Happy Birthday Master Corb..........
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.
Sunday, September 29, 2013
Wednesday, September 25, 2013
7, 6, 5, 4.....................
Its down to the final days now till the big number 10 and quite frankly I'm sick of hearing about it!!!
I know I should count my blessings that Master Corb can talk but man he is so over opinionated with an answer or question for everything it drives me insane sometimes.
Anyway 4 days to go now so I've been told. And a busy 4 days at the end of term 3 they are. The Myross Bush School Production is tomorrow. Can't wait to see the fantastic performance the dance group is going to put on. Master Corb is of course one of the hip hop dance group performers(???) Not too sure how that's going to go but he has assured me he is good (???).
One of the teachers at the school said to me last week that one of the things he finds awesome about Master Corb is his attitude about himself and how he doesn't view himself as any different to anyone else. There was no doubt or reason in his mind that he couldn't be a hip hop dancer for the production, he wanted to try out to be a dancer so he did, he got put in and its as simple as that to him. Personally I secretly hope he doesn't look like an ass but that's my issue to deal with.
Watch this space - I will try and get some footage.
I know I should count my blessings that Master Corb can talk but man he is so over opinionated with an answer or question for everything it drives me insane sometimes.
Anyway 4 days to go now so I've been told. And a busy 4 days at the end of term 3 they are. The Myross Bush School Production is tomorrow. Can't wait to see the fantastic performance the dance group is going to put on. Master Corb is of course one of the hip hop dance group performers(???) Not too sure how that's going to go but he has assured me he is good (???).
One of the teachers at the school said to me last week that one of the things he finds awesome about Master Corb is his attitude about himself and how he doesn't view himself as any different to anyone else. There was no doubt or reason in his mind that he couldn't be a hip hop dancer for the production, he wanted to try out to be a dancer so he did, he got put in and its as simple as that to him. Personally I secretly hope he doesn't look like an ass but that's my issue to deal with.
Watch this space - I will try and get some footage.
Sunday, September 15, 2013
The Countdown is on...
Master Corb is counting down to the big double digit birthday, only 2 weeks to go......
Oooh time goes so quick. When I first started Advanced Biomechanical Rehabilitation and I saw with my own eyes how this wonderful approach could do what it claims, ie "rehabilitate", I was very optimistic and I firmly believed that Master Corb would walk independantly by the time he was 10 years old - well we are running out of time..... :(
Oooh time goes so quick. When I first started Advanced Biomechanical Rehabilitation and I saw with my own eyes how this wonderful approach could do what it claims, ie "rehabilitate", I was very optimistic and I firmly believed that Master Corb would walk independantly by the time he was 10 years old - well we are running out of time..... :(
Wednesday, September 4, 2013
Happy Birthday to my Dad
Master Corbs Birthday card to his dad reads:
Happy Birthday Dad aka Troll
Gess what I got you, a big box of nothing
love from Corb
What a loving son - NOT!!
Happy Birthday Dad aka Troll
Gess what I got you, a big box of nothing
love from Corb
What a loving son - NOT!!
Monday, September 2, 2013
How long do goldfish really live?
We had quite a few goldfish pets when we were growing up, with the popular 70's and 80's names of George and Mildred and of course Bo and Luke but if my memory serves me correct none of our goldfish lived for more than a couple of months.
This is Miss Livs goldfish Stella. We have had it for 2 years and 9 months so it is about 3 years old!!
Its a beautiful goldfish with a massive long floaty tail but I can not believe it has lived so long. There is no form of oxygen in the water and nor has there ever been, her bowl is quite boring with just red stones and a tunnel thing, sometimes the bowl is quite green, now and again we forget to feed her and sometimes she floats on the top on her side for a few days and I think it will be time to flush her away but she comes right and defies the odds and lives on... I think we all could learn a big lesson from Stella the Goldfish....
This is Miss Livs goldfish Stella. We have had it for 2 years and 9 months so it is about 3 years old!!
Its a beautiful goldfish with a massive long floaty tail but I can not believe it has lived so long. There is no form of oxygen in the water and nor has there ever been, her bowl is quite boring with just red stones and a tunnel thing, sometimes the bowl is quite green, now and again we forget to feed her and sometimes she floats on the top on her side for a few days and I think it will be time to flush her away but she comes right and defies the odds and lives on... I think we all could learn a big lesson from Stella the Goldfish....
Wednesday, August 21, 2013
Teenagers - Grr!!
I've decided I hate being a mother of a moody teenage girl!!! Time to get the most excellent parenting books out to remind myself that she is simply not normal at the moment and hopefully one day it will pass!!!
If you are struggling with your teenagers too you have got to read these books!!!
Revised & updated edition of Before Your Teenagers Drive You Crazy, Read This! - complete with new content including advice on using internet and wireless devices wisely.
Does your teenager sometimes leave you feeling so far out of your depth your head hurts? Has your teenage son lost the gift of speech? Does your teenage daughter blame you for everything, including global warming? Ever found yourself being frowned at, scowled at, or just plain screamed at for no good reason? Welcome to the teenage years - you are not alone. Nigel Latta has worked extensively with teenagers, and has seen every kind of kid, family, and problem you could possibly imagine - and many you probably couldn't. In this entertaining, informative, and practical book, he shares all the secrets of surviving the teenage years alive and with sanity intact. This book shows you what to do when you don't know what to do, using the same bombproof frameworks, basic principles and simple plans he would use if he saw your family.
If you are struggling with your teenagers too you have got to read these books!!!
Description
Revised & updated edition of Before Your Teenagers Drive You Crazy, Read This! - complete with new content including advice on using internet and wireless devices wisely.Does your teenager sometimes leave you feeling so far out of your depth your head hurts? Has your teenage son lost the gift of speech? Does your teenage daughter blame you for everything, including global warming? Ever found yourself being frowned at, scowled at, or just plain screamed at for no good reason? Welcome to the teenage years - you are not alone. Nigel Latta has worked extensively with teenagers, and has seen every kind of kid, family, and problem you could possibly imagine - and many you probably couldn't. In this entertaining, informative, and practical book, he shares all the secrets of surviving the teenage years alive and with sanity intact. This book shows you what to do when you don't know what to do, using the same bombproof frameworks, basic principles and simple plans he would use if he saw your family.
Description
Nigel Latta has drawn on his extensive experience in family therapy and working with the country's most difficult teenagers to write the book that will save the sanity of parents everywhere.
Once you've negotiated the terrors of toddlerdom and the perils of primary school you think you've got a pretty good handle on this parenting thing - then along comes Mother Nature with her horrible hormones and suddenly you're so far behind square one you're starting to wonder if this raging bundle of contradictions screaming at you was switched in the night by evil aliens.
With his now trademark humour and pragmatic common sense approach, Nigel debunks the politically correct nightmare of perfect parenting and argues for sanity first - yours - and reclaiming the ground parents have lost in the great 'I'm my child's best friend' debacle.
Once you've negotiated the terrors of toddlerdom and the perils of primary school you think you've got a pretty good handle on this parenting thing - then along comes Mother Nature with her horrible hormones and suddenly you're so far behind square one you're starting to wonder if this raging bundle of contradictions screaming at you was switched in the night by evil aliens.
With his now trademark humour and pragmatic common sense approach, Nigel debunks the politically correct nightmare of perfect parenting and argues for sanity first - yours - and reclaiming the ground parents have lost in the great 'I'm my child's best friend' debacle.
Tuesday, August 13, 2013
Thursday, August 8, 2013
Happy Birthday Miss Livee
Happy 13th Birthday beautiful girl - I love you all the way to the moon and back and so much more....xxx
I swear I'm not really old enough to have 2 teenagers!!!
I swear I'm not really old enough to have 2 teenagers!!!
Wednesday, August 7, 2013
Good bye little girl...
I gave my little girl an extra big goodnight kiss and cuddle tonight and told her it was because it was the last time I get to cuddle my little girl because she is going to be a big grown up teenager tomorrow - to this she promptly replied "OK mum - you give your little girl who is taller than you a cuddle.." Ohhhhh time goes so fast.
Saturday, July 27, 2013
A very boring progress Summary...
Well my ABR update hasn't followed sorry - I just don't know where the last 2 weeks have gone and not only that I'm afraid I'm not clued up enough to load a small portion of the ABR assessment DVD.
I will have to summarise briefly without any visual aides:
- The mobility (flexibility) of the upper half of Master Corbs vertebral column has improved significantly and in Mr Blyums words is looking "very, very good" and is "very different from the rigid boy we saw in the past"
- His general tissue quality has improved as evidenced by an increase in the "fatty tissue layer" particularly around his bottom and legs
- A major "detachment" of his vertebral column at the waist level (L6 - L7?) has become evident so we are full steam ahead working on this area with our new ABR tool the weighted ball, which I feel very comfortable with and Mr Blyum tells me I am natural at it - fantastic!!
- I have renewed motivation and am ready for the mind blowing improvements that are going to happen over the next few months thanks to the weighted ball.
Hows that for positive thinking?????
I will have to summarise briefly without any visual aides:
- The mobility (flexibility) of the upper half of Master Corbs vertebral column has improved significantly and in Mr Blyums words is looking "very, very good" and is "very different from the rigid boy we saw in the past"
- His general tissue quality has improved as evidenced by an increase in the "fatty tissue layer" particularly around his bottom and legs
- A major "detachment" of his vertebral column at the waist level (L6 - L7?) has become evident so we are full steam ahead working on this area with our new ABR tool the weighted ball, which I feel very comfortable with and Mr Blyum tells me I am natural at it - fantastic!!
- I have renewed motivation and am ready for the mind blowing improvements that are going to happen over the next few months thanks to the weighted ball.
Hows that for positive thinking?????
Sunday, July 14, 2013
Singapore Clinic July 2013
We have just arrived back home after a 9 hr flight from Singapore to Auckland on Wednesday night, a further 1 hr 15min flight from Auckland to Christchurch on Thursday afternoon, a couple of days in Christchurch with family and a 7 hour drive (with a couple of stops) back to Invers today. I've managed to unpack and get Master Corb off to bed with his new machine set up and now I'm sitting down for a wee drink. Our ABR update will follow over the next few days...........
Monday, June 24, 2013
Advanced Biomechanical Rehabilitation(ABR) Hours to date
Just a little diversion from my current blogging path as I'm preparing to go to Singapore next week for our next Advanced Biomechanical Rehabilitation (ABR) session.
I am currently completing our "home performance record" which documents how many hours we have spent on each "application" or "prescription exercise" and thought I would do an update on our blog to show how much time and effort I devote to delivering this amazing rehabilitation approach to Master Corb.
Just to recap - the "manual" hours refers to the actual hours that I (or Corbs Nana who has done a few hundred hours) have personally, physically delivered the technique on Master Corb. This has been performed on at least 50 different arrears of this body, primarily his head and torso, depending on the individual prescription exercises I have been given at our clinic or training session.
The "machine" hours refers to the hours that have been delivered by the ABR machine that we hire. The machine simulates the manual technique. Master Corb has slept with the machine on for over 6 years (one machine can be applied to 1-4 applications each time depending on the childs tolerance and Master Corb has had a minimum of 2 applications each night hence we clock up around 24 machine hours each night)
I want to reassure people (particularly the sceptics in the orthodox medical profession) that the reason I have put so much effort into ABR over the past 6.5+ years is because we have seen positive changes and results that would not have occurred otherwise and can not be explained by Master Corbs paedetrician or orthopaedic surgeon (or should I say they don't want to explain them and would prefer to ignore them because, heaven forbid, ABR might actually work!).
Contrary to popular belief I am not an idiot and I am not having the wool pulled over my eyes. I am an educated individual who is deeply passionate about my children but I am not stupid, I thoroughly look into and research everything when it comes to my children and I know there are no cures (miracle or otherwise for Cerebral Palsy) but at the end of the day I let the results speak for themselves, any improvement is better than the alternative which is none at all. I know a good thing when I see it and Advanced Biomechanical Rehabilitation is a revolutionary approach that does what it says -REHABILITATE.
Can't wait to get to Singapore and see Mr Blyum next week.
I am currently completing our "home performance record" which documents how many hours we have spent on each "application" or "prescription exercise" and thought I would do an update on our blog to show how much time and effort I devote to delivering this amazing rehabilitation approach to Master Corb.
Manual Hours to date - 2987 hours
Machine Hours to date - 58023 hours
Just to recap - the "manual" hours refers to the actual hours that I (or Corbs Nana who has done a few hundred hours) have personally, physically delivered the technique on Master Corb. This has been performed on at least 50 different arrears of this body, primarily his head and torso, depending on the individual prescription exercises I have been given at our clinic or training session.
The "machine" hours refers to the hours that have been delivered by the ABR machine that we hire. The machine simulates the manual technique. Master Corb has slept with the machine on for over 6 years (one machine can be applied to 1-4 applications each time depending on the childs tolerance and Master Corb has had a minimum of 2 applications each night hence we clock up around 24 machine hours each night)
I want to reassure people (particularly the sceptics in the orthodox medical profession) that the reason I have put so much effort into ABR over the past 6.5+ years is because we have seen positive changes and results that would not have occurred otherwise and can not be explained by Master Corbs paedetrician or orthopaedic surgeon (or should I say they don't want to explain them and would prefer to ignore them because, heaven forbid, ABR might actually work!).
Contrary to popular belief I am not an idiot and I am not having the wool pulled over my eyes. I am an educated individual who is deeply passionate about my children but I am not stupid, I thoroughly look into and research everything when it comes to my children and I know there are no cures (miracle or otherwise for Cerebral Palsy) but at the end of the day I let the results speak for themselves, any improvement is better than the alternative which is none at all. I know a good thing when I see it and Advanced Biomechanical Rehabilitation is a revolutionary approach that does what it says -REHABILITATE.
Can't wait to get to Singapore and see Mr Blyum next week.
Monday, June 17, 2013
Too Early Part 3...
5 June 1997 - My first "hold" of my baby
6 June 1997 - Day 4
Was told Jay has a heart murmur due to a valve in his heart not closing on birth (which is what normally happens in full term babies). Apparantly this is common in prem babies. They will start a drug to close it later today after the morphine is stopped (they have slowly weaned this down over the past 2 days).
His weight has dropped to 1.01 kgs.
I was very depressed today. Everytime a card or flowers arrived I just cried.
Grandad F and Uncle B visited Jay today - first time. I think they were both shocked. Who can blame them, Jay doesn't even look like a real baby.
Sunday, June 9, 2013
Too Early Part 2...
Here come the next few entries in my diary....
4 June 1997 - Day 2
Met paediatrician Dr Nicola. She explained that Jayden would have a brain scan and a chest x-ray today. She asked me a lot of questions about Jaydens birth and the days leading up to it because they are very concerned about the severe bruising on the top of his head. After discussing it with her they are pretty sure (and a little horrified to say the least) that it would have been caused by the internal exam the midwife who was with me for the delivery had done about 10 minutes before his birth. She had a really good feel around and freaked out because she thought he was coming breech (which would have been fatal) yelling at me not to push because she thought that the very soft head of a very premature baby was his bottom. So I gather she did not have any experience with very premature births and the result was significant trauma and bruising to his head - fantastic!
Got the result of the brain scan later in the day. Jayden has a small bleed in his brain classified 1 on a scale of 1-4. The will continue weekly scans to keep an eye on it. The chest x-ray is standard procedure to check the lungs and heart and check the placement of the ventilator tubing.
They started feeding Jayden 1/2 ml milk feeds every 2 hours but because of all the drugs they have given him and his immature digestive system he didn't take the milk very well so stopped it later in the day.
5 June 1997 - Day 3
Had another restless night. Went to see Jayden about 4am. I got to change his nappy for the first time.
Gary went home at lunchtime with his mother. Mum stayed with me.
They changed Jayden from his plastic "tent" to an enclosed incubator this afternoon. I got to have my first "hold" while they were changing him over (hold - not cuddle - a cuddle is impossible with all the attachments). I was scared that I would accidentally pull out one of the tubes or attachments. I wanted to hold him forever, I want to protect him but I can't - his feet got cold so he had to go into the incubator after about 5 minutes.
I got to have a good look at him once he was in the incubator. He has an IV in his arm for fluids (lipids and TPN - Total Parental Nutrition - this is what feeds him), he has a line in his navel for blood testing and transfusions. He has 3 probes stuck to his body that are hooked up to a rather large machine that beeps constantly and monitors his heart and respiratory rates. There is a probe wrapped around his little foot which measures the oxygen saturation in his blood. And there is the ventilator which is doing the breathing for him. They don't know how long he'll need the ventilator - its up to Jayden (really - is any of this up to Jayden?)
I got moved into the "self care" room especially for out of town mothers with babies in NICU tonight. Room mates Bridget (twins 28 weeks), Cate (baby 30 weeks) and Lorna (baby full term has had surgery).
Not impressed with my MIL today - found out today that she was miffed because we didn't name Jayden after her father because Gary was (middle name). I think there are more serious things going on here that what we have chosen to name our son!
Thanks for reading - there will be more next week.
4 June 1997 - Day 2
Met paediatrician Dr Nicola. She explained that Jayden would have a brain scan and a chest x-ray today. She asked me a lot of questions about Jaydens birth and the days leading up to it because they are very concerned about the severe bruising on the top of his head. After discussing it with her they are pretty sure (and a little horrified to say the least) that it would have been caused by the internal exam the midwife who was with me for the delivery had done about 10 minutes before his birth. She had a really good feel around and freaked out because she thought he was coming breech (which would have been fatal) yelling at me not to push because she thought that the very soft head of a very premature baby was his bottom. So I gather she did not have any experience with very premature births and the result was significant trauma and bruising to his head - fantastic!
Got the result of the brain scan later in the day. Jayden has a small bleed in his brain classified 1 on a scale of 1-4. The will continue weekly scans to keep an eye on it. The chest x-ray is standard procedure to check the lungs and heart and check the placement of the ventilator tubing.
They started feeding Jayden 1/2 ml milk feeds every 2 hours but because of all the drugs they have given him and his immature digestive system he didn't take the milk very well so stopped it later in the day.
5 June 1997 - Day 3
Had another restless night. Went to see Jayden about 4am. I got to change his nappy for the first time.
Gary went home at lunchtime with his mother. Mum stayed with me.
They changed Jayden from his plastic "tent" to an enclosed incubator this afternoon. I got to have my first "hold" while they were changing him over (hold - not cuddle - a cuddle is impossible with all the attachments). I was scared that I would accidentally pull out one of the tubes or attachments. I wanted to hold him forever, I want to protect him but I can't - his feet got cold so he had to go into the incubator after about 5 minutes.
I got to have a good look at him once he was in the incubator. He has an IV in his arm for fluids (lipids and TPN - Total Parental Nutrition - this is what feeds him), he has a line in his navel for blood testing and transfusions. He has 3 probes stuck to his body that are hooked up to a rather large machine that beeps constantly and monitors his heart and respiratory rates. There is a probe wrapped around his little foot which measures the oxygen saturation in his blood. And there is the ventilator which is doing the breathing for him. They don't know how long he'll need the ventilator - its up to Jayden (really - is any of this up to Jayden?)
I got moved into the "self care" room especially for out of town mothers with babies in NICU tonight. Room mates Bridget (twins 28 weeks), Cate (baby 30 weeks) and Lorna (baby full term has had surgery).
Not impressed with my MIL today - found out today that she was miffed because we didn't name Jayden after her father because Gary was (middle name). I think there are more serious things going on here that what we have chosen to name our son!
Thanks for reading - there will be more next week.
Monday, June 3, 2013
Too Early.........
Happy Birthday to my miracle baby Master Jay. Sweet 16 today.
From a tiny premature dot of 1080kgs (2lb 6oz) born at 26 weeks gestation, to a mighty handsome young man who I am extremely proud of. He is and always has been an awesome kid. He has been pretty well behaved most of his life, he is a very likeable young man, he has always tried his hardest at school and he has shown huge commitment and dedication in gaining a vast amount of "mechanical knowledge" from whatever means necessary over the past 12 - 18 months. I am very proud of him.
When Master Jay was born I kept a diary of the first 81 days of his life - this was the time he spent in hospital when he was born. He spent a lot more time in hospital over the first 2 years of his life and I wish I had kept a diary of all of this too for others to look back on and fully appreciate the miracle that is Master Jay...
Not many people have read this diary, only a few close friends and just recently I let Master Jay read it. Up until a few months ago he didn't really take much interest in the details of his birth. He knew that he had hemiplegia because of his premature birth but beyond that he hadn't really been interested. He was asking me a lot of questions one day and I suggested he read my diary - he was blown away....
Here are the first 2 entries................
2 June 1997
After 10 days in hospital I should have been discharged this morning but the doctor missed me on his rounds. The nurse tried to track him down but he had left early because it was Queens Birthday so I resigned myself to the fact that I would have to spend one more night in hospital...
The contractions started again at lunchtime. I told the nurse who gave me panadol.
Still going at 3pm. I started to worry that they would have to put me back on salbutamol to control the contractions and then I would never get home. The nurse said she would track down a doctor.
At 7pm the registrar finally came. I was given an internal examination. She told me I was in labour. Up until this point I never really even considered that the baby would be born early. I guess I was naively denying that it was a possibility.
When she told me I was in labour I burst in to tears. This wasn't meant to happen. None of the books on child birth tell you that this could happen. I was scared and didn't know what to think.
Then everyone started panicking, rushing around tracking down the specialist, the paedetrician, contacting Dunedin hospital (because Invercargill did not have the skill or facilities to cope with a baby born at 26 weeks) and trying to get hold of Gary.
Then I started to panic. If all the staff are panicking then something must be really wrong. The baby is going to die or he's going to be all deformed - I was beside myself with worry.
They decided not to risk transferring me to Dunedin in case the baby came on the way. I was moved into the delivery suite and prepared for the birth.
3 June 1997
Master Jay was born at 3.12am. I caught a glimpse of Jayden as he was whisked away to be resuscitated. It was all very sad and terrifying. I had just had a precious little baby but I couldn't have him. It should have been the happiest moment of our lives but I couldn't even look at Gary during or after the birth because of the guilt and fear I was feeling and I was scared at what I 'd see in his eyes.
Gary phoned the new grandparents and they arrived soon after. Everyone was just sitting around waiting in my room in the delivery suite and I couldn't bare it. I was exhausted and drained and I felt guilty and incompetent. I just wanted to be left alone to cry for myself and my little baby who was fighting for his life. It wasn't meant to be this way.
We finally got to see Master Jay 2 hours after he was born. He was in the Neo Natal unit in an overhead incubator. He had tubes and wires everywhere and he looked so tiny and helpless. The nurse explained what everything was for but I didn't take a word in. All I remember thinking was that this is, he is not real, and that there was no way something that small would live. I was shocked or maybe I was in shock.
The "rescue" team arrived from Dunedin hospital. It took them 2 more hours to stabilise and prepare Master Jay for the 3 hour trip to Dunedin. My baby left for Dunedin around 7.30am. I had to wait until 11am to be discharged from the Obstetric Unit. After going home to pack, Gary and I drove to Dunedin and arrived at about 3.30pm. We went straight to see Master Jay. He was again in an overhead incubator with a plastic cover over it to keep the humidity right. I could hardly see him for the condensation. He was heavily sedated with morphine to stop him from stressing and lights had been set up for jaundice. We were told that the next 24 hours were critical. The new born intensive care unit (NICU) was so hot and I felt so faint. I just couldn't bare the pain in my heart.
I was readmitted to Dunedin hospital post natal ward and a midwife showed me how to express milk that night. I got 1ml. Gary went to a motel and I got very little sleep again. I listened to the cries of the new born babies everywhere around me as I thought and cried for my own little new born fighting for his life 4 floors above me...
Happy Birthday Master Jay.
I still can't read this without shedding a tear as I remember this day all too well. I think I will post more of the entries from my diary over the next few weeks.
From a tiny premature dot of 1080kgs (2lb 6oz) born at 26 weeks gestation, to a mighty handsome young man who I am extremely proud of. He is and always has been an awesome kid. He has been pretty well behaved most of his life, he is a very likeable young man, he has always tried his hardest at school and he has shown huge commitment and dedication in gaining a vast amount of "mechanical knowledge" from whatever means necessary over the past 12 - 18 months. I am very proud of him.
When Master Jay was born I kept a diary of the first 81 days of his life - this was the time he spent in hospital when he was born. He spent a lot more time in hospital over the first 2 years of his life and I wish I had kept a diary of all of this too for others to look back on and fully appreciate the miracle that is Master Jay...
Not many people have read this diary, only a few close friends and just recently I let Master Jay read it. Up until a few months ago he didn't really take much interest in the details of his birth. He knew that he had hemiplegia because of his premature birth but beyond that he hadn't really been interested. He was asking me a lot of questions one day and I suggested he read my diary - he was blown away....
Here are the first 2 entries................
2 June 1997
After 10 days in hospital I should have been discharged this morning but the doctor missed me on his rounds. The nurse tried to track him down but he had left early because it was Queens Birthday so I resigned myself to the fact that I would have to spend one more night in hospital...
The contractions started again at lunchtime. I told the nurse who gave me panadol.
Still going at 3pm. I started to worry that they would have to put me back on salbutamol to control the contractions and then I would never get home. The nurse said she would track down a doctor.
At 7pm the registrar finally came. I was given an internal examination. She told me I was in labour. Up until this point I never really even considered that the baby would be born early. I guess I was naively denying that it was a possibility.
When she told me I was in labour I burst in to tears. This wasn't meant to happen. None of the books on child birth tell you that this could happen. I was scared and didn't know what to think.
Then everyone started panicking, rushing around tracking down the specialist, the paedetrician, contacting Dunedin hospital (because Invercargill did not have the skill or facilities to cope with a baby born at 26 weeks) and trying to get hold of Gary.
Then I started to panic. If all the staff are panicking then something must be really wrong. The baby is going to die or he's going to be all deformed - I was beside myself with worry.
They decided not to risk transferring me to Dunedin in case the baby came on the way. I was moved into the delivery suite and prepared for the birth.
3 June 1997
Master Jay was born at 3.12am. I caught a glimpse of Jayden as he was whisked away to be resuscitated. It was all very sad and terrifying. I had just had a precious little baby but I couldn't have him. It should have been the happiest moment of our lives but I couldn't even look at Gary during or after the birth because of the guilt and fear I was feeling and I was scared at what I 'd see in his eyes.
Gary phoned the new grandparents and they arrived soon after. Everyone was just sitting around waiting in my room in the delivery suite and I couldn't bare it. I was exhausted and drained and I felt guilty and incompetent. I just wanted to be left alone to cry for myself and my little baby who was fighting for his life. It wasn't meant to be this way.
We finally got to see Master Jay 2 hours after he was born. He was in the Neo Natal unit in an overhead incubator. He had tubes and wires everywhere and he looked so tiny and helpless. The nurse explained what everything was for but I didn't take a word in. All I remember thinking was that this is, he is not real, and that there was no way something that small would live. I was shocked or maybe I was in shock.
The "rescue" team arrived from Dunedin hospital. It took them 2 more hours to stabilise and prepare Master Jay for the 3 hour trip to Dunedin. My baby left for Dunedin around 7.30am. I had to wait until 11am to be discharged from the Obstetric Unit. After going home to pack, Gary and I drove to Dunedin and arrived at about 3.30pm. We went straight to see Master Jay. He was again in an overhead incubator with a plastic cover over it to keep the humidity right. I could hardly see him for the condensation. He was heavily sedated with morphine to stop him from stressing and lights had been set up for jaundice. We were told that the next 24 hours were critical. The new born intensive care unit (NICU) was so hot and I felt so faint. I just couldn't bare the pain in my heart.
I was readmitted to Dunedin hospital post natal ward and a midwife showed me how to express milk that night. I got 1ml. Gary went to a motel and I got very little sleep again. I listened to the cries of the new born babies everywhere around me as I thought and cried for my own little new born fighting for his life 4 floors above me...
Happy Birthday Master Jay.
I still can't read this without shedding a tear as I remember this day all too well. I think I will post more of the entries from my diary over the next few weeks.
Monday, May 27, 2013
A Big Birthday next week
Only one week to go and Master Jay will be 16. He is so excited, and a little nervous, to be able to sit his learners license next week. He was hoping to sit his learners license on the day of his 16th birthday but the poor boy has to wait one more day because he is sharing his big day with the Queen this year!!!
Monday, May 20, 2013
Speedway Prizegiving
The Riverside Speedway prize giving was last night. Master Jay collected a few more trophies to add to his collection:
1. First in Best Pairs
2. 2nd in Southland Champs
3. 1st in Season points
Next season Master Jay will move on to the adult Modified Sprints grade and Miss Livee will still have another 3 years in the Youth Grade. They both have the racing bug so can't see them wanting to finish up with this sport in a hurry!!!
Master Jay doesn't play a winter sport (too busy tinkering with cars and motors - well actually he tried a lot of the traditional winter sports over the years but found that running and coordination are not his best attributes!!).
Miss Livee plays hockey and netball in the Winter, both of which are now underway.
And of course Master Corb doesn't have any sports at this stage. Corb is not only disadvantaged because of his physical limitations but also because he suffers from "the 3rd child syndrome" - where his mother is a bit slack when it comes to getting him involved in sports and hobbies. I guess you could say my priorities for Master Corb lie elsewhere at the moment.
1. First in Best Pairs
2. 2nd in Southland Champs
3. 1st in Season points
Next season Master Jay will move on to the adult Modified Sprints grade and Miss Livee will still have another 3 years in the Youth Grade. They both have the racing bug so can't see them wanting to finish up with this sport in a hurry!!!
Master Jay doesn't play a winter sport (too busy tinkering with cars and motors - well actually he tried a lot of the traditional winter sports over the years but found that running and coordination are not his best attributes!!).
Miss Livee plays hockey and netball in the Winter, both of which are now underway.
And of course Master Corb doesn't have any sports at this stage. Corb is not only disadvantaged because of his physical limitations but also because he suffers from "the 3rd child syndrome" - where his mother is a bit slack when it comes to getting him involved in sports and hobbies. I guess you could say my priorities for Master Corb lie elsewhere at the moment.
Friday, May 17, 2013
Where is the Motor - arggh!!!
5 weeks and we are still waiting on a new motor for the power chair. Originally we were told 2-3 weeks to get one but today I've been informed that it still hasn't turned up - arggh - there is always something. Going back to the manual chair for 5 weeks is so hard and we are yet again faced with all the frustrations that come with the lack of independence Master Corb has. He is reliant on friends to push him around at school, he is not getting to the toilet on time, he has shoulder pain from self propelling, he has wet and dirty clothes everyday from the water off the wheels because there is no clearance from his sides because he has basically outgrown it and to top it off the damn foot plate keeps falling off the manual chair!! It really makes both Corb and I appreciate the power chair but on the other hand being without it really highlights the limitations of his manual chair.
Thursday, May 2, 2013
Spondylolysis
Master Jay has been living with extreme pain and discomfort which has gradually got worse over the past 9-10 months in his lower back and legs (not just the right which he has experienced pain in for most of his life being right side hemiplegic).
Rest and regular Osteopath appointments over this time have temporarily relieved the pain and discomfort. but 5 weeks ago at his Orthopedic review clinic I pushed the Orthopedic surgeon to get x-rays of his back - well today he had those x-rays and today he has a new diagnosis to add to the list - Spondyloysis. Here is a quick run down on it taken straight from the website http://www.physioadvisor.com.au/8369950/spondylolysis-pars-defect-lumbar-stress-fractu.htm
The spine comprises of many bones known as vertebrae. Each vertebra connects with the vertebra above and below via two types of joints: the facet joints on either side of the spine and the disc centrally. These joints are designed to support body weight and enable spinal movement.
Figure 1 - Anatomy of Spondylolysis
During certain movements of the spine, compressive force is placed on the facet joint. This force is then transmitted through a bony region known as the 'pars interarticularis' (figure 1). If these forces are excessive and beyond what the bone can withstand, bony damage will occur. This initially results in a bony stress reaction, however, with continued damage may progress to a bony stress fracture of the pars interarticularis. This condition is known as a spondylolysis.
We have worked so hard, particularly in his first 12 years to make Master Jay look as "normal" as possible, ie all the "therapies", conductive education, botox and surgeries, all to stop him from walking on his tip toes and stopping him from limping and dragging his foot. Yes all that effort I put in worked well to make him look normal to the extent that to the untrained eye you can't really see he has a physical disability. But heres the thing I'm struggling with today - what was the point making him look normal? Is this spondylolsis (which was obviously going to happen anyway regardless of all those "interventions") going to stop him from leading a normal life?
We(I) dangled a carrot to Master Jay and told him over and over if you do this you will walk better, you will be able to run, you will be able to do what other kids your age can do, the pain will go away etc, etc. Now its like a kick in the face for him. I'm sure he doesn't give a shit whether he looks normal when he sure as hell doesn't feel normal!!!!
Cerebral Palsy sucks...
Rest and regular Osteopath appointments over this time have temporarily relieved the pain and discomfort. but 5 weeks ago at his Orthopedic review clinic I pushed the Orthopedic surgeon to get x-rays of his back - well today he had those x-rays and today he has a new diagnosis to add to the list - Spondyloysis. Here is a quick run down on it taken straight from the website http://www.physioadvisor.com.au/8369950/spondylolysis-pars-defect-lumbar-stress-fractu.htm
What is a spondylolysis?
Spondylolysis is the name given to a stress fracture of the lumbar spine (lower back) and specifically affects a region of bone known as the pars interarticularisThe spine comprises of many bones known as vertebrae. Each vertebra connects with the vertebra above and below via two types of joints: the facet joints on either side of the spine and the disc centrally. These joints are designed to support body weight and enable spinal movement.
Figure 1 - Anatomy of Spondylolysis
During certain movements of the spine, compressive force is placed on the facet joint. This force is then transmitted through a bony region known as the 'pars interarticularis' (figure 1). If these forces are excessive and beyond what the bone can withstand, bony damage will occur. This initially results in a bony stress reaction, however, with continued damage may progress to a bony stress fracture of the pars interarticularis. This condition is known as a spondylolysis.
Contributing factors to the development of a spondylolysis
There are several factors that may contribute to the development of this condition. These need to be assessed and corrected with direction from a physiotherapist and may include:- poor sporting technique
- inappropriate or excessive training or activity
- inadequate recovery periods from training or activity
- joint stiffness (particularly the lumbar or thoracic spine or hips)
- muscle weakness (particularly the core stabilisers and gluteals)
- muscle tightness (particularly the hip flexors, gluteals or hamstrings)
- poor posture
- poor foot biomechanics
- age (particularly adolescence)
- anatomical anomalies
- inappropriate sporting surfaces
We have worked so hard, particularly in his first 12 years to make Master Jay look as "normal" as possible, ie all the "therapies", conductive education, botox and surgeries, all to stop him from walking on his tip toes and stopping him from limping and dragging his foot. Yes all that effort I put in worked well to make him look normal to the extent that to the untrained eye you can't really see he has a physical disability. But heres the thing I'm struggling with today - what was the point making him look normal? Is this spondylolsis (which was obviously going to happen anyway regardless of all those "interventions") going to stop him from leading a normal life?
We(I) dangled a carrot to Master Jay and told him over and over if you do this you will walk better, you will be able to run, you will be able to do what other kids your age can do, the pain will go away etc, etc. Now its like a kick in the face for him. I'm sure he doesn't give a shit whether he looks normal when he sure as hell doesn't feel normal!!!!
Cerebral Palsy sucks...
Monday, April 29, 2013
A New Job brings a New Frustration
I started a new, temporary job 3 weeks ago as a Teacher Aide. It was supposed to only be for a couple of weeks until the end of the school term to "babysit" a young girl who has behavioural problems (nothing medical - just purely bad behaviour) Unfortunately I have to go back next term!!!
What is wrong with our country/education system in New Zealand that naughty kids get to have full time teacher aides (primarily to protect the other kids at the school) so they can stay in school (even though they clearly don't want to) and yet it is such a struggle to get any help for children like Master Corb that have purely physical issues that prevent them from being fully involved in the education system.
Just before Corb started school he was assessed for what assistance he required at school and the little equation that Group Special Ed work out came up with the result that he was entitled to a Teacher Aide to assist with his mobility, toileting at morning tea time, lunch time, fitness/PE time and for 2 x 10 minute toilet stops. The result was 1.5 hours per day allocated. The major problem with this was the toileting - if the Teacher Aide was only going to be there for 1.5 hours (and there were no other Teacher Aides at the school at the time because it is a smallish country school) what if Corb had to go to the toilet when she wasn't there??? Who would get him there on time and help him with his clothing???
I was absolutely appalled when it was suggested that I put him (who had been toileting himself with my assistance getting to the toilet on time and with his clothes) back in nappies as a solution to this problem. Obviously I didn't go with this suggestion, instead I opted for a part time education initially (which ended up being for 4 years) and even then there were accidents a couple of times a week for the first year of school...........
IT IS SOOOOO WRONG THAT IF HE WAS A LITTLE BRAT WITH A FOUL TEMPER AND MOUTH HE COULD HAVE HAD A FULL TIME TEACHER AIDE TO HELP OUT WHENEVER NEEDED - ONE OF THE MANY THINGS THAT REALLY, REALLY FRUSTRATE ME WHEN IT COMES TO LIVING WITH DISABILITY. AAARGGHH!!!!!!!
What is wrong with our country/education system in New Zealand that naughty kids get to have full time teacher aides (primarily to protect the other kids at the school) so they can stay in school (even though they clearly don't want to) and yet it is such a struggle to get any help for children like Master Corb that have purely physical issues that prevent them from being fully involved in the education system.
Just before Corb started school he was assessed for what assistance he required at school and the little equation that Group Special Ed work out came up with the result that he was entitled to a Teacher Aide to assist with his mobility, toileting at morning tea time, lunch time, fitness/PE time and for 2 x 10 minute toilet stops. The result was 1.5 hours per day allocated. The major problem with this was the toileting - if the Teacher Aide was only going to be there for 1.5 hours (and there were no other Teacher Aides at the school at the time because it is a smallish country school) what if Corb had to go to the toilet when she wasn't there??? Who would get him there on time and help him with his clothing???
I was absolutely appalled when it was suggested that I put him (who had been toileting himself with my assistance getting to the toilet on time and with his clothes) back in nappies as a solution to this problem. Obviously I didn't go with this suggestion, instead I opted for a part time education initially (which ended up being for 4 years) and even then there were accidents a couple of times a week for the first year of school...........
IT IS SOOOOO WRONG THAT IF HE WAS A LITTLE BRAT WITH A FOUL TEMPER AND MOUTH HE COULD HAVE HAD A FULL TIME TEACHER AIDE TO HELP OUT WHENEVER NEEDED - ONE OF THE MANY THINGS THAT REALLY, REALLY FRUSTRATE ME WHEN IT COMES TO LIVING WITH DISABILITY. AAARGGHH!!!!!!!
Friday, April 19, 2013
School Holidays by Master Corb
I cant believe its already school holidays, the term went so fast. We went to the library this morning and I got ten books out. I hope to get some friends over and play mine craft together on our iPods. Tonight we are going to waxys because my sister got a good report but my brother does not get to go because he got told off at school.
Monday, April 15, 2013
It's finally done
After 4 weeks without it, We finally got the van back last Friday. Yay it's fantastic to have it back and the hoist looks super but you wouldn't believe it - now we are without the power chair for 3-4 weeks cos the auto brake lock came on and Master Corb accidentally crashed into the pole at the bottom of the ramp and broke the motor so we have to get a new one!!
Friday, April 5, 2013
Wednesday, March 27, 2013
Heart Attacks
Master Corbs Great Grandma had a minor heart attack a couple of days ago and is currently recouperating in the hospital. After Master Corbs weekly hydrotherapy session today we called to see her but didnt stay because she was having a sleep when we called.
On the way home Master Corb and I were having a discussion on heart attacks. Here is part of our conversation....
Corb: "Do they just happen or can you have one when someone gives you a fright?"
Me: " No Corb you can't have one from getting a fright, people have them when their heart isnt working right"
Corb: "So why do people say don't do that or you'll give me a heart attack"
Me: "Its just a saying"
Corb: "Well thats stupid then".......
Yes I suppose it is!!!!!
On the way home Master Corb and I were having a discussion on heart attacks. Here is part of our conversation....
Corb: "Do they just happen or can you have one when someone gives you a fright?"
Me: " No Corb you can't have one from getting a fright, people have them when their heart isnt working right"
Corb: "So why do people say don't do that or you'll give me a heart attack"
Me: "Its just a saying"
Corb: "Well thats stupid then".......
Yes I suppose it is!!!!!
Monday, March 25, 2013
24kms in 4 days
24kms is how far I walked last week Monday - Thursday (we didnt have to walk on Friday morning). This would be the most I have walked in 4 days since I was much much younger!
I don't have a vehicle in the mornings because my van is up in Dunedin getting a hoist fitted - yeah. But it means I am without a vehicle in the mornings for 2-3 weeks. This means in the morning I walk just over 1km with Master Corb in the buggy to take him to catch the school bus. We then go to school on the bus, then after I have him in school I walk 5kms home. The silver lining is that I should technically be fitter, healthier and have a smaller butt!!! And thank God the weather has been kind.
So here goes for another week of over exertion!!!
I don't have a vehicle in the mornings because my van is up in Dunedin getting a hoist fitted - yeah. But it means I am without a vehicle in the mornings for 2-3 weeks. This means in the morning I walk just over 1km with Master Corb in the buggy to take him to catch the school bus. We then go to school on the bus, then after I have him in school I walk 5kms home. The silver lining is that I should technically be fitter, healthier and have a smaller butt!!! And thank God the weather has been kind.
So here goes for another week of over exertion!!!
Friday, March 22, 2013
Orthopaedic Followup Time
Today we went to yet another Orthopaedic followup clinic. This time the Orthopaedic Surgeon has decided that he would like to lengthen Master Corbs hamstrings. And once again the very arrogant and obnoxious Orthopaedic surgeon was very unimpressed with me when I told him that because there is far more involved than just the shortness of his hamstrings, I did not believe that lengthening his hamstrings would help Corbin to walk independantly and therefore I will not consider hamstring lengthening at this stage. I was promptly informed not to "indoctrinate" myself!!! OMG what next??? A-hole!!!
Saturday, March 16, 2013
Youth Saloons
Master Jay and Miss Livee both race Youth Saloons at the Riverside Speedway in Invercargill. There are 15 kids between the age of 12-16 years that race in this grade in Invercargill (Miss Livee is the youngest this season) and their cars have to be 1600cc or less.
We travelled to Dunedin yesterday for the Otago Youth Saloons champs. Master Jay got 2nd overall which is awesome and the best he could have done because the boy who won it has a faster car and there is only so much that skill can do.
Miss Livee got a trophy for "Driver of the Night" - I think it was for the safest driver, keeping her driving lines etc.
With a lot of help from Uncle Barry, Master Jay got into Youth Saloons 2 years ago at the age of 13. It doesnt sound like a sport you would want your children to be participating in but it is just the perfect sport for a teenage boy that has hemiplegia.
Jay has gathered quite a collection of trophies over the 2 and 1/2 seasons he has been racing and it has been a huge morale booster for a young man that has struggled to keep up in any sport all his life.
Aside from that, the other huge advantages are that he is now pretty much a self taught mechanic (mostly via google and some from soaking up any info he can from actual mechanics) to the extent that with the help of another 15 year old friend they have replaced 3 vehicle motors in 2 different cars by themselves. Which is so impressive at the age of 15. He does all the repairs and maintenance on the 2 race cars with very little assistance from anyone which also makes it a reasonably inexpensive sport for us - bonus. And another huge bonus is I wont have to go grey(er) teaching my kids how to drive a car because they already know!!
We travelled to Dunedin yesterday for the Otago Youth Saloons champs. Master Jay got 2nd overall which is awesome and the best he could have done because the boy who won it has a faster car and there is only so much that skill can do.
Miss Livee got a trophy for "Driver of the Night" - I think it was for the safest driver, keeping her driving lines etc.
With a lot of help from Uncle Barry, Master Jay got into Youth Saloons 2 years ago at the age of 13. It doesnt sound like a sport you would want your children to be participating in but it is just the perfect sport for a teenage boy that has hemiplegia.
Jay has gathered quite a collection of trophies over the 2 and 1/2 seasons he has been racing and it has been a huge morale booster for a young man that has struggled to keep up in any sport all his life.
Aside from that, the other huge advantages are that he is now pretty much a self taught mechanic (mostly via google and some from soaking up any info he can from actual mechanics) to the extent that with the help of another 15 year old friend they have replaced 3 vehicle motors in 2 different cars by themselves. Which is so impressive at the age of 15. He does all the repairs and maintenance on the 2 race cars with very little assistance from anyone which also makes it a reasonably inexpensive sport for us - bonus. And another huge bonus is I wont have to go grey(er) teaching my kids how to drive a car because they already know!!
I am so proud of my boy and his mechanical abilities.
If is so easy to keep this teenager occupied and busy - just give him a car to tinker with and hes happy!!!
Saturday, March 9, 2013
Deep Cove - Fiordland
Last week I had the priviledge of going to Deep Cove with Miss Livees class. It has been a couple of years since I have been there (well more than a couple - the only time I have been was when I was 12 myself!!) and I guess as a 12 year old you don't really appreciate the beauty that is essentially at our back door.
We had fantastic weather which isn't the best to showcase the amazing waterfalls but it was just brilliant tramping/walking conditions.
I just have to share a couple of photos:
This was a absolutely beautiful, otherworld like, waterhole that most of us got in. You cant see it in the photo but there is a waterfall behind the big rock going into the waterhole. Miss Livee is the head in the water way over the back by the rock - she was the biggest water baby there!!! And yes the water was freezing - I only lasted about 2 minutes!!!
We had fantastic weather which isn't the best to showcase the amazing waterfalls but it was just brilliant tramping/walking conditions.
I just have to share a couple of photos:
The view at the top of the Wilmot Pass looking down into Deep Cove.
This was a absolutely beautiful, otherworld like, waterhole that most of us got in. You cant see it in the photo but there is a waterfall behind the big rock going into the waterhole. Miss Livee is the head in the water way over the back by the rock - she was the biggest water baby there!!! And yes the water was freezing - I only lasted about 2 minutes!!!
Another water hole at the bottom of Stella Falls that most of the kids got in.... there was a common theme - lets get wet..........
What a fantastic place.
Monday, March 4, 2013
Athletics Day
Wow its been a while since I have written a post - where does time go?
Last week Corbins school was involved in the Southern Zone Athletics day. Corbin obviously wasnt that involved - well not in a physical way anyway, but he was the self appointed athletics photographer. By lunch time that had lost its novelty so he decided he would rather hang out with his friends!!!
Last week Corbins school was involved in the Southern Zone Athletics day. Corbin obviously wasnt that involved - well not in a physical way anyway, but he was the self appointed athletics photographer. By lunch time that had lost its novelty so he decided he would rather hang out with his friends!!!
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