FOR THE LOVE OF CORBIN

Botox

2012-02-01T01:33:00.000-08:00

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 ...

Curse the weather

2012-01-22T01:27:00.000-08:00

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!!!

A Day of Accomplishments

2012-01-07T02:36:00.000-08:00

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.........

Merry Christmas

2011-12-26T01:23:00.000-08:00

Well thats another Christmas gone.
Corbin (with a little help from us all) is busy making up 4 large Starwars Lego sets that he got from the big fat man, mum, dad and the grandparents. He loves his lego but we just about need to add another room to our house to house it all now!
Another present that has proven to be a hit this year is his "swing bike" which is propelled forward with your arm power (rather than your legs) by turning the steering wheel from side to side. I wasn't sure how this was going to go but it turns out its perfect for a young fella with diplegia. Its nice to finally have something Corbin can use when other kids and friends are playing outside on the bikes, scooters and rollerblades.
Belated Merry Christmas everyone.....

My Bright kids

2011-12-19T01:37:00.000-08:00

I have 3 very talented and bright children, annd I'm just the proudest Mum in the world right now.

Master Corb had another good year at school. He is still well ahead of his peers in reading, spelling and maths. He apparantly reads at the level expected of a 10.5 year old (He turned 8 in September). So he is a clever little cookie.

Master Jay got a prize at prize giving for achievement in Science and a glowing school report for his academic achievement with wonderful comments from all his teachers. Although he doesn't particularly like school at least he trys hard and is a well behaved and likeable student.

And Miss Livee - 2011 was her last year at primary school. Next year she is off to Junior High. I am so proud of her achievements this year. She has done so well academically, in hockey, netball and golf and in her personal development (ie her confidence). She too has a glowing school report and she got the cup/trophy for Year 6 Girl "All Round" Excellence.

Wow - My kids may lack physical ability but they make up for it in brains and personality!!!

"CAN YOU IMAGINE" by Miss Livee

2011-12-10T01:56:00.000-08:00

This is a poem Miss Livee wrote at school a month ago and I've been meaning to post it.

CAN YOU IMAGINE

"Can you imagine a perfect world where the sun would always shine,
A world where the trees would talk and guide you,
A world where the birds were like angels,
A world where miracles actually exist,
A world where you do count,
A world where peace came to stay,
A world where you don't have to be afraid to be yourself,
A world where no criminal roams,
A world where you can still talk to your lost ones,
A world where people don't judge you on your looks,
A world where personality is the key,
A world where anything is possible,
A world where dreams are reality,
A world where you can have any super power like invincibility or time travel,
A world where I can't is I can,
A world where crying is laughing,
A world where your future is in your hands!"

Quite thoughtful and deep and meaningful for an 11 year old girl isn't it?

She doesn't really like speaking in front of her class (or anyone other than her family and closest friends) - but she asked to share this with her class. When she did she cried at the end. She told me she didn't think she would cry, but obviously the emotion and feeling that inspired her to write the words overwhelmed her.........
She said that this poem was inspired by Corbin .............

Happy Birthday Corbin

2011-09-29T00:49:00.000-07:00

Corbin is 8 years old today. Happy Birthday my darling little guy!!! I can't believe it was 8 years ago you decided to arrive so early.

Lego was the main theme of his presents this year but wouldnt you know it his favourite present was a little "All Black" penguin holding a little rugby ball that his dad got free as some promotion through a building supplier. If I had of know that I wouldnt have bothered with the expense of the lego!

Corbin, who is currently rugby mad, given the Rugby World Cup is currently being played in New Zealand, was also totally stoked with the All Blacks rug that his teacher aide (lovely, lovely, kindhearted Mrs MacPherson)gave him. Albeit he asked her to get it for him!!! He is definately not backward about coming forward.

Tonight we had a birthday tea with his grandparents. He is having a few friends over for a wee party on Sunday so I will post photos then.

90 years old today!!!

2011-08-31T19:32:00.000-07:00

Happy Birthday to my grandmother, and Corbins great grandmother, who is 90 years old today.

She had a birthday party on Saturday. Her 6 children were there, 12 of her 15 grandchildren were there, and 14 of her 16 great grandchildren were there.

She is a loving, caring and very kind hearted lady who would give you the shirt off her back and she knows how to "live" a life too. I hope that one day I too can say I have lived a great life and that I have the loving family (with the odd nut here and there of course) and amazing friends and extended family that my Nannie has.

Happy Birthday Nannie Reta. You are amazing for your 90 years and we all love you very much.
xxxooxxx

How Do you know if your CP Child has damaged a tendon?

2011-07-27T22:38:00.000-07:00

For months now I have been wondering about Master Corbins right ankle. Over the past 18 months it has got increasingly "deformed" if you like and his ability to put weight on it without pain has all but vanished. Initially I thought the inward placement of his right foot was due to the changes in his pelvis as a result of ABR, but then the pain factor started becoming more regular and now I'm wondering whether something more is going on.

That leads to my question, how do you know if your CP child has done some damage to tendons or muscles?

What if the pain Corbin says he has is due to a torn tendon or ligament? Maybe it is it due to lack of use of the muscles, tendons etc. Or is it the "wrong place - wrong movement" scenario that we hear from our ABR legend Leonid Blyum. ie, The stress created on everything by using that limb (and foot) the wrong way when he does put weight on it.

I think I need to probe this thought a little further. What if there is some damage and I have been putting it down to Cerebral Palsy??? What if ..... 2 little words that cause us so much stress.

That leads me to another thought - I guess I'm at an advantage to some parents of CP children. Corbin at least can communicate his pain. What of the CP child that can't communicate and is in severe pain when they are forced by their parents and therapists who follow traditional therapies to weight bare on legs that are no where near capable of comfortably supporting the child. Does your non verbal CP child cry and complain when forced to stand in a standing frame for hours each day? Its probably because its extremely uncomfortable and is doing the child no good what so ever....

Food for thought

School Holidays Again

2011-07-18T21:16:00.000-07:00

I've been rather slack with blogging over the past 7 months - its time to pull finger so to speak. So no time like the present as I take 5 minutes break from school holidays in our house.

I have 6 children today. 2 of my own, Master Corbin and Miss Livee, my nieces Ella and Abby from Christchurch, who are taking a break from the earthquakes, and our dear friend Alex, also taking a break from the earthquakes, but perhaps more importantly giving her mums ears a rest, plus we have Flynn as well. 4 are 10 year olds, 1 seven year old, and a six year old.

I must say they have been really good at entertaining themselves despite the weather(with a great deal of thanks to technology, ie playstations and ipods) so all good really - unfortunately however it is yet another excuse to have a break from ABR. Never mind tomorrow is another day.

Mothers Day

2011-05-08T20:38:00.000-07:00

Well today is Mothers Day in NZ. A day when we show thanks and appreciation to our mothers.

Corbin allowed me to sleep in until 7.30 am this morning before he called out for help with the loo. When I went to him to take his ABR machine off he told me I was the best mum in the universe. I love how children are so biased!!!

I was fortunate enough to get 50+ kisses and heaps of cuddles from Corbin and Miss Livee as they snuggled in bed with me this morning. They were both delighted when they gave me my gifts which consisted of homemade cards and a fridge magnet each that Miss Livee had made and they had painted themselves. They were so cute.

Olivia had gone shopping with her Dad yesterday to buy me a little something that she just knew I wanted - a New Rubber Scraper - how wonderful and thoughtful my beautiful daughter is! Unfortunately she couldnt keep it secret and she just had to tell me yesterday what they had got, and what it cost. Bless her.

My delightful teenage son informed me he didnt have time to make me a "Car wash" voucher (what he gave me last year) so he offered me breakfast in bed instead. This proved to be a bit of a problem because I asked for tomato on toast and Master Jay told me he didnt know how to make tomato on toast!!! Then when I explained the simplicity of it all to him he couldnt find the tomatoes in the fridge - they were hiding from him - much like everything that a teenage boy looks for hides from sight. The disaster was averted when his sister found them for him. Whew!!!!

I love mothers day purely for the hilarity of it.
I have 3 of the most gorgeous and comical children in the world and I love them to bits...........

Shame Mum!

2011-04-06T16:38:00.000-07:00

I watched Miss Livee and Corbin set up a blog for Corbin earlier this week. All the children at their school have been setting up a "Learning Blog". Miss Livee had already done hers so she helped Corbin do his.

They put me to shame when it comes to their blogging and computer knowledge. I'll have to get them to tweak this blog for me.

Anyway if you are interested I'm adding Corbins blog as a link to this one. No doubt he will have some very "interesting" and very "matter of fact" posts in the future for your joy and amusement.

If only the world was covered in water!!!

2011-03-24T00:06:00.000-07:00

I guess the residents of Japan aren't agreeing with the title of this blog but when you have a child that can only walk in water then you would understand where I'm coming from!!!

We have had school swimming for the past couple of weeks and Corbin has achieved some exciting things. Firstly walking confidently, unaided, in the water. His record is walking 5 times across the pool and back without falling and today he did it without his wetsuit on (his wetsuit gives him a little bit of bouyancy).

He can now also glide (of a fashion) on his tummy with his head in the water and then stand up and regain his footing without assistance. This is huge for Corbin. I attribute all this to the improvements in his balance thanks to ABR.

Yeah - Bring it on....................................................

I had a little video of him walking in the water but unfortunately after trying 3x to upload it I had to admit defeat and forget about it - sorry.

School Athletics

2011-03-09T18:17:00.000-08:00

Ah hello again.
I've been having a short break from blogging - not intentionally - time just seems to fly when you blink and wouldn't you know 7 weeks have shot by... it also has something to do with the fact that I've been running short of things to write about.

Anyway today I have something to say. Yesterday the 2 younger children, Miss Livee and Master Corbin, had the Southern Zone Athletics day. Quite uneventful for the Fraser children I must say. Olivia did well at high jump and shotput but the running was like watching "Chariots of Fire" in slow motion.

Corbin was able to participate in Shot put and Quoits and wanted to crawl the 60m running race and crawl through the long jump pit but I told him he would wear his knees off if he did so thankfully that put him off. Instead Corbin made up his own events at for the day.

Firstly there was the backward roll competition....

Then there was the up hill race (which I might add he did quite a few times)...

Then there was his favourite the downhill roll..

He certainly managed to fill in his day and he managed to tire himself out.

A week of accomplishments

2011-01-13T22:19:00.000-08:00

We have just returned from a few days of holidaying and boating in Central Otago, NZ and we have 3 exhausted, but proud, children.

Master Jay mastered waterskiing - he can now ski without the ropes on the trainer skis, and he can go backwards on the kneeboard (He was attempting to do a 360 degree turn on the kneeboard but couldnt quite get there, 180 was as far as he could go this time round).

The fearless Miss Livee had her first go on the kneeboard and totally mastered it by the second go.

And young Corbin had his first turn on the ski biscuit all by himself (when his Dad slid off the back of it without Corbins knowledge). I was driving the boat and circled back to pick up his Dad but when I slowed down Corbins biscuit nose dived into the water and Corbin rolled head first into the water. There was a moment of sheer panic as I contemplated diving to his rescue only to remember the boat was still going and I was the only one in the boat who knew how to drive it. But thankfully, with some super quick thinking our teenage friend, Courtney, jumped from the second biscuit that was being towed and in a matter of seconds was with Corbin as he uprighted himself with a big smile on his face, laughing and yelling "I'm alright, I'm alright"

Needless to say Corbins dad got growled out because of the heart failure I suffered!!!

Merry Christmas and Happy Birthday

2010-12-28T01:48:00.000-08:00

I'm a little late with the Christmas wishes, so Happy Belated Christmas to you all. Hope you all had a wonderful Christmas full of family and friends.

Corbin was delighted that Santa got him what he asked for - lollies and lego, but I'm still waiting on Santa to deliver legs that function properly for my dear little boy.

I ask for them at every opportunity I get and even though I know in my head that the arrival of functioning legs is a work in progress through ABR, there is always that little part of me that longs and prays for "total healing of every joint, every muscle, every part of his little body" - yes a miracle ....

Today is my birthday and once again, as I blow out the many, many candles Miss Livee has put on the beautiful carrot cake (my favourite) she has made me, I will make the very same wish....

Photos from Singapore

2010-12-12T19:56:00.000-08:00

I am having trouble viewing the assessment DVD from Singapore to refresh my mind and to give a progress report and photos of Corbins improvements so I thought I would divert for a week (or maybe two as we draw near to Christmas and all the hype and busyness that comes with it) and post some photos from our trip to Singapore (the holiday part anyway!!!)
The first is my water baby having a ball in the hotel swimming pool. He was seeing how long he could hold his breath underwater. He got to 16 seconds which I thought was quite impressive.

And of course Universal Studios Singapore - a real hit for Corbin and Mum alike. My favourite part was the "Revenge of the Mummy" ride and of course posing with the hot "egyptian" !!!

A much needed boost of motivation...

2010-12-02T23:13:00.000-08:00

It has been a very long couple of days. Corbins assessment on Wednesday, which I must say he was a star, and then the workshop and training today, followed by another couple of hours filming. We finally got back to the hotel at 9.30pm and Corbin was shattered.

I'm so grateful to have been given the opportunity to come to Singapore and have the "brilliant" Leonid give Corbin a very significant and extensive assessment for the purposes of training and information. Over the past 2 days I have been given so much education, insight into Corbins "condition" and instruction my brain is overflowing with information and my motivation levels have sky rocketed again.

We have another day in Singapore tomorrow then head home on Saturday. When I get home and get organised I will post details of the assessment and Corbins progress.

Universal Studios Singapore, by Corbin

2010-11-29T16:14:00.000-08:00

I had lots of fun . It was awesome , fantasik , amasing , cool and exilnt I went on many rides. I went on this ride when you go in this circle thing you sit in it and you get spun around. My favourite ride was the Treasure Hunters. You go in a safari car and drive around and you see mechanical animals. My favourite animal was the snakes.
I went on the Far far away rollacoaster and I went on this other thing like a rollacoaster at Jurasic park. We went on the Dino soarin ride and rode pterdactyls. I flew it. I went on the Madagascar merry go round and a Shrek ferris wheel. We saw Julian, Gloria, alex and the penguins of madagascar dancing and singing I like to move it move it. I got a photo with the penguins of madagascar. Mum bought me a drink bottle and a lego game and Mum went on this rollacoaster that was called revenge of the mummy and it was in the dark and lots of scary things popped up. The lights camera action was awesome. Me and mum liked it. We watched the Water world show and got really wet because we sat in the soak zone. If you ever go there do not sit in the blue or green seats or you will get really wet. It rained after that and we got even wetter.

Singapore

2010-11-28T14:24:00.000-08:00

After 17 hours of travelling, Corbin and I finally arrived at our hotel in Singapore at 10.30 pm Singapore time (or 3.30am NZ time) last night.

We left home at 10am NZ time and drove 2 hours to Queenstown airport. 30 minutes from home Corbin asks "Is this Queenstown?". Oh boy its gunna be a long day...

I have never flown internationally out of Queenstown before so it was a damn good job that we arrived 2.5 hours before the flight because we stood waiting for check in for 1.5 hours!!! I have never seen or been in such a slow moving check in line!!!

Because Queenstown is such a small airport I checked Corbins stroller in with our luggage but unfortunately I didnt think about the stop off/change of planes in Sydney. About 500metres into our long journey thru the Sydney airport I found a luggage trolley and popped Corbin into the basket of that and of course while browsing in a duty free shop on the way to the next plane, the idiotic shop assistant asked Corbin what he was doing in the trolley, that he was too big to be in there and he should be walking!!! What is it with employees at the Sydney airport??? Once again this man bent over backwards to be nice when I politely(?) informed him that Corbin was unable to walk and it was too far for me to carry him.

It was only a short 50 min stop over in Sydney then it was on to Singapore. Normally a couple of movies breaks the monotony of the 8 hr flight, but guess what? The were having huge problems with the inflight entertainment system and some of the plane couldnt get the service or sound and I couldnt get sound. Great!!! Thank goodness I took a trashy book with me. Corbin went to sleep about 2 hours into the flight and I read.

Needless to say we both went straight to sleep once we reached the hotel, however Corbin was wide awake at 4.30am (which was a sleep in if we were still in NZ). So we are in for another long day.

Anyway we have a couple of days sightseeing and a little shopping before our assessment on Wednesday. I'm really looking forward to seeing the ABR team and of course Leonid. I'm in dire need of a little encouragement.....

Queenstown, NZ

2010-11-18T13:23:00.000-08:00

We had a lovely day boating on Saturday. Beaut day but the water was freezing. Needless to say I stayed in the boat and did most of the driving, Including wacking the side of the boat into the jetty - oops!!! No hole but just a rather large sound of splintering fibreglass.

Corbin was delighted to have his first go on the disc - like the big kids (he normally goes in the donut with someone holding him) here he is with his dad (hes the little one with the yellow life jacket)

Master Jay was also stoked because he got up on water skis for the first time ever Not bad going when hemiplegia means your balance is not wonderful!

And here is one of the dare devil Miss Livee and her friend Emma, with a beautiful view of The Remarkables, Queenstown in the back ground.

Now all we need if warmer water and I might even get in..................

Off for the weekend

2010-11-12T13:06:00.000-08:00

We are away this afternoon to the beautiful Queenstown, NZ. Friends are in Queenstown this weekend and just by pure fluke there was a cancellation at the CCS(CCS Disability Action) holiday home (this is a holiday home that members can stay at for extremely cheap rates) and I managed to nab it for the weekend. We are taking the boat and counting on this beautiful spell of weather continuing for the weekend. So next week I'll post some photos of our weekend away so all the non-locals reading this blog can see what we here in Invercargill have at our back door (well 2 hours away anyway)

2010-11-11T13:06:00.000-08:00

Awesome - we won the Blogging Campaign!!!

2010-11-07T01:24:00.000-07:00

This weekend I've received some really exciting news! "For the Love of Corbin" blog has won the ABR Asia quarterly blogging campaign. I'm thrilled because it means 3months free machine rental for us. A huge added bonus so thank you ABR Asia and also everyone who reads this blog.

I told Corbin that his blog won and his response was "Its probably because I helped you" - OK I admit it adds a warm furry feeling when people read words from the mouths of babes and his stories are probably more interesting than what I've got to say, but come on Corbin I do most of the work!!! Ah the story of my life!!!

We are off for our next training trip in 3 weeks so I have lots to do before I leave. Perhaps first on my to do list for this week is to find somewhere (somewhere cheap) to stay when we get there.

Have a great week everyone - mine is going to be a ripper - I can just feel it....

Back to scool now (by Corbin)

2010-11-01T19:28:00.000-07:00

"I had a good day back at scool because I get to sit besied my best friend Sam and I'm close to my other friends Emma and Jackson too. The end." By Corbin

I think Corbin should be writing this blog himself, as he seems to be able to write more regularly than me. I have just found an old school book that Corbin has been doing some writing in and this little story was written 2 weeks ago on the first day of the term so I thought I would pop it in. Spelling is pretty good for a 7 year old (I have typed it letter for letter).

Well its a beautiful afternoon in Invercargill, NZ so I'm off to help with homework, then we will be off outside to enjoy the sun.

A Weekend Away

2010-10-25T13:34:00.000-07:00

I've just got back from a weekend away without any children. I know, its proof that miracles do happen!! Ha Ha.

Had a lovely weekend catching up with friends and family in Christchurch - yes the city that has been tormented by earthquakes, with over 2000 aftershocks since the big one 6 weeks ago. And not suprisingly while there we got a 4.8 aftershock to give us a small taste of life in Christchurch.

Although I was only away for 2 nights, the team missed me (I think). Well Corbin did anyway. He met me at the door with a huge squishy hug and gave me a little note with a picture of us on it and 23 X's and 25 O's (for hugs). How sweet.

My darling mother looked after 2 of 3 children and they had a wonderful time with a trip to the library and McDonalds in the park. Our awesome neighbour had master Jay once again. Where would I be without so many wonderful people in my life? Thank you.

Acts of kindness

2010-10-16T20:32:00.000-07:00

Over the past few months I havent been doing a great deal of manual ABR instead I've been doing lots of little things that have been put on the back burner since I started doing ABR with Corbin exactly 4 years ago this month.

So far I have done some much needed gardening, I've actually got our glasshouse in order - for the first time ever it actually looks half decent and is full with plants - tomatoes, peas, brocolli, cucumber, fancy lettuce and some little shrubs I'm trying to grow and we've got heaps of potatoes planted in the garden as well.

We've also redecorated Miss Livees bedroom recently and I've done some "spring cleaning" in various parts of the house too. Spring cleaning is not normally something I do - I normally have a clean out when we shift houses instead (At one stage we had lived in 11 different houses in 11 years, but now that has stretched out to 11 houses in almost 15 years because we have almost been in the same house for 4 years now, a massive record).

Most recently I've been redecorating at my grandmothers house. I had told Nannie that I would redecorate her hallway just after she moved into her house 8 years ago. Well that kind of got thrown out the window after Corbin came along not long after that and life took a u-turn for us. So anyway, 8 years later I've finally painted and wall papered the hallway and it just looks wonderful and she is over the moon. She is so grateful that you would think that I had given her a million dollars. To say thank you she made me yummy pikelets and the best apple crumble I have ever tasted. I really appreciated her gratitude and it makes me feel good to do something to help her out and make her happy (but I might have to stop doing things to help because her yummy food is making me fat!!!)

Recently our church did a community day, getting out and digging in to help out in the community. The place where I helped out was a bit of an eye opener. The lady and her children were about to be evicted because there was so much rubbish lying around the property. It appeared that they just opened the windows and doors and dropped their rubbish. It took about 12 people about 4 hours, and 3 skip bins full of rubbish to clean up the property.

These very different acts of kindness got me thinking. There are those people, like my grandmother, that you want to help out and do things for because she is so appreciative of any small act of kindness that you just want to keep doing everything you can to help. Then there are the people who sit back expecting others to do everything for them without even so much as a thankyou. They are the ones who probably need the most help but no one around them wants to help out because they are so ungrateful and lack basic curtosy and manners.

If only we could teach adults what most(?) children already know and that is that you get better results in life if you just use some manners!!!

Corbin goes to the rugby

2010-10-09T20:16:00.000-07:00

Corbin is an avid rugby supporter and enjoys yelling at the TV with his Dad every weekend. Tonight was the first time Corbin has gone and watched a provincial rugby game live. He has been so excited about this game for weeks. It was a 7.30 kick off and not a very nice night at all, but luckily Corbin and his Dad had seats in the stand. A hair raising game it was too. Unfortunately the Southland Stags lost the game and the Ranfurly Sheild goes back to Canterbury. The Stags had done so well to hold on to the sheild since the end of last season after a huge 50 year drought but unfortunately their reign is over. "Never mind" said Corbin "We can still win the ITM Cup Aye Dad?"
So go the Stags. Bring home the ITM cup!!!

Corbins Favourite Day (by Corbin)

2010-10-01T13:50:00.000-07:00

I got a lego game called minotaurus, space police lego and it came with a alien, I got ben ten lego, I got a lego plane too and I got robochamp. I liked my birthday because I got a hechog cake . We played crickit and jaill. Today on the 30th of september me and my sister played robochamp and I wun. Yesterday I PLAYED MINOTAURUS I wun mum lost. I gave mum a hug she played fair. The hechog cake was fug cake it had chocolite butons . When we played crikit I got lots of points I was a great picher because i m a great thrower. the end.

Happy Birthday Corbin

2010-09-29T13:38:00.000-07:00

Yes today is Corbins 7th Birthday.

He woke up very excited this morning, took his ABR machine off by himself and came into my bed for a cuddle. Yes he may be 7 but he's not too big for a cuddle with Mum! Within minutes Corbin asks "Do I look bigger?" So precious and innocent...

He had 3 friends from school around for a small party this afternoon which was all very exciting. Then the family came around for a combined tea with little cousin Meah who shares the same birthday. Meah is 2 today.

Corbin wanted a hedgehog cake so thats what I made him - very easy really, just fudge cake moulded in a bowl, iced with chocolate icing and decorated with chocolate buttons.

School Holidays Again

2010-09-25T15:10:00.000-07:00

Well school holidays are underway.
The spring holiday weather isnt at all like spring so far but at least the snow is gone and some of the water that was lying for days after the snow melted is gone too.

Miss Livee is pleased it is too miserable to go outside. She got her cast off yesterday and was told no sports, trampolines, anything with wheels or running around for 4 weeks. This is like asking a bear not to poo in the woods. In her words "I might as well be in jail!" and "why didnt they just leave the cast on?" The last a very good point I think!!!

We haven't got much planned except one very important event on Wednesday 29 September. Watch this space to find out what...........

Photos of the snow

2010-09-19T21:01:00.001-07:00

This is post card view from our lounge of our old shed complete with freezing cold and hungry sheep with baby lambs huddling for shelter...

The top one is of Miss Livee enjoying the snow.

The third is Master Corbin playing in the snow (The little dark blob in the middle behind his "snowman"). He was so excited about the snow, until he discovered that when you are sitting in 15cm deep snow you get cold really fast.

Snow

2010-09-18T19:40:00.000-07:00

Today it snowed in Invercargill. The first time snow has settled on the ground in Invercargill for 6 years. So obviously Corbin has never seen it like this before. I have been trying to post some photos but for some reason I can't. So watch this space....

The School Production

2010-09-10T21:59:00.000-07:00

This is a photo of Corbin in the their school production. Corbins class were robots and they did a little robot dance. Corbin was the robot arms and his little friend helping was the robot legs. Corbin had a great night and was so excited because this was his first school production. (We missed last years because we were in Sydney for ABR)

The Fathers Day Card

2010-09-04T21:48:00.000-07:00

Today is Corbins Dads birthday and tomorrow is fathers day in NZ (A big weekend with lots of chocolate no doubt). Corbin made his Dad this beautiful card at school and this is what it says:

"My Dad can play rugby better than Dan Carter in a scrum at the stadium. My Dad is an amazing helper and the greatest play fighter ever and the best boxer ever. I like my Dad and he likes me." Love Corbin

Another Broken Arm for Miss Livee

2010-08-31T22:06:00.000-07:00

Yes, after 3.5 hours at A & E tonight we have discovered that Miss Livee has broken yet another bone. Her left arm again. This time due to a fall while roller blading in our driveway. That is now 2 broken arms and 2 broken bones in her foot. She has a glow in the dark cast this time. Awesome effort my darling accident prone child.

The Budding Artist

2010-08-25T15:39:00.000-07:00

Nothing to report this week so I have instead decided to put a photo of Corbins self portrait on the blog. All the children at school did a self portrait last term and I am lucky enough to get to bring them home this week and of course display it with pride for all to see(?)

Looks just like him don't you think???

Winter bugs ...

2010-08-18T18:19:00.000-07:00

Well we couldn't quite make it through the winter months without any colds or flu's again this year.

Corbin started us off with a horrible cold (that led to a chest infection and ear infection for him) and has today returned to school after 12 days sick. He managed to pass the cold on to Master Jay, his Dad, then me and finally Miss Livee.

With a sore throat that feels like I'm swallowing razor blades and a head that I'm sure is going to explode I'm not much in the mood for blogging so thats it for this week - very short and sweet.

Corbins Paediatric Check Up

2010-08-11T20:14:00.000-07:00

In NZ we visit the Paediatrician once a year for him to monitor Corbins progress. Our annual visit was today.

For the past couple of years we have gone through the usual round of questioning. Along the following lines:
"Are you doing physio every day?" Yes (white lie)
"You know how important it is to do stretching everday to maintain Corbins flexibility?" Yes (another white lie because I don't agree)
"Have you had an orthopedic check up recently?" Yes - last year just after we saw you (this is true but I left out the part that I cancelled the one we were meant to go to in March)
"Are they (Orthopedics) going to "try" botox?" No they wanted to do an achilles release but I would not agree to the surgery.
"Why is that?" Because he can get both ankles to 90 degrees so I fail to see what benefit this surgery would give. At this point pediatrician has a look at Corbins legs and does a few basic stretches and some "manipulation".
"He really does have quite good flexibility and a good range of motion doesn't he?" Yes
"I would be inclined to agree with you - an achilles release isn't the right option at this time. Are you still travelling to Australia for treatment?" Yes (well define treatment!)
"Do you ever see a doctor when you go?" No (the truth)
"Are they more physios and the likes?" Yes (well kind of!!!)
"Well keep doing what you are doing because its obviously working" (I know that!!!)

Well thats it for another year I guess. I can't wait for the day when Corbin walks into his clinic and then maybe the orthodox medical profession will be ready to listen to the real truth about ABR ............

Another Busy week comes to a close

2010-08-07T19:14:00.000-07:00

My beautiful Miss Livee turns 10 tomorrow. We are in the middle of a 3 day birthday!!! Last night she had 3 friends for a movie night and sleepover, I've just dropped the last home and I'm in the process of preparing for a family dinner tomorrow, being her actual birthday. Again I sit here with a headache thinking why on earth do I keep doing this to myself. And then the answer is easy - because its her special day and I want her special days to be something she will remember.

So Miss Livee - I hope you have a lovely birthday "weekend" and please, please stop growing up so fast!!!!

Wheres the wheelchair?

2010-07-30T17:12:00.000-07:00

How could I be so stupid?

As per past posts I have been taking Corbin on the bus a bit lately. This term the bus no longer comes past our drive so, weather permitting, on a Friday morning I drive 1 km to meet the bus at the closest collection point, then I go with Corbin on the bus and off load him at the other end, then I walk about 4 km back to the car. What I have normally been doing is I leave Corbins wheelchair at school on Thursday ready for when we arrive the following morning.

This morning we arrived at school - no wheelchair - OMG what an idiot, I'd left it in the car!!! This is a bit like sending your "normal" child to school with their legs taped together so they can't move. How could I completely forget about Corbins essentials. Maybe it was a momentary lapse in that dream world I sometimes visit where there are no "extras' required.

So after I walked back to the car - I then had to drive the wheelchair to school - talk about a time waster!!!

My Little Scholar

2010-07-29T15:54:00.000-07:00

Every Tuesday morning I help with spelling in Corbins class. My job is to test the children on their "list" words to see it they are ready to move on to the next "list".

This week was Corbins turn - He has been practising "List 5" words all last term and today he passed - Awesome !!!! This means he is now working on "List 6" words which is a 9.5 - 10 year old level. How cool is that?

Keeping busy

2010-07-26T15:25:00.003-07:00

Oops I have been so busy since the kids went back to school last week that I have forgotten to blog - I wonder if blogging twice in one week will make up for it?

The school holidays went fast as usual. As well as going to Kidzone, Miss Livee and Master Corbin earned the opportunity to go to two movies (earned as in did lots of jobs for me). They chose Shrek and Marmaduke. Other than that we didnt do much.

First week back at school has been busy. In addition to coaching Miss Livees Tuesday night netball team, I am coaching another team for an interschool competition again this year and we had 2 practices for that last week. Thats always enough to cause a few more grey hairs!! Plus I'm always kept quite busy with Miss Livees afterschool activities which include Netball, Jazz, Hockey and Keyboard. She does quite a few activities but thats because even though I have 3 children, I only have 1 that can do all these things.

Master Jay tried a few sports over the years but he didn't like all the running around most of them entailed and he had a go at music/guitar but has settled with what he is passionate about, motorbikes and cars. He spends hours and hours in the shed "tinkering" with engines. My budding mechanic!!

And Corbin - well I guess its early days yet - maybe music next year. He has great aspirations to be an All Black when he walks. I think its a bit early to burst that bubble yet......

Talkative little boys....

2010-07-12T20:05:00.000-07:00

Well we are into the second week of the school holidays. Corbin has been quite excited to have some time at home with his teddies and has been chatting away constantly to me and anyone or anything that he thinks is interested in hearing his voice!!!! I'd had enough of the verbal diahorea coming from this mouth this morning that I told him to stop flapping his lips just for the sake of it - the worst thing was he thought I was being funny!!!!

I have made an observation of the male sex over the years as Master Jay has grown up from a very talkative little boy to a monosyllabic grunting teenager and as I watch (and listen to Corbin)I'm further convinced my observation is very very true. My observation is this. Males use up all their words by talking constantly before they hit puberty and from then on a conversation with most males is like getting blood from a stone. Obviously this is a huge generalisation but probably quite accurate non the less. One day I might research this further............

Zidzone

2010-07-07T17:18:00.000-07:00

Today I took the children to the Invercargill Zidzone festival. A wonderful program that Invercargill is very lucky to have. Everyone had a great day doing many wonderful activities. Corbin made a toolbox and a marble game in the woodwork room and a hand puppet in the sewing room (alright Corbin didn't make them - I did. But he did help hit the nails in in the woodwork room). He also got his hair done and a we made a cool fake cut on his hand (look hard in the first photo) and they loved the "paddle jumpers" (second photo).

We had no sooner left for the day and Miss Livee and Corbin are both talking about what they are going to do next year.

Happy Birthday Dave

2010-06-30T02:06:00.000-07:00

Today would have been the 40th birthday of our very dear friend Dave, who was tragically killed at work in August last year. We are going to Christchurch this weekend for his headstone unveiling and to celebrate his 40th birthday with his family and friends. Yes, his wonderful wife Teri is honouring him and throwing him a 40th birthday because she knows that Dave, the ultimate party man, would be gutted to have missed out on his own 40th birthday. I think she is one awesome lady. Happy Birthday Dave - we all miss you and love you xxx.

Mid year report

2010-06-29T01:55:00.000-07:00

Its that time of year again - mid year - when my 2 primary school kids get their mid year reports. Both Corbins and Miss Livees were awesome again. It is with a note of extreme proudness (and a touch of modesty) that I thank God that 2 of the 3 children appear to have taken after their mother when it comes to academic ability!!!

Corbin, who is not 7 until late September, is reading at a 8.5 year old level, spelling at a 9 year old level and above average in his maths as well. I am so delighted, at least he has intelligence on his side.

And this is his teachers comment (and by the way his teacher is a very honest, straight-up person who isn't flowery and full of praise unless it is deserved):

"Corbin is a delight to have in class. He is a kind and caring class member who is popular with his peers and adults. He takes responsibility for his classroom and willingly does any job asked of him. Corbin shows perserverance when things are difficult for him physically and academically. He is making excellent progress."

The toothless grin from ear to ear...

2010-06-21T20:04:00.000-07:00

I have to tell you about the size of Corbins toothless grin on Friday. It was huge, from ear to ear, and the grin stayed there for a whole 10 minute bus trip.

And now I'll tell you why. Ever since Corbin started school he has desperately wanted to go on the school bus that comes past our house just like his brother and sister did before him. Well on Friday I gave him his wish - he was a bus kid for the first time ever. Pete, the bus driver, is a lovely kind hearted man and he made a big fuss of Corbin, telling the parents that were waiting at the various stops that he had a special guest on the bus that morning and Corbin just thought he was the bees knees. It was gorgeous. Of course I had to go with him to get him off the bus at the other end and then I walked the 5.1 kms home to our house. Even though it was very cold I almost bounced home because I knew how much the little bus trip had meant to Corbin...

Unfortunately Corbins days as a "bus kid" will be short lived because the ministry of education in NZ are withdrawing our part of the school bus run meaning the bus will not be coming past our house as of the next school term. So it will be back to travelling by car. I intend to take him on the bus as much as I can over the next 2 weeks, so fingers crossed that the weather holds out so I can make it home without getting drenched!!!

How can I stop the knees wearing out???

2010-06-14T12:00:00.000-07:00

This is a 2-fold question. How do I stop the knees of Corbins trousers wearing out so quickly and how do I stop his little knees themselves from "wearing" out, ie how do I protect them? Our knees weren't designed to be crawled on all our lives, its our feet that have the thick skin to protect them not our knees.

I double knee (ie sew in a 2nd layer of fabric) all his trousers before he wears them - this gives him an extra couple of weeks out of them, but on average he goes through the knee of a pair of trousers about once every 3-4 weeks. This is about the same time span as he goes through a pair of shoes!!!
I've tried numerous things to protect his knees and his trousers including skateboard knee pads (but these hindered his crawling), leather patches & padded patches. What other options are there???

Before the new teeth come in....

2010-06-07T16:07:00.000-07:00

Corbin lost both front teeth 2 weeks ago and I've been meaning to post a photo of the huge gap that remains, but given I've been a bit slow, one of the new ones has started to grow.
Corbin has developed a few speaking impediments due to the lack of front teeth. Its classic. The 2 older children only lost one tooth at a time so this is a novel experience for me.

I offficially have a teenager

2010-06-03T16:11:00.000-07:00

Today is Master Jays 13th birthday.

As always his birthday is tinged with bittersweet memories of the horror of his birth and first few months of his life. It is so hard to believe that the tiny little 1080gram baby I gave birth to 13 years ago, and whos survival in those early days is nothing short of a miracle, is now a teenager, on his way to becoming a man. I am incredibly proud of him. Despite the fact he has a tendancy to view the glass as half empty sometimes (hey but don't we all sometimes), as a result of the "obstacles" he has faced in his life he has become an overcomer. He has learnt not to give up, and he finds another way of doing things, his way.

He is a polite and decent young man and hopefully we have installed enough good values in him to see him safely through his adolescent years.

Happy Birthday my beautiful boy. I love you, xxx Mum.

Rain has its benefits!

2010-06-01T15:49:00.000-07:00

Oops I'm a bit late with my weekly blogging.

The past couple of weeks have been great for Corbin at school on a social level because its been rather wet here in Invercargill which means inside play at morning tea and lunch time for everyone. This is great for Corbin because he is actually on a par with his classmates in the classroom, ie he can interact with them because there is no running around as 6 year olds do outside, and they sit and play games and build friendships. And he doesnt have to cope with kids fighting over who is going to push him in his wheelchair next. And more importantly because he isn't as exhausted he had his first full week at school ever last week!!! Yeah!!!

So as the title says - rain does have its advantages, for Corbin anyway.

This week its frosts, very heavy and very cold frosts. I like frosts because you at least get some sunshine later in the day but I am yet to find the silver lining for Corbin. We are back to outside play at school which means, unlike other children, because Corbin is not active he gets extremely cold and has inevitably developed yet another cold. He has come home soaking wet and filthy 2 days in a row from doing "fitness" outside on the wet ground and from water and mud off his wheels. Hold on - I know - the silver lining must be at least there is sun to get all the extra washing dry!!!!!!!!!!!

HOW CAN PARENTS COPE?

2010-05-16T18:27:00.000-07:00

Once again this has been taken from the "Dealing with the Feelings" booklet as mentioned in the previous posts.

"Coping" doesn't mean you don't find life difficult sometimes, it means you find ways to live with the situation most of the time. The following are some ways that people managing the "disability juggle" have found useful.

CHANGING "ACCEPTANCE" TO "LEARNING TO LIVE WITH IT"
When loss of any kid occurs grieving people hear a lot of advice from others about the need to accept what has happened. When a child has a disability this is a particularly unreasonable expectation. Though you might be able to find silver linings for this cloud sometimes, the fact remains that for many people it is a cloud, at least at first. Sometimes life doesn't make sense and isn't reasonable and fair. Don't let anyone underestimate how hard it is to abandon your dream of life as it might have been to take on the reality of life as it is now. You don't hve to feel good about this, but facing the reality of it so that you can put your energies into dealing with the situation, rather than fighting if, does make things more manageable. Obviously some people find this easier to do than others.

HAVE A SENSE OF HUMOUR
Parents love to have a laugh about the sometimes appalling situations they find themselves in with someone who's been there and understands. Family members often find that habing a good laugh relieves tensiion and lifts their spirits like nothing else can.

DEVELOPING A POSITIVE AND COOPERATIVE SPIRIT IN THE FAMILY
When your family is faced with a lot of demands its worth investing time and effort into building this kind of spirit when you can. Prioritise things that yo enjoy as a family when you can. A cooperative spirit is also created when families talk through issues and make decisions together.

USING YOUR STRENGTHS
Living with chronic sorrow associated with having a child with a disability can leave people feeling inadequate and helpless. It often helps to think about your strengths and how you might use them to cope with the situation. ie if you are a people person, make sure you get out with others or join or start a support group.

LOOKING AFTER YOURSELF
Ask many parents of a child with a disability where their own needs come in relation to everyone elses and they'll usually admit that they put themselves at the bottom of the list. Mothers are especially good at this kind of self-sacrifice, but they are also often the first to agree that a break makes a big difference in their attitude to carrying on.. Doing something you enjoy, getting out and reminding yourself that there is life outside your usual routine really helps.

Well that is all the booklet has for coping, and again I am compelled to say it, God bless all parents raising a child with a disability, doing the disability juggle.........

More on Chronic Sorrow....

2010-05-11T17:33:00.000-07:00

Yes more depressing stuff - but hey it may just help someone out there understand that what they are feeling comes with the territory.

Again a lot of what is written here is quoted directly from the "Dealing with the Feelings - Coping with your child's disability" booklet as per last post.

HOW DOES CHRONIC SORROW AFFECT PEOPLE?

In a word, differently! But some of the more common feelings are:

FEELING GUILTY
Many parents find it hard to admit to thenselves or each other that they are grieving abou their chil's disability. To do so seems like a betrayal of their child, as if they would love them more if they were "normal". They may feel guilty about their feelings of resentment or longing that things could be different.

LOOKING FOR SOMETHING OR SOMEONE TO BLAME
They may search for something or someone to blame in an attempt to make sense of what has happeneed. Where there isnt an obvious reason, parents may blames themselves either rationally or unrationally

FEELING ANXIOUS
Every parent feels anxious about their child's wellbeing and safety, but when your child has a disability they are more vulnerable.
Having a child with a disability can make people feel anxious for another reason too. Suddenly they are dealing with difficult, relentlessly stressful issues. They might feel out of control of their life and become anxious about what else might be in store for them and/or their child or they may feel like they can never truly relax.

LIFE IS UNPREDICTABLE
For parents who like to have a strong sense of being in control of their lives this inability to manage their life can feel very stressful.

FEELING NUMB
Some people deal with very painful feelings by shutting down emotionally. They function best by keeping a lid on strong feelings of sadness, anger or fear.

NEEDING TO FIND MEANING
The Why us, why our child, why has this happened thinking.

FEELING BITTER AND CHEATED
Many parents feel like they have been cheated - that they have been dealt an unfair hand....

FEELING ALONE
Parents sometimes feel like they are under siege, standing all alone with their back against a wall. In a world designed for "normal" people, whrer their family life is very different, such parents often feel very alone.

Well next week will be a bit more positive with some keys to coping............

Chronic sorrow and grief

2010-05-04T16:01:00.000-07:00

The following post has parts directly quoted from the booklet "Dealing with the Feelings - Coping with your child's disability", written by Lois Tonkin with Dr Pauline Stewart.

When people talk about grief, they usually mean the loss they feel when someone dies. But other losses bring grief with them too.... People with a disability or child with a disability experience many losses, a living loss.

THE LOSS IS ONGOING
Though parents come to love the child for who they are, they may still grieve for how things might have been if it weren't for the disability and as the child grows older the difference between what might have been and the reality of what is constantly changes, therefore parents must adapt to new losses as their child grows older....

THE LOSS IS UNACKNOWLEDGED
Many parents say that the only people who understand how they feel are other parents with a child with a disability. And because other people don't acknowledge their ongoing loss, many parents don't feel supported in their struggles to deal with it.

THERE ARE CONSTANT TRIGGERS
The frequent reminders that their child will never be able to do many of the things most children of the same age can do bring a sorrow that never goes away completely. The feelings of grief that comes with having a child with a disability are always "in your face" because the reminders are always there.

SOMETIMES THE LOSS IS HARD TO PIN DOWN
Many parents talk about feeling cheated. Their child is not the healthy, normal child they expected. They find it hard to accept the disability that has robbed them of the future they hoped for, for them and their child, they grieve for what should have been...

Grief theorists call this grief Chronic Sorrow."

Have you ever heard of Chronic Sorrow???

2010-04-28T01:45:00.000-07:00

Most people see me as a strong, confident and independant person who is highly passionate about her children. This is all just a mask of the real me. Most people wouldnt have a clue who I really am. Having children with "issues" has changed me considerably over the years, some things for the better, most for the worst, one of the not so good ones is that I regularly have highs and lows, ups and downs, depression and sometimes I just struggle to cope. I find it difficult to relax, I battle with anxiety and quite often feel alone in my struggle and very overwelmed with what life has dealt. Sometimes it feels like if I stop fighting for my kids for just one moment, the wheels will fall off. All this has led to me becoming a very insecure person, a far cry from the strong person I once was.

It hasn't been an easy road for our family and yes those closest to me, especially my husband, have born the brunt of my anxiety and depression. I always felt guilty - why couldnt I cope, its not that bad, there are people worse off than me, pull yourself together, get on with life etc, but I never seemed to be able to. I thought it was just me and my personality, however I have just read a booklet on Chronic Sorrow that parents of children with disabilies experience.

It came with mixed feelings. On one hand it was quite relieving to know that I'm not alone in alot of the feelings I have and the other hand great sadness for everything I've lost because I haven't acknowledged or dealt with these feelings for all these years..

The opening 2 paragraphs of the introductions says:

"Many parents who have a child with a disability find themselves constantly doing a series of juggling acts. There is the organisational juggle of managing life with work and family demands and a range of health and education professionals to deal with. There is often a financial juggle if one parent is unable to work or if there are expensive therapies or travel to pay for and there is the emotional struggle of loving their disabled child, but wishing things were different, trying to be positive and hopeful for their future, but feeling sad, angry and worried about it all at the same time, trying to accept their child as he is and at the same time hoping things will improve.

Parents often find this juggling very difficult. It is complicated and exhausting. Some parents are reluctant to focus on their feelings of sadness, anger or guilt. They feel that staying positive is their best strategy and that acknowledging their difficult feelings will drag them down."

Now if you have a child with a disability you will instantly relate to this, as I did. I cried and cried finally realising I was not alone with the battles going on in my mind.

God bless every single parent raising a child with a disability..........

More on chronic sorrow will follow.....

Another Inspirational quote

2010-04-20T01:50:00.000-07:00

It has not been a good couple of weeks in our house, so this post is incredibly quick and not at all orginal or interesting, but I have 3 little people who need me more than ever right now, so I need to get off this computer and put my house in order so to speak. So this is it for the week:

"No man can possibly know what life means, what the world means, what anything means, until he has a child and loves it. And then the whole universe changes and nothing will ever again seem exactly as it seemed before."
LAFCADIO HEARN

How true............................

ABR Manual Hours to date

2010-04-11T01:16:00.000-07:00

OK I've had a count up.

A total of 2304 manual hours over 3 years and 4 months of ABR, or an average of 15 hours per week (excludes the 3 weeks/year when we travel to Australia for ABR - it does not include holidays because we don't have many holidays from ABR).

In addition to these hours, there is the time spent on setting up for each different application, making new foams, "fluffing" up the old ones, recording home videos for each clinic trip, keeping records, doing this blog etc, etc.

Wow and people have the audacity to ask me when I'm going back to work!!! On that note I do actually have another part time job, besides being a therapist and a mother, I'm an Accountant believe it or not. I have a University degree in Accounting and Finance, but currently I only use my qualification/brain as my husbands small business accountant/bookkeeper. As you can see ABR "technician/therapist" was not my chosen profession.

I have to admit that I do get help from my husband and my wonderful mother. Without whom I would have never been able to achieve these hours.

My husband averages about 2 hours per week. He does the "active exercise" which is one of the many ABR "tools".

My darling mother normally does about 3 hours per week. She currently focuses on the "ball rolling" technique.

I average about 10 hours per week. Some weeks its more, some its less. It just depends on how much is happening for the week. Initially I did it all, but that wasn't working for anyone and its all about finding a happy balance that works. And as they say in ABR circles "its a marathon, not a sprint".

So as you can see, ABR is no miracle cure, and effort is required, but at the end of the day its the only thing that has helped Corbin and the future of our gorgeous little boy is what its all about for us.

Easter

2010-04-04T16:52:00.000-07:00

Ah what a buzz in our house this morning as the children awake to see what Ester Bunny (Corbins pronunciation) has left for them, and then when their treasure is discovered, and eaten, soon arrives the hyperactive excitement and volume that can only follow a chocolate fix in our household !!!!!

I do hope amongst the chocolate that you take a moment to remember what Easter is really about.....

Inspiration for the week???

2010-03-30T18:10:00.000-07:00

Unfortunately I havent gotten around to working out how many manual ABR hours we have done to date. My week has once again turned to custard, so this is just a little something until I do get an opportunity, not too sure when that will be as school holidays start here in NZ on Friday this week!!!

Anyway,I came across this saying the other day out of a newsletter we receive. Personally I think its brilliant and I hope it gives you something to ponder......

'Even if you are on the right track, you will get run over if you just sit there' (Will Rogers)

I think I should post some of my more favourite sayings or inspirational quotes in the future. I have quite a few thats for sure.

ABR Machine Hours to date

2010-03-23T16:37:00.000-07:00

Over the next couple of posts I thought I would give some statistics on what has been involved in our Advanced Biomechanical Rehabilitation (ABR) journey so far because very few people in our lives know how much time and effort we (me, my hubby and my Mum), devote to Corbin's rehabilitation.

Firstly I'll start with the machine applications. Most ABR families hire a machine that simulates the manual technique that we perform on our children. The child is "wrapped" in foam constructions and machine bladders, which are hooked up to an actual electronic machine, for as little or much time of the day as the parents consider doable.

Corbin has "worn" his machine to bed most nights for the past 3 years. We used to do machine time during the day as well but it just became too difficult once he started school. Even when we go on holiday, or if Corbin stays at Nana's for a night, the machine goes too. At a guess I would say that Corbin has probably slept without the machine for 15 nights maximum in the past 3 years, and most of them would be when he was too sick.

Because Corbin is getting older we recently came up with a plan that Corbin has 1 night off every second weekend, which works fine because big brother Jay can use the machine when Corbin isn't. This gives Corbin a little freedom and it means he can now stay over at Nanas house without Mum having to worry about stopping by at bedtime to hook him up to the machine. Everyone wins with this arrangement.

All in all we have clocked up 13600+ hours actual machine time to date, or an average of 12.5 hours per day (ie over half Corbins life) for the past 3 years.

Now the time commitment required for the machine is not huge, but it does take me around 5-10 mins every night to put the machine on Corbin and another 5 mins to take it off and pack it up in the morning, I also have to make/change the foam constructions every week which is approximately 15-20 mins per week. So that adds up to 1.5 hours per week or 1642 hours for the past 3 years.

The machine is very much a part of Corbins life. As he has been using the machine since he was 3.5 years old he kind of knows no different. He does moan about it sometimes and he has asked me how long he will have to have the machine for and I just told him he will have the machine "until he walks........." - he has never mentioned it since.

Next post will be on the ABR Manual hours to date - that will be interesting even for me!!!!

From the mouths of babes

2010-03-16T23:31:00.000-07:00

Corbin quite often has ample offers of help at school. The children take turns at pushing him around at morning tea time and lunchtime, as needed. Sometimes it can create arguments and quite often leads to Corbin getting annoyed followed by him being rude and bossy.
The other morning I was helping in his classroom and Corbin was working away beside a lovely little girl called Eilish. They were talking away then I heard her ask Corbin if she could push him in his wheelchair at lunchtime that day. Corbin very matter of factly said "Only if you pay me" ..... to which she replied "How much do you want?".

I wonder when will the novelty wear off and when will he have to pay for someone to help him.?????

THE BUDDING ATHLETE

2010-03-10T19:21:00.000-08:00

Today was the Southern zone school athletics, where all the children from 6 Southland schools, including Myross Bush School, participate in athletics. The 5 & 6 year olds don't do proper athletics they do take offs like tossing small bean bags instead of shotput, jumping over 2 ropes on the ground instead of long jump etc.

Corbin and all the rest of his classmates were all very excited to be participating - it is a highlight of the school year for most of the children. Corbin, bless his little heart, has no idea that there is no way he can do any of the running or jumping events the same as the rest of the children - He just thinks his version of long jump (ie crawling over the ropes) is what you are meant to be doing and he truly believes he is competitive with his peers. For the running events Corbin had decided to crawl rather than use his wheelchair, he had told me that this was because "I can't go fast enough in my wheelchair" (ie self propelling the chair on the grass is not an easy job for a very small 6 year old).

Anyway, on our way to the athletics stadium this morning Corbin said to me "Would you give me a treat if I win my running race?" I chuckled to myself and said "I'll think about it....."

Ironically, my beautiful Miss Livee, who has all the ability in the world, does not have a competitive bone in her body nor the desire to do well at athletics and hence would rather almost "skip" the 100m race than even attempt to use her God given ability!!! If only I could unite Corbins character and determination with his sisters ability - I would have one awesome athlete........

THANK YOU FOR THE GIFT OF SPEECH

2010-03-03T20:04:00.000-08:00

Corbin is a very, very deep thinker for his age. At the tender age of 6, Corbin already has plans for his future. Its almost like he feels he needs to have his future signed and sealed now!!!!

Corbin is also extremely talkative (which I am very thankful for - I do not take much for granted - there are so many parents we know that would dearly love to hear their precious children speak) so on our 7 hour car trip home from Christchurch he had plenty of time to "chew my ear".

He wants to be a builder like his Dad, and then he kindly offered to do the bookwork/accountancy for the business to help me out (how sweet). He intends to live in a bus, because "that would be cheaper than a house wouldn't it Mum?". The bus needs to have a place for his tools and it needs to have an office, "and I wouldn't need a car as well would I Mum? "

He is not going to have a girlfriend or a wife because he doesn't want to spend all his money on one (I have no idea where he got the idea that girlfriends and wives cost money!!! I didnt have the heart to him that it is actually children that cost the money).

I laughed to myself for the first 2 hours of his constant babbling, then I tried desperately hard to activate the "off" switch. Finally with 1 hour from home he went to sleep.

Thank you for the gift of speech .....................

Home Again

2010-02-24T10:39:00.000-08:00

Corbin and I have been home for a week now. It was so great to get home, not that I didn't enjoy catching up with family and our very dear friends, but at the end of the day there is no place like home.

Corbin has settled back into school well. He has had some "catch up" testing over the past few days and I'm so proud of him - he has leapt forward 3 reading levels since the end of last year, and this means he is reading well above his age. Maybe we have a brilliant mind in that not so brilliant body!

AWAY AGAIN

2010-02-15T19:39:00.001-08:00

When most kiwi kids are all settled back in school for another year, Corbin and I are in Christchurch for our 4th week of Hyperbaric Oxygen therapy.

Not only has Corbin missed the start of his school year, we are also missing our summer in Invercargill. Despite what the rest of NZ think, we do not have penguins walking down the street in Invercargill - in fact over the past 4 weeks Invercargill, the bottom of the world, has had better weather than most of the country and unfortunately Corbin and I are not there to enjoy it.

I have never liked being away from any of my children for more than a couple of days. They are my world and they are all still at an age that I am their world. I miss them terribly...

Unfortunately I have spent way to many weeks away from my other 2 children (and husband) in the pursuit of a better life for Corbin, and sometimes we all suffer for it. For example, when your beautiful and sensitive 9 year old daughter hugs you tightly, not wanting to let you go, then with tears streaming down her face she whispers quietly to me "I don't want you to go Mummy....", it is not good for ones heart.

LIFES CURVEBALL

2010-01-25T21:56:00.000-08:00

When you set out to have a family you don't for one moment ever think that you will have a child with a disability. You might know of people with disabilities or people with children with disabilities but it never occurs to you that it will happen to you, so when it does happen to us unfortunate few, I can assure you it is gutting. We weren't born prepared to face life with a child with a disability, just as people aren't born perpared to face life with dehabilitating diseases or any other of lifes curveballs.

I've had people say to me, even someone in my own family "I don't know how you do it (raise a child with a disability) - I could never do it......." Well, like I said, just like anyone else I wasn't born prepared for this, and its not like I had a choice. You just do the best you can with what you've got, thats all you can do, thats all anyone can ever do............

Thats not politically correct

2010-01-25T21:40:00.001-08:00

For those of you that object to me classifying my child as something other than "normal" (as in the last post) I say get over it. The western world has taken politically correctness way too far. Corbin is quite simply not your normal/average child, I mean if he was normal then he would be walking just like 99% of children his age, so therefore why not call it as it is??? Calling him "physically challanged" is not going to change a thing, so I see no point in getting caught up on the labels.

WHY ABR?

2010-01-25T20:00:00.000-08:00

Almost 4 years ago, when Corbin was 2.5 years old, his paediatrician told us that it would be highly unlikely Corbin would ever walk independently. Naturally I was devastated to say the least because until then I had naivety on my side and was pinning my hopes on it just happening one day.

It is so hard to describe what it feels like as a mother/parent to have someone tell you that your child with never be "normal" or lead a "normal" life. Crushing, gutting, like someone ripping your heart out and stomping on it, and there is absolutely nothing you can do about it!!

I was truly gutted and naturally had a few emotional "issues" to deal with. My way of dealing with it was to ask God what to do. I fervently prayed for the answer (now I'm not overly religious but I do know that there is a higher being and I call him God). Was this Corbins lot in life, was I meant to just accept it or was there something else I could do, I needed some guidance, I needed a sign.

After 1 week it happened, out of the blue there was a newspaper article (in the Southland Times - the one and only newspaper in Invercargill) about a local mum who was doing ABR for her son with CP. To further put this in perspective, at the time there were only 2 families in NZ doing ABR and 1 just happened to be in our neck of the woods and just so happened to contact the newspaper that week, and I just so happened to read the paper on that particular day which is not something I normally do...... I believe in signs, do you?

I looked up the website quoted in the article and was amazed at what I saw and instantly thought it was too good to be true. My gut instinct told me that this is what I had to do but naturally enough for me my head procrastinated and had to "ponder" the idea for quite some time. 5 months later I went to my first ABR clinic in Sydney, Australia.

My Darling Boy

2010-01-12T16:35:00.000-08:00

I thought it was time I figured out how to put a photo of the major topic of conversation, namely Master Corbin, on to this blog. I'm not extremely computer literate mainly because I have no time to play or experiment, so here goes...

Easy........ This is Corbin enjoying the beach, which I must add is not in Invercargill, NZ where we seem to be having yet another Winter instead of Summer!!!!!!

Back in to it

2010-01-04T22:48:00.000-08:00

Happy New Year to everyone. I sure hope this year is better than our last one. Its amazing how a new year can bring with it new hope and possibilities for the year ahead. Unfortunately the dawning of a new year only happens once a year. When you are a parent living with your childs disability on a daily basis, sometimes that feeling of renewed hope for the future is needed more than once a year. Who am I kidding, you dont have to have a child with a disability, you just have to be a parent to need this feeling of renewed hope more than once a year!!!!

Well, now that the Christmas and New Year festivities are all over its time to get back into the ABR way of life. For me that means a couple of hours of manual ABR every night when Master Corbin is asleep. Its hard to get back into the groove again, but if I dont do it, no one else will.......

Another year almost over

2009-12-28T14:12:00.000-08:00

Wow, Christmas has been and gone again, as has my birthday (I'm one of those unfortunate people who have a Birthday just after Christmas when everyone is either away, or busy trying to get away on holiday), and its almost a new year.

I've been having a wee break from manual ABR over the past few weeks but will get back into the swing of things in the new year. For now I am just enjoying the break and spending some time with my wonderful children....

Merry Christmas

2009-12-23T22:59:00.000-08:00

This is a very quick one tonight because there is still so much to do. Master Corbin has gone to bed very excited about Christmas Day tomorrow. He has asked Santa for a Ben 10 Alien Creation Chamber - exactly what every 6 year old boy needs I'm sure. I on the other hand have asked Santa (on Corbins behalf) for a set of little legs that work properly!!!! This is the standard request for me.......

Anyway Merry Christmas to all. May all your wishes, dreams or prayers come true this Christmas.

Things are not always as they seem

2009-12-16T03:07:00.000-08:00

For purely financial reasons, Corbin and I generally travel to Sydney for ABR clinics by ourselves. Although Corbin is not very big for 6 years of age (which is so not due to lack of food intake, it is something that goes with the territory for children/adults with Cerebral Palsy) now that he is getting bigger it can sometimes be a struggle carrying him on and off the planes, together with our rather large back pack. However while I still can carry him, ie until my back gives up completely, I do carry him reasonably frequently just for convenience.

On our last trip to Sydney in November, after disembarking from the plane it was discovered that there were no wheelchairs or strollers available at the gate for me to put Corbin in for the rather long trip through the Sydney airport to customs and the baggage claim. So rather than wait (because I had to be at an ABR workshop in Parramatta in an hour and a half - nothing like cutting it fine) I told the air hostess not to worry I would be fine. So I started walking down the corridor.

A very concerned airport staff member (complete with walky talky in hand) in her rather loud and abnoxious Australian twang said to Corbin "You're too big for your Mum to be carrying you".

I should add here that I had been up since 5.30am NZ time, I was cutting it fine to get through customs, get our luggage, navigate the Sydney rail system to get to Parramatta and then find the hotel where ABR was to be held, all with me pushing Corbin in the "big kids" stroller with one hand, back pack on my back and towing a big suitcase behind.

This is not the first time someone has said this, in fact it happens quite regularly, but for some reason on this particular morning I just couldn't let this one go. I think it was the fact I didn't get much sleep - or it could have been the Australian twang. I stopped in my tracks and "politely" said to the lady "You know sometimes things are not always as they seem - I would dearly love to put him down and have him walk but he can't!!!"

The poor lady was rather embarassed and then tried desperately hard to apologise by being overly helpful, I ended up feeling a bit bad for opening my big mouth, but hey she did manage to get us an airport stroller pretty quickly and even got someone to meet us at the baggage collection and help get our things all the way to the train.

So next time you see someone you don't know carrying an older child - don't open your mouth - there may well be a perfectly good reason for it.

Where do you start?

2009-12-11T01:45:00.001-08:00

This blog has been set up to follow our journey with our youngest child, Corbin. Corbin has Spastic Diplegia, a form of Cerebral Palsy, as a result of bilateral Peri Ventricular Leukomalacia.

We have been doing a revolutionary "therapy" called Advanced Biomechanical Rehabilitation or ABR for short (www.blyum.com) since November 2006. And this blog is an endeavour to raise awareness of this wonderful rehabilitation technique, the "carrot" for us being a discount in our costs if we blog regularly.

There have been huge mountains to climb and obstacles to navigate already in Corbins first 6 years of life but the following is a very, very brief summary to bring you up to speed.

Corbin was born in September 2003, 12 weeks early, weighing a whopping 1140 grams (slightly more "cooked" and slightly bigger than our eldest son who weighed in at 1080 grams). He was a very healthy premature baby and I thought after the shitty deal we had first time round with our eldest son, that all would be fine for Corbin. Well it wasn't. A routine brain scan at birth revealed Corbin had Bilateral Peri Ventricular Leukomalacia (in English this means "around the brain there are white masses") PVL is caused by a lack of blood supply to the brain and suprisingly enough is not necessarily due to his prematurity!!! As a result of PVL Corbin has spastic diplegia, one of the milder forms of Cerebral Palsy.

For those of you who know nothing about Cerebral Palsy, the orthodox medical profession say that diplegia primarily affects the legs. For Corbin this means that he can not stand or walk independantly. We were told in May 2006 by our Paeditrician that it would be "highly unlikely" that Corbin would ever walk independantly. Because I am a highly stubborn, and yes sometimes pigheaded individual, I was not going to lie down and let that be Corbins lot in life. Those 2 words "highly unlikely" were what led me to ABR.

Corbin is a bright little button who's "issues" are purely physical. His cognitive ability is at an age appropriate level, he has full speech funcion, has bladder/bowel control and has never had seizures which are all great things in the overall scope of Cerebral Palsy. But he is still a little boy having to deal with the frustrations of legs that wont work the way they should, the inability to participate or keep up with his peers, grazed and callused knees, legs and knuckles from crawling, pain and fatigue, the general ignorance and stupidity of mankind, hours of therapy each week and yes a sometimes cranky mum.

This blog will follow both our ABR journey and some of the highs and lows of living with Diplegia. I hope you enjoy it.