Corbin is an 9 year old boy living with Diplegia, a moderate form of Cerebral Palsy. This blog touches on what Cerebral Palsy means for our family and the lengths we are prepared to go to to give our beautiful boy a brighter future.
Friday, August 3, 2012
Time for an overhaul???
I'm just wondering whether or not anyone reads this blog at all - aside from Phil who commented a few weeks ago, thank you very much for that Phil and yes I thought it was really great news too. I'm not exceptionally computer literate but maybe I need some new stories or maybe a blog overhaul. any suggestions???
Saturday, July 21, 2012
Corbin can walk with crutches!!!
It might not be that flash and he might not be able to get that far but Master Corb now has the balance and stability to walk with crutches. I attribute this awesome change primarily to ABR.
Thanks to Advanced Biomechanical Rehabilitation Master Corbs balance has slowly been improving over the years and now with a little help from the botox allowing his feet to be slightly better platforms to stand on he has mastered it... Onward and upwards - bring on the rehabilitation!!!!
Thanks to Advanced Biomechanical Rehabilitation Master Corbs balance has slowly been improving over the years and now with a little help from the botox allowing his feet to be slightly better platforms to stand on he has mastered it... Onward and upwards - bring on the rehabilitation!!!!
Thursday, July 12, 2012
Mid Year Report
Mid year report time again. I'm delighted to say that once again Corbin continues to work above the expected level for his age in reading, writing and mathematics. The report even states that he is working at the expected level in PE - obviously this must have been adjusted to Corbins "expected" level but we'll take it none the less!
This is his teachers "general" comment at the end of the report:
"Corbin is a go-getter with a great sense of humour and a fantastic attitude to life! he is on task and focussed, he works steadily towards achieving the success criteria. Corbin is a popular friend who loves singing, dancing and participating in games. He loves doing the haka! Corbin has a great desire to achieve well and masters concepts quickly. Keep up the super work Corbin!"
Oh I'm so proud.......
This is his teachers "general" comment at the end of the report:
"Corbin is a go-getter with a great sense of humour and a fantastic attitude to life! he is on task and focussed, he works steadily towards achieving the success criteria. Corbin is a popular friend who loves singing, dancing and participating in games. He loves doing the haka! Corbin has a great desire to achieve well and masters concepts quickly. Keep up the super work Corbin!"
Oh I'm so proud.......
Monday, July 2, 2012
Why Women Can't Sleep
Does your brain ever really pee you off?
Its 4.37 am and I've been awake since 2.30am. I finally got up an hour ago because I was so furious with my over active mind!!! I have lots of stuff on the go at the moment and as a result I am wide awake running through everything I have to do over and over, again and again - which then gets the over active mind believing that there is an insermountable amount of stuff to do (I know that most mums/women will understand this). So what better to do than to get up and get some of those things that need to be done done.
First on my list for my early morning start is to do a really exciting and inspiring blog post (well its not actually first on the list because I have already put washing in the dryer, folded another load of clothes, unloaded the dishwasher, reloaded the dishwasher, made a cup of tea and checked my emails!!!) - so here it is...
WHY WOMEN CAN'T SLEEP
Its finally all explained in this one easy to follow diagram:
Every one of those little blue balls is a thought about something that needs to be done, a decision or a problem that needs to be solved.
A man only has only 2 balls and they consume all his thoughts.
Its 4.37 am and I've been awake since 2.30am. I finally got up an hour ago because I was so furious with my over active mind!!! I have lots of stuff on the go at the moment and as a result I am wide awake running through everything I have to do over and over, again and again - which then gets the over active mind believing that there is an insermountable amount of stuff to do (I know that most mums/women will understand this). So what better to do than to get up and get some of those things that need to be done done.
First on my list for my early morning start is to do a really exciting and inspiring blog post (well its not actually first on the list because I have already put washing in the dryer, folded another load of clothes, unloaded the dishwasher, reloaded the dishwasher, made a cup of tea and checked my emails!!!) - so here it is...
WHY WOMEN CAN'T SLEEP
Its finally all explained in this one easy to follow diagram:
Every one of those little blue balls is a thought about something that needs to be done, a decision or a problem that needs to be solved.
A man only has only 2 balls and they consume all his thoughts.
Tuesday, June 26, 2012
Another round of Botox
I said I would keep my blog updated regarding Corbins experience with botox but I've been a little slack blogging recently, or perhaps I should say I've been a little pushed for time lately! Anyway Corbin had his second lot of botox almost 12 days ago. This time I only counted 26 injection sights in his bilateral sural triceps and abductors only. (They chose not to do the hamstrings this time because they wanted to put the maximum dose in the abductors and triceps to see whether or not this would help the right foot that turns significantly in - which I find a little strange given the hamstrings appear to be the tightest muscle group that Corbin has)
So far the response has not been as "good" as last time, by this I mean last time he had the ability to walk (in his walking frame) with reasonably straight legs and very little twisting of his pelvis but not so this time - a small improvement yes but not as good as last time, however I would venture to suggest that this has alot to do with the tightness of his hamstrings!! The roll in of the left foot has not altered in any way and I'm still over the whole stretching thing and it still hurts Corbin in several places in his legs to walk for short periods of time and he would far rather crawl.
Maybe I am just a pessimist, but again I question what has been achieved??? Corbin can walk in his walking frame with a slightly better gait, but it still hurts him to walk therefore why would he want to walk, and his left foot still turns in. Has Corbins quality of life changed? No - in fact he will probably tell you it is worse because once again the rigorous stretching and physio is getting in the way of his play time and yes it hurts too. Will Botox miracuously make Corbin walk independantly? No. So why do we do it? I'm not too sure what an orthopedic surgeon would say to this, but as a parent its probably because I'm still hoping for some miracle.......
So far the response has not been as "good" as last time, by this I mean last time he had the ability to walk (in his walking frame) with reasonably straight legs and very little twisting of his pelvis but not so this time - a small improvement yes but not as good as last time, however I would venture to suggest that this has alot to do with the tightness of his hamstrings!! The roll in of the left foot has not altered in any way and I'm still over the whole stretching thing and it still hurts Corbin in several places in his legs to walk for short periods of time and he would far rather crawl.
Maybe I am just a pessimist, but again I question what has been achieved??? Corbin can walk in his walking frame with a slightly better gait, but it still hurts him to walk therefore why would he want to walk, and his left foot still turns in. Has Corbins quality of life changed? No - in fact he will probably tell you it is worse because once again the rigorous stretching and physio is getting in the way of his play time and yes it hurts too. Will Botox miracuously make Corbin walk independantly? No. So why do we do it? I'm not too sure what an orthopedic surgeon would say to this, but as a parent its probably because I'm still hoping for some miracle.......
Tuesday, June 12, 2012
A new family wagon
Miss Liv and I flew up to Napier on Thursday to pick up our new family vehicle. A Hyundai van that will be fitted with a wheelchair hoist to accommodate the new power chair that Corbin will be getting sometime soon (???)
We did a 3 day road trip of 1300kms and a ferry trip over Cook Strait. It was a nice little bonding time for mother and daughter. We visited Te Papa (NZ's National Museum), visited the Wellington botanical gardens, a ferry trip over Cook Strait which neither of us have ever done before, stopped at several spots between Blenheim and Kaikoura and looked at the seals that were on the side of the road, visited friends and family in Christchurch and Timaru, did a little compulsory mother daughter shopping and stopped and walked down to see the Moreaki Boulders.
I love the new van but it will take a little time to get used to the size - its a quite a change going from a little Mazda 3 hatchback to an 8 seater van. Its the same colour as my little Mazda and someone asked me if I had a new car (as I was getting out of the van at school) - dah! Noooooo my little Mazda has just grown up!!!
We did a 3 day road trip of 1300kms and a ferry trip over Cook Strait. It was a nice little bonding time for mother and daughter. We visited Te Papa (NZ's National Museum), visited the Wellington botanical gardens, a ferry trip over Cook Strait which neither of us have ever done before, stopped at several spots between Blenheim and Kaikoura and looked at the seals that were on the side of the road, visited friends and family in Christchurch and Timaru, did a little compulsory mother daughter shopping and stopped and walked down to see the Moreaki Boulders.
I love the new van but it will take a little time to get used to the size - its a quite a change going from a little Mazda 3 hatchback to an 8 seater van. Its the same colour as my little Mazda and someone asked me if I had a new car (as I was getting out of the van at school) - dah! Noooooo my little Mazda has just grown up!!!
Sunday, June 3, 2012
Happy Birthday Master Jay
It is Master Jays 15th birthday today. Wow do I feel old - I'm sure I'm not old enough to have a 15 year old. Where has that 15 years gone?
Master Jay is a very disappointed that the NZ government increased the age to get your learners drivers license from 15 to 16 years old last year, and has repeatedly informed us that he should be getting his learners license today!!! Instead 365 days to go. I'm sure he sill insist on doing a count down over the next year. HAPPY BIRTHDAY xxx
Master Jay is a very disappointed that the NZ government increased the age to get your learners drivers license from 15 to 16 years old last year, and has repeatedly informed us that he should be getting his learners license today!!! Instead 365 days to go. I'm sure he sill insist on doing a count down over the next year. HAPPY BIRTHDAY xxx
Friday, May 25, 2012
Cross Country
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..."
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 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.
Friday, April 20, 2012
Monday, April 16, 2012
"The Life Thats Chosen Me"
Has anyone ever heard this song?
I just found it on Youtube www.youtube.com/watch?v=zxkcUhW6Kzw&feature=channel
The Life That's Chosen Me (written by Karen Taylor-Good and Lisa Aschmann)
These are the actual words from the song:
"We had such expectations, we would soon be giving birth
To the next Chopin, the next Einstein, the greatest child on earth
And we'd be the perfect family, soon we'd have the perfect kid
We'd never have a challenge or a problem, God forbid
Oh but Life had different plans, so I need for you to understand
Don't desert me, don't ignore
I need friends now more than I ever did before
Show compassion but please don't pity me
I'm a parent just like you, it's true
But I have special needs
I need you to notice that my life's different from yours
I need you not to judge me, don't condemn and don't keep score
I'd love an extra pair of hands, or just a hug or two
I need you to acknowledge that I carry more than you
Got the world here on my back, so I just thought I would ask
Don't desert me, don't ignore
I need friends now more than I ever did before
What you take for granted comes so hard for me
I'm a parent just like you, it's true
But I have special needs
I need answers, I need help, it's so much work
And a miracle or two sure wouldn't hurt
Don't desert me, don't ignore
I need friends now more than I ever did before
It's not the life that I'd have chosen, but it's the life that's chosen me
I'm a parent just like you, it's true
But I have special needs
I need you to listen, I need you to care
I need your understanding, I need you just to be there
I need your friendship, maybe a hug or two
Oh God I need a miracle.........
Its quite true and every special needs parent out there will agree with me...
I just found it on Youtube www.youtube.com/watch?v=zxkcUhW6Kzw&feature=channel
The Life That's Chosen Me (written by Karen Taylor-Good and Lisa Aschmann)
These are the actual words from the song:
"We had such expectations, we would soon be giving birth
To the next Chopin, the next Einstein, the greatest child on earth
And we'd be the perfect family, soon we'd have the perfect kid
We'd never have a challenge or a problem, God forbid
Oh but Life had different plans, so I need for you to understand
Don't desert me, don't ignore
I need friends now more than I ever did before
Show compassion but please don't pity me
I'm a parent just like you, it's true
But I have special needs
I need you to notice that my life's different from yours
I need you not to judge me, don't condemn and don't keep score
I'd love an extra pair of hands, or just a hug or two
I need you to acknowledge that I carry more than you
Got the world here on my back, so I just thought I would ask
Don't desert me, don't ignore
I need friends now more than I ever did before
What you take for granted comes so hard for me
I'm a parent just like you, it's true
But I have special needs
I need answers, I need help, it's so much work
And a miracle or two sure wouldn't hurt
Don't desert me, don't ignore
I need friends now more than I ever did before
It's not the life that I'd have chosen, but it's the life that's chosen me
I'm a parent just like you, it's true
But I have special needs
I need you to listen, I need you to care
I need your understanding, I need you just to be there
I need your friendship, maybe a hug or two
Oh God I need a miracle.........
Its quite true and every special needs parent out there will agree with me...
Monday, April 9, 2012
Watch out everyone Corbin will be on the loose....
Corbin has outgrown his current manual wheelchair and we have just found out that he is going to get a power chair - how cool is that. It will give him so much more independance especially at school. No more relying on others to push him around at morning tea and lunch time and he will be able to get to the toilet on time without assistance. Wow he might even be able to keep up with his friends at school. It will also give him heaps more independance when we are out and about, especially on surfaces where he really struggles to self propel - like grass at the park or even around our own house. He is so excited and so am I.
We have just been away for the Easter weekend, staying with friends in Te Anau. As always it tears at my heartstrings when the kids are out riding scooters and ripsticks and he is struggling along behind in his wheelchair trying to keep up. We did an Easter egg hunt around the section and everyone else is running around scooping up the Easter eggs and Corbin is left to be pushed around by his Mum because its too hard to self propel on the grass and he can't crawl because the ground is wet and he has had a bad cold. And then everyone decides to go on a short bush walk - I tried to suggest that Corbin and I will just wait for the others but Corbin got upset so I decide to check out the track and managed to push him around it but not without significant effort on my part and lagging considerably behind the other kids at best. All these things will be possible for Corbin to do independantly with a power chair. I can't wait.
We have just been away for the Easter weekend, staying with friends in Te Anau. As always it tears at my heartstrings when the kids are out riding scooters and ripsticks and he is struggling along behind in his wheelchair trying to keep up. We did an Easter egg hunt around the section and everyone else is running around scooping up the Easter eggs and Corbin is left to be pushed around by his Mum because its too hard to self propel on the grass and he can't crawl because the ground is wet and he has had a bad cold. And then everyone decides to go on a short bush walk - I tried to suggest that Corbin and I will just wait for the others but Corbin got upset so I decide to check out the track and managed to push him around it but not without significant effort on my part and lagging considerably behind the other kids at best. All these things will be possible for Corbin to do independantly with a power chair. I can't wait.
Wednesday, March 28, 2012
Post Botox Followup
We had the 6 week followup with the Orthopeadic Surgeon last week. There were 2 things to come out of the appointment:
1. Firstly he doesnt think that he put enough Botox in Corbins calf muscles so he thinks he might give them another dose - I however can see that after 6 weeks the Botox is already wearing off for Corbin, and
2. Fortnightly physio sessions post Botox are NOT considered acceptable to the Orthopeadic Surgeon - No kidding - I did try to say something to the physiotherapist but I'm just the stupid mother who knows nothing.
So all in all the orthodox medical profession (Orthopeadics and physios) think that Botox has been a success for Corbin because without his high tone kicking in he has been able to step with his feet "flat" and his stepping action is far improved over the past 6 weeks. But as I said I can see that the Botox is starting to wear off already and I therefore still remain sceptical and will continue to wait and see, because in my mind if there is no long term benefit from doing Botox why bother doing it? 6 weeks is nothing in the overall scope of a life time.
My biggest objection to Botox is the physio - more the fact that we as a family have to do it rather than an independant physio. It is just horrible battling with Corbin to do his stretches and physio - they hurt and weight bearing on his feet has been unbearable for him at times over the past 6 weeks.
I have spent the first 9 years of Master Jays life and the first 3 years of Corbins life making my boys do physio and stretching programs that hurt and caused many battles and cross words with them and heartache and stress for me. When I look back they simply couldn't understand what the hell their Mum was making them do all those horrible hurtful things for. So as you can guess I'm well and truly over hurting my kids for minimal, if any, gain!!!
This is why I love ABR - aside from the fact it actually works, ie there is a gain for our kids - it doesn't hurt!!! In the Cerebral Palsy world where there are no miracle cures, who could ask for more - something that works and doesn't hurt???
1. Firstly he doesnt think that he put enough Botox in Corbins calf muscles so he thinks he might give them another dose - I however can see that after 6 weeks the Botox is already wearing off for Corbin, and
2. Fortnightly physio sessions post Botox are NOT considered acceptable to the Orthopeadic Surgeon - No kidding - I did try to say something to the physiotherapist but I'm just the stupid mother who knows nothing.
So all in all the orthodox medical profession (Orthopeadics and physios) think that Botox has been a success for Corbin because without his high tone kicking in he has been able to step with his feet "flat" and his stepping action is far improved over the past 6 weeks. But as I said I can see that the Botox is starting to wear off already and I therefore still remain sceptical and will continue to wait and see, because in my mind if there is no long term benefit from doing Botox why bother doing it? 6 weeks is nothing in the overall scope of a life time.
My biggest objection to Botox is the physio - more the fact that we as a family have to do it rather than an independant physio. It is just horrible battling with Corbin to do his stretches and physio - they hurt and weight bearing on his feet has been unbearable for him at times over the past 6 weeks.
I have spent the first 9 years of Master Jays life and the first 3 years of Corbins life making my boys do physio and stretching programs that hurt and caused many battles and cross words with them and heartache and stress for me. When I look back they simply couldn't understand what the hell their Mum was making them do all those horrible hurtful things for. So as you can guess I'm well and truly over hurting my kids for minimal, if any, gain!!!
This is why I love ABR - aside from the fact it actually works, ie there is a gain for our kids - it doesn't hurt!!! In the Cerebral Palsy world where there are no miracle cures, who could ask for more - something that works and doesn't hurt???
Tuesday, March 20, 2012
One for the bucket list - albeit unusual!!!
Have you ever ridden a clydesdale horse? Well I have and his name is Clancy. That is one for the bucket list for sure.
We had a beautiful weekend away apart from the horseriding which was a bit of a disaster especially for the 3 ladies that have never been on a horse. It was a bit disorganised and we had no confidence in our 19 year old German guide who didn't even know where we were going because he had never been on the particular trail we were going on, and then took us the wrong way to start with - oops!!!
They put me on the massive big Clydesdale because I was the only one who had "experience" on a horse. Well this beast was huge. With my very short stature of 1.57 cm tall he towered over me which was quite intimidating really and he was so strong and old and very stubborn to boot. Thank God I didn't fall off because it was a damn long way to fall if I did!!!
Gave us all something to laugh about for the rest of the day anyway. It was a great weekend and I'm so blessed to know such a lovely group of gals.
We had a beautiful weekend away apart from the horseriding which was a bit of a disaster especially for the 3 ladies that have never been on a horse. It was a bit disorganised and we had no confidence in our 19 year old German guide who didn't even know where we were going because he had never been on the particular trail we were going on, and then took us the wrong way to start with - oops!!!
They put me on the massive big Clydesdale because I was the only one who had "experience" on a horse. Well this beast was huge. With my very short stature of 1.57 cm tall he towered over me which was quite intimidating really and he was so strong and old and very stubborn to boot. Thank God I didn't fall off because it was a damn long way to fall if I did!!!
Gave us all something to laugh about for the rest of the day anyway. It was a great weekend and I'm so blessed to know such a lovely group of gals.
Thursday, March 15, 2012
Time out
I'm away for a "girls" weekend to beautiful Queenstown this weekend.
I'm pretty sure 99% of all the dedicated ABR Mums will be in the same boat as me - this is the first time I have been away by myself, without children or a husband for almost 3 years... I think I'm long overdue some time out!
We have a relaxing weekend in store in a luxury house, complete with a spa on the balcony, which may well be required after the horseback riding that someone planned - Man I havent been on a horse for 15 years...
I'm pretty sure 99% of all the dedicated ABR Mums will be in the same boat as me - this is the first time I have been away by myself, without children or a husband for almost 3 years... I think I'm long overdue some time out!
We have a relaxing weekend in store in a luxury house, complete with a spa on the balcony, which may well be required after the horseback riding that someone planned - Man I havent been on a horse for 15 years...
Saturday, March 10, 2012
"I'm happy with my life the way it is..."
Corbin had a physio appointment this week in which we were given a couple of new "stretches" or exercises that are damn near impossible for Corbin to do and yes you guessed it they hurt!!! So Corbin being Corbin clearly showed his dislike with the whole process yet again and which prompted the physio to say to him..
"You have to do this to strengthen those muscles so you can walk - you want to be able to walk don't you?"
To this Corbin flatly answered "No!" in a very grumpy manner.
That night I lay down on the bed beside him and I asked Corbin if what he said to the physio earlier was true - was that how he truly felt? To which my precious little man burst into tears and replied...
"I'm happy with my life the way it is, I like crawling..."
Talk about break my heart...
On one hand I can't help but feel that because he doesn't know any difference and has no idea how much easier his life would be (and OK mine too) if he did walk, especially in the future when its not going to be so cool to crawl ie when you're a teenager - but then I guess I should be delighted that he accepts the way he is and he is happy...
"You have to do this to strengthen those muscles so you can walk - you want to be able to walk don't you?"
To this Corbin flatly answered "No!" in a very grumpy manner.
That night I lay down on the bed beside him and I asked Corbin if what he said to the physio earlier was true - was that how he truly felt? To which my precious little man burst into tears and replied...
"I'm happy with my life the way it is, I like crawling..."
Talk about break my heart...
On one hand I can't help but feel that because he doesn't know any difference and has no idea how much easier his life would be (and OK mine too) if he did walk, especially in the future when its not going to be so cool to crawl ie when you're a teenager - but then I guess I should be delighted that he accepts the way he is and he is happy...
Friday, March 2, 2012
Common Sense???
This is an email I got recently and thought it was rather good:
AN OBITUARY PRINTED IN THE LONDON TIMES - INTERESTING AND SADLY RATHER TRUE
Today we mourn the passing of a beloved old friend, Common Sense, who has been with us for many years. No one knows for sure how old he was, since his birth records were long ago lost in bureaucratic red tape. He will be remembered as having cultivated such valuable lessons as:
- knowing when to come in and out of the rain;
- why the early bird gets the worm;
- life isn't always fair;
- and Maybe it was my fault.
Common Sense lived by simple, sound financial policies (don't spend more than you earn) and reliable strategies (adults, not children, are in charge).
His health began to deteriorate rapidly when well-intentioned but overbearing regulations were set in place. Reports of a 6 year old boy charged with sexual harassment for kissing a classmate; teens suspended from school for using mouthwash after lunch; and a teacher fired for reprimanding an unruly student, only worsened his condition.
Common Sense lost ground when parents attacked teachers for doing the job that they themselves had failed to do in disciplining their unruly children.
It declined even further when schools were required to get parental consent to administer sun lotion or aspirin to a student; but could not inform parents when a student became pregnant and wanted to have an abortion.
Common Sense lost all will to live as the churches becames businesses; and criminals received better treatment than their victims.
Common Sense took a beating when you couldn't defend yourself from a burglar in your own home and the burglar could sue you for assault.
Common Sense finally gave up after a woman failed to realize that a steaming cup of coffee was hot. She spilled a little in her lap and was promptly awarded a huge settlement.
Common Sense was preceded in death by his parents Truth and Trust, by his wife Discretion, by his daughter Responsibility, and his son Reason.
He is survived by his 4 stepbrothers:
I Know My Rights
I Want it Now
Someone Else is to Blame, and
I'm a Victim
Not many attended his funeral because so few realized he was gone. If you still remember him, pass this on, if not, join the majority and do nothing ...........
AN OBITUARY PRINTED IN THE LONDON TIMES - INTERESTING AND SADLY RATHER TRUE
Today we mourn the passing of a beloved old friend, Common Sense, who has been with us for many years. No one knows for sure how old he was, since his birth records were long ago lost in bureaucratic red tape. He will be remembered as having cultivated such valuable lessons as:
- knowing when to come in and out of the rain;
- why the early bird gets the worm;
- life isn't always fair;
- and Maybe it was my fault.
Common Sense lived by simple, sound financial policies (don't spend more than you earn) and reliable strategies (adults, not children, are in charge).
His health began to deteriorate rapidly when well-intentioned but overbearing regulations were set in place. Reports of a 6 year old boy charged with sexual harassment for kissing a classmate; teens suspended from school for using mouthwash after lunch; and a teacher fired for reprimanding an unruly student, only worsened his condition.
Common Sense lost ground when parents attacked teachers for doing the job that they themselves had failed to do in disciplining their unruly children.
It declined even further when schools were required to get parental consent to administer sun lotion or aspirin to a student; but could not inform parents when a student became pregnant and wanted to have an abortion.
Common Sense lost all will to live as the churches becames businesses; and criminals received better treatment than their victims.
Common Sense took a beating when you couldn't defend yourself from a burglar in your own home and the burglar could sue you for assault.
Common Sense finally gave up after a woman failed to realize that a steaming cup of coffee was hot. She spilled a little in her lap and was promptly awarded a huge settlement.
Common Sense was preceded in death by his parents Truth and Trust, by his wife Discretion, by his daughter Responsibility, and his son Reason.
He is survived by his 4 stepbrothers:
I Know My Rights
I Want it Now
Someone Else is to Blame, and
I'm a Victim
Not many attended his funeral because so few realized he was gone. If you still remember him, pass this on, if not, join the majority and do nothing ...........
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???
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?
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).
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
Botox
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 ...
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 ...
Sunday, January 22, 2012
Curse the weather
Well it looks like our summer might be over. The weather has been absolute rubbish for a week and there is more of that in store for this week!!! Today we watched 2 DVD's, finished covering school books, named everything for school and played cards. The silver lining for rubbish weather is at least there are no excuses not to do ABR. So at least I got in a couple of hours while watching the Smurfs!!!
Saturday, January 7, 2012
A Day of Accomplishments
We've just got back from a few days away in Central Otago where we managed to get in a bit of boating. We had a day of accomplishments. Master Jay mastered the wakeboard, Miss Livee got up on the water skis, the wakeboard and managed to do a 360 degree turn on the kneeboard (first in our family to do this).
Well not to be outdone, Corbin decided he wanted to go by himself on the ski biscuit(he normally goes with an adult or laterly Miss Livee or Master Jay), which needless to say made me a little nervous, but both Corbin and I faced our fears and he did it!!!
As you can see he even got really cocky and got up on his hands and knees, not holding on, as well. The face first entry into the water when we stopped wasn't so pretty but he coped really well and didnt panic like he normally does. What a clever dude Corb.........
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