DVD with the movies Half Past Dead and Half Past Dead 2 on it (which have obviously been chosen by a male who has no idea of my taste in movies) and a mother daughter token which says on the back "good for a day together" which is really quite cute except for the fact that I really don't think I could handle a whole day with my pre-pubescent moody daughter at the moment!!! I might have to keep that token and use it after her teens....
Saturday, May 12, 2012
Mothers Day
Ah its that time again for those of us in the most undervalued and underpaid occupation of all - motherhood!!! I wait with eager anticipation of the wonderful gifts my darling children have made for me this year. I think that with an almost 15 year old who has an afterschool job that its about time I got a decent present. I'm thinking a relaxing facial or something might be nice.
Sunday, May 6, 2012
More Botox......
The Orthopedic surgeon wants to do more Botox. Oh dear. What have I started?
It has been 3 months since Corbin had 29 injections of Botox into his aductors, hamstrings and calves. The effects can last up to about 6 months - In my opinion the effect of the Botox has all but gone for Corbin - I do conceed that perhaps the only lasting effect has been in his hamstrings - there is still a little extra range here. His feet position has returned to pretty much normal or should I say pre botox, ie the left foot rolling in so that he stands on his the top of his arch area in weight bearing and the right rolls out (and toes point in) so he stands on the outside of his foot in weight bearing. In the walking frame his gait is again all over the place with significant pelvic twist occurring to help him step.
The physio still believes the Botox has been a huge success - to me it depends on what you define as success. I do not believe that the fact that he had the ability to walk in severe pain and discomfort for very short lengths of time with his heals down, for approximately 2 months maximum is a success. Was there an improvement in function - NO. Was there a long term improvement in anything - NO - As I said his walking gait is pretty much back to pre botox.
The Surgeon is impressed with what the physio said happened, but all of a sudden he is very concerned about Corbins left foot (the left leg being the better of the 2) and the fact that he rolls the foot position so far inwards during weight bearing that he is actually standing on a bone in his foot that he shouldnt be. So this is the main reason he now wants to do more botox to release the left leg in the calf area to allow him to get his ankle at 90 degrees angle without rolling in inwards to relieve the pressure on this bone that he stands on. I might add here that he has stood in weight bearing on the left leg exactly the same way for at least 2 years. During this time we have seen the same Orthopedic surgeon at least 5 times and this is the first time he has even noticed, much less shown concern, about the position of his feet (despite me specifically pointing Corbins right foot position out to him 12 months ago because this is what I wanted him to look at and consider doing something about in the first place). I just don't get it. It seems to me that there is something different the medical powers that be hone in on every time we see them. It doesn't give me much confidence.
Over the past 15 years my experience with mild-moderate cerebral palsey is that the kids can change from one hour to the next (let alone week to week or month to month or 6mthly appointment to appointment) in flexibility, range of movement, standing stance and walking gait. This can all change due to fatigue levels, hunger, level of agitation, level of concentration, body and room temperature etc etc etc. How on earth can an Orthopedic surgeon make an accurate assessment as to what and where botox (or surgery for that matter) is required when all they see is a 5-10min window of the big picture??? Maybe it is as I am inclined to believe - they are only guessing. It is very much a case of lets try this and see what happens. I can't help but think where is this going to end. Initially, not so long ago, the Orthopedic surgeon (and a neurological specialist as well) did not believe that Botox would do anything for Corbin, now after the first round we see that it did reduce his tone to allow him to use the flexibility he has always had to get his heals down, and legs straight for a short amount of time - now he wants to try using Botox to correct Corbins foot position. Ah the saga continues...................
It has been 3 months since Corbin had 29 injections of Botox into his aductors, hamstrings and calves. The effects can last up to about 6 months - In my opinion the effect of the Botox has all but gone for Corbin - I do conceed that perhaps the only lasting effect has been in his hamstrings - there is still a little extra range here. His feet position has returned to pretty much normal or should I say pre botox, ie the left foot rolling in so that he stands on his the top of his arch area in weight bearing and the right rolls out (and toes point in) so he stands on the outside of his foot in weight bearing. In the walking frame his gait is again all over the place with significant pelvic twist occurring to help him step.
The physio still believes the Botox has been a huge success - to me it depends on what you define as success. I do not believe that the fact that he had the ability to walk in severe pain and discomfort for very short lengths of time with his heals down, for approximately 2 months maximum is a success. Was there an improvement in function - NO. Was there a long term improvement in anything - NO - As I said his walking gait is pretty much back to pre botox.
The Surgeon is impressed with what the physio said happened, but all of a sudden he is very concerned about Corbins left foot (the left leg being the better of the 2) and the fact that he rolls the foot position so far inwards during weight bearing that he is actually standing on a bone in his foot that he shouldnt be. So this is the main reason he now wants to do more botox to release the left leg in the calf area to allow him to get his ankle at 90 degrees angle without rolling in inwards to relieve the pressure on this bone that he stands on. I might add here that he has stood in weight bearing on the left leg exactly the same way for at least 2 years. During this time we have seen the same Orthopedic surgeon at least 5 times and this is the first time he has even noticed, much less shown concern, about the position of his feet (despite me specifically pointing Corbins right foot position out to him 12 months ago because this is what I wanted him to look at and consider doing something about in the first place). I just don't get it. It seems to me that there is something different the medical powers that be hone in on every time we see them. It doesn't give me much confidence.
Over the past 15 years my experience with mild-moderate cerebral palsey is that the kids can change from one hour to the next (let alone week to week or month to month or 6mthly appointment to appointment) in flexibility, range of movement, standing stance and walking gait. This can all change due to fatigue levels, hunger, level of agitation, level of concentration, body and room temperature etc etc etc. How on earth can an Orthopedic surgeon make an accurate assessment as to what and where botox (or surgery for that matter) is required when all they see is a 5-10min window of the big picture??? Maybe it is as I am inclined to believe - they are only guessing. It is very much a case of lets try this and see what happens. I can't help but think where is this going to end. Initially, not so long ago, the Orthopedic surgeon (and a neurological specialist as well) did not believe that Botox would do anything for Corbin, now after the first round we see that it did reduce his tone to allow him to use the flexibility he has always had to get his heals down, and legs straight for a short amount of time - now he wants to try using Botox to correct Corbins foot position. Ah the saga continues...................
Thursday, May 3, 2012
On dangerous ground...
In NZ alot of primary schools have a program called Bible in Schools where the children are taught about the basic stories in the Bible. Corbins school has Bible in Schools and last week the Bible in Schools teacher must have been telling the children that God can heal people and told the class of a child he knew whos asthma was healed and a story about his own knee problem being healed by asking God through prayer. Corbins teacher informed me this morning that Corbin had said he was going to ask their Bible in Schools teacher (Mr B) if he could ask God to heal his legs. This is what I mean by dangerous ground. At 8 and a half Corbins innocense means he believes it is that simple. My darling Corbin I have asked God a million times to heal your legs and I'm still waiting - my only wish is that it truly was that simple for us.
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