Meg Margaret Casley

Part time live in respite carer/ nanny required for single mum with 4 year old daughter with severe Cerebral Palsy.

2012-01-28T13:03:00.004+11:00

Includes quality fully furnished & equipped 2 Bedroom self contained upstairs accommodation in quiet bush setting on large property in Freeburgh (5 mins drive from Bright in NE Victoria)

Working Hours – generally up to 35 hours per fortnight with flexibility required for extra hours when necessary.

Role involves:

Providing social and emotional support.
Promoting independence.
Performing personal care.
Performing daily life and recreational tasks.
Assisting child to complete therapy exercises.
Providing respite.
Providing assistance for child to move around using assisted lifting, mobility aids and transport.
Following plans and keeping records.
Performing household and environmental maintenance tasks.

You will be prepared to be trained to perform all daily activities & communication skills required. This position requires collaboration, awareness and flexibility as well as tidiness and attention to detail.

Role will best suit an effective communicator, You will display initiative, integrity and a superior work ethic and – very importantly – relationship-building skills. You will be able to take direction and when necessary, work independently. You will value a clean and tidy living & work environment.

Requirements:

Drivers License and own vehicle.

Working with children check

Police check

Current Level 4 First aid certificate

Non smoker.

Offer:

Quality accommodation in 2 bedroom S.C upstairs furnished & equipped apartment including power, water & gas.

Wage of $350 per fortnight plus bonus for extra hours when required.

Will consider single parents with school aged children for this position.

Please email cover letter and C.V outlining all relevant details, please include contact details for at least 3 current referees to casleyke@bigpond.com

Selection Criteria and Job description for Carer/Nanny for Meg

You will have the degree of physical fitness necessary to safely perform manual handling tasks for Meg without risk of personal injury to yourself or others- particularly:

Pushing

Pulling

Stretching

Bending

Reaching

Carrying Squatting

You will have the ability to support Meg both at home and in the community in a way that enhances choice, dignity, and independence. The role includes:

Providing social and emotional support

Promoting independence

Performing personal care

Performing daily life and recreational tasks

Assisting Meg to complete therapy exercises

Providing respite

Providing assistance for Meg to move around using assisted lifting, mobility aids and transport

Following plans and keeping records

Performing household and environmental maintenance tasks.

You will be prepared to be trained to perform Meg’s daily activities. This position requires collaboration, awareness and flexibility as well as tidiness and attention to detail.

You are an effective communicator because you know how to listen and adapt your style.

You will display initiative, integrity and a superior work ethic and – very importantly – relationship-building skills. You will be able to take direction and, when necessary, work independently.

Care Responsibilities

To exercise a duty of care and accept responsibility for the care of Meg

To follow all medication schedules as specified

To be aware of all the care needs of Meg

To inform the family about any issues or concerns you have in regards to Meg’s care needs

To seek advice from Meg’s family about any concerns or difficulties encountered while caring for her

To maintain a safe and comfortable environment for Meg

To bring up at weekly review meetings, any communication problems you may be having with Meg’s family.

Flexibility is important as your work times will vary according to kindergarten holidays and Meg’s therapy sessions. You will work more hours during kindergarten holidays and breaks from therapy.

To Donate to MegAid Bendigo BankMegAid TrustBSB 633000Acct 137281846

Position still vacant

2012-01-28T05:10:00.000+11:00

Carer/Nanny for Disabled Child

Casual relief work $20-$25 per hour dep on exp. To assist with therapy and daily routine for Meg a 4yo with CP. Training provided.

A love of children, patience and a willingness to learn are essential.

Bright/Freeburgh location. Up to 12 hours per week flexible. Read Meg’s blog for duties & position description www.megcasley.blogspot.comWorking With Children Check requ.

Contact Margaret Hibbins 03 9429 2961/0411 087 815 hibbinsm@optusnet.com.au

Selection Criteria and Job description for Carer/Nanny for Meg

You will have the degree of physical fitness necessary to safely perform manual handling tasks for Meg without risk of personal injury to yourself or others- particularly:

Pushing

Pulling

Stretching

Bending

Reaching

Carrying Squatting

You will have the ability to support Meg both at home and in the community in a way that enhances choice, dignity, and independence. The role includes:

Providing social and emotional support

Promoting independence

Performing personal care

Performing daily life and recreational tasks

Assisting Meg to complete therapy exercises

Providing respite

Providing assistance for Meg to move around using assisted lifting, mobility aids and transport

Following plans and keeping records

Performing household and environmental maintenance tasks.

You will be prepared to be trained to perform Meg’s daily activities. This position requires collaboration, awareness and flexibility as well as tidiness and attention to detail.

You are an effective communicator because you know how to listen and adapt your style.

You will display initiative, integrity and a superior work ethic and – very importantly – relationship-building skills. You will be able to take direction and, when necessary, work independently.

Care Responsibilities

To exercise a duty of care and accept responsibility for the care of Meg

To follow all medication schedules as specified

To be aware of all the care needs of Meg

To inform the family about any issues or concerns you have in regards to Meg’s care needs

To seek advice from Meg’s family about any concerns or difficulties encountered while caring for her

To maintain a safe and comfortable environment for Meg

To bring up at weekly review meetings, any communication problems you may be having with Meg’s family.

Days & times required

Flexibility is important as your work times will vary according to kindergarten holidays and Meg’s therapy sessions. You will work more hours during kindergarten holidays and breaks from therapy.

You will need to be available to work on:

Tuesdays – PM

Wednesdays –all day

Thursdays – AM

To Donate to MegAid Bendigo BankMegAid TrustBSB 633000Acct 137281846

You can help, enjoy your wine and not spend any additional money or time doing it.

2012-01-18T11:10:00.008+11:00

Have a think about just what you spend each week purchasing wine.

A bottle here, a bottle there, pick one up when you are heading out for dinner, grab bottle of something to give as an easy birthday, Christmas, housewarming gift. Generally they cost between $10 - $20, how many a week would you buy? If I was being honest I would have to say at least 3, what about you?

Now if you would indulge me, have a think about where your $30 - $50 goes each week. A fair percentage goes to the supermarket / liquor store, the rest to the winemaker / grape grower, perhaps some to the transport company. A large majority of the wine sold at supermarkets is owned by hugeconglomerates and unless you only buy local wines your money leaves the region, often the country. Did you know that? Perhaps it didn’t even enter your realm of consciousness. Fair enough too, we all deserve a glass of something after a hard days / weeks work!

But what if our money could be used to help someone, we still get our bottle of wine; we still get to enjoy it with a girlfriend, over dinner or relaxing by the river.

Black Pearl rosé was made locally, using local grapes for a local girl called Meg Casley who has severe Cerebral Palsy. The award winning local wine maker gave her time to make the wine to help Meg, the Local grape growers gave their produce to help Meg, and the Local volunteers who pickedgrapes, bottled, labelled and boxed the wine gave their time to help Meg.

Could you help Meg by purchasing a box of 6 bottles? @ $15 a bottle you wont need to pop in at the bottle shop for 2 – 3 weeks, it’s money you would have spent anyway!

We offer free delivery in the Alpine region, Albury / Wodonga and Melbourne.

Please call or email me your order. casleyke@bigpond.com 0357501484.

For more info on Meg and this cause please go to www.megcasley.blogspot.com

Thanks for your time.

Kate

To Donate to MegAid Bendigo BankMegAid TrustBSB 633000Acct 137281846

Black Pearl sales

2012-01-15T20:43:00.001+11:00

Sold 2 doz Black Pearl Rosé at the Freeburgh Market this morning. Thanks to everyone who supported us by buying a bottle or 2! Anyone who wants to buy some to help support Meg, there is still plenty here. We are happy to deliver free in the Alpine Shire, Albury / Wodonga or in Melbourne. Call or email me your order! Or see us next Saturday at Make it Bake it Grow it in Bright.

To Donate to MegAid Bendigo BankMegAid TrustBSB 633000Acct 137281846

We love visitors

2012-01-13T09:41:00.003+11:00

We were very happy to receive visitors this week, Shane and Sierra who we attend CPEC and were doing hydro therapy with came up to Bright.

So happy to see the girls together. We didn't do much apart from our usual daily routines and it was the day it rained and rained and rained. We did manage a 2 hour bike ride with the girls on their specially modified bikes (we only got a little wet) The girls loved it, we visited cookie our horse and went down by the river.

Sierra and her family also went to Germany for stem cell therapy and fundraise to help purchase equipment / therapies for her - www.helpsierra.blogspot.com.

To Donate to MegAid Bendigo BankMegAid TrustBSB 633000Acct 137281846

Position Vacant

2012-01-06T21:09:00.001+11:00

Carer/Nanny for Disabled Child

Casual relief work $20-$25 per hour dep on exp. To assist with therapy and daily routine for Meg a 4yo with CP. Training provided.

A love of children, patience and a willingness to learn are essential.

Bright/Freeburgh location. Up to 12 hours per week flexible. Read Meg’s blog for duties & position description www.megcasley.blogspot.com Working With Children Check requ.

Contact Margaret Hibbins 03 9429 2961/0411 087 815 hibbinsm@optusnet.com.au

Selection Criteria and Job description for Carer/Nanny for Meg

You will have the degree of physical fitness necessary to safely perform manual handling tasks for Meg without risk of personal injury to yourself or others- particularly:

Pushing

Pulling

Stretching

Bending

Reaching

Carrying Squatting

You will have the ability to support Meg both at home and in the community in a way that enhances choice, dignity, and independence. The role includes:

Providing social and emotional support

Promoting independence

Performing personal care

Performing daily life and recreational tasks

Assisting Meg to complete therapy exercises

Providing respite

Providing assistance for Meg to move around using assisted lifting, mobility aids and transport

Following plans and keeping records

Performing household and environmental maintenance tasks.

You will be prepared to be trained to perform Meg’s daily activities. This position requires collaboration, awareness and flexibility as well as tidiness and attention to detail.

You are an effective communicator because you know how to listen and adapt your style.

You will display initiative, integrity and a superior work ethic and – very importantly – relationship-building skills. You will be able to take direction and, when necessary, work independently.

Care Responsibilities

To exercise a duty of care and accept responsibility for the care of Meg

To follow all medication schedules as specified

To be aware of all the care needs of Meg

To inform the family about any issues or concerns you have in regards to Meg’s care needs

To seek advice from Meg’s family about any concerns or difficulties encountered while caring for her

To maintain a safe and comfortable environment for Meg

To bring up at weekly review meetings, any communication problems you may be having with Meg’s family.

Days & times required

Flexibility is important as your work times will vary according to kindergarten holidays and Meg’s therapy sessions. You will work more hours during kindergarten holidays and breaks from therapy.

You will need to be available to work on:

Tuesdays – PM

Wednesdays –all day

Thursdays – AM

To Donate to MegAid Bendigo BankMegAid TrustBSB 633000Acct 137281846

Sleep glorious sleep!

2012-01-06T20:49:00.003+11:00

Hi all, here is an email written to Helen Stevens from Safe Sleep Space www.safesleepspace.com.au. I contacted her earlier in the year when someone had told me about this lady who was a whizz with kids with settling problems. I thought I would share it here because it is such BIG news!!!

Thanks for your support!!

Kate n Meg

Hi Helen, I am not sure if you remember us but we contacted you about 6 months ago. I live up near Bright N E Victoria and have a severely disabled daughter Meg almost 4 yo who has Cerebral Palsy.

You referred us to a sleep clinic. We never made it as things are just so overwhelming & hectic all the time. Anyway I just thought you would be interested to know that last week Meg (who is unable to communicate verbally) indicated that she wanted dad to leave the bedroom as he was trying to do her usual settling routine, (patting and singing) anyway she indicated using body language, pushing his hand away and he sat her up and asked her, do you want dad to go out so you can go to sleep by yourself? Meg answered with a big definate Nod! So dad left the room told Meg he would be right outside the door if she needed him. Meg went to sleep for the first time ever on her own - just like that! She has done it every night since, no grizzling, no crying - just tucked into bed with a kiss after a cuddle, there is a bit of snuffling and self settling and then off to sleep within 20 mins. We hadn't changed our settling routine much since we discussed the issues with you, we hadn't withdrawn our assistance - so I was completely blown away that Meg told us she was ready to do this. Anyway I thought you would be interested to hear about this as when we discussed Meg's sleeping issues I told you I was worried that I would be still singing and rocking Meg to sleep when she was 10 yo, I remember you saying that I probably would be unless we began to withdraw our assistance bit by bit. For me as a mum of this little amazing piece of humanity I am astounded by her all the time and really excited at the maturity that this little not quite 4 yo has shown us. all the best Kate Casley

And Helen's response, to lovely not to share!

Thank you Helen for your kind words. I have to admit they made me cry a little.

Dear Kate,
Of course I remember you, and fondly.... and of the struggles you were having. In all honesty I recall feeling how overwhelming your situation must be and how little assistance I was able to offer your family. I had wondered how you progresses.

I also recall my feelings of what an amazingly sensitive mother you were to your little Meg, and if any little girl will thrive it will be her, in the care of you and her dad.

Kate I am thrilled to hear from you and and even more reassured that YOU know your girl better than anyone, and will always be a wonderful advocate for her. This is a huge step for Meg in view of her dependence on having someone by her side to fall to sleep for all of her life. As parents, you have set Meg up so well to trust you that she is empowered to feel okay to do it for herself. What an amazing gift you have given her.

Thanks you for your update, and please keep in touch.
With kind regards and respect
Helen

--
*Helen Stevens*
RN, RM, MCHN, BA Sc, GD M.
Early Childhood Professional
SAFE SLEEP SPACE

To Donate to MegAid Bendigo BankMegAid TrustB

To Donate to MegAid Bendigo BankMegAid TrustBSB 633000Acct 137281846

Meg's Very own RDA - Riding for the disabled!

2011-12-06T05:56:00.004+11:00

Early this year we have been fortunate enough to find someone who has committed his time once a week to help us help Meg to get out of the house and spend some one on one time with horses. Adrian Webster who used to run the Freeburgh trail rides and is still in possession of some 50 horses, (once a horse owner always a horse owner) and luckily for us only lives about 2 mins drive away from our house agreed to see us on a Tuesday morning and spend a hour with Meg helping her get up close and personal with Cody the beautiful & quiet Palomino.

Meg adores this hour, and when I tell her we are going riding well she just beams with delight, nothing is too much trouble for her after that. One of her daily stretches is to have leg wraps on and sit in her corner chair meaning she stretches her hamstrings by sitting at 90 degs with straight legs. It is a hard stretch and she needs to do it for an hour each day to make sure her hamstrings don't permanently contract. You can imagine we have a bit of trouble getting her to do this happily and we have all sorts of carry on when we talk about it, but on a Tuesday morning - "not a problem" she happily has her leg wraps put on and no complaints for an entire hour. We tried to get involved with the official RDA in Myrtleford but the timing and distance made this impossible for us. Joan Meg's carer also comes along to assist as we need 3 people to enable us to do this safely with Meg, we also incorporate a heap of therapy & communication at each session and Meg get a great deal out of it. Adrian is a star for committing himself to this each week and we cant thank him enough, Meg gives him the biggest smiles every time she sees him. We are hoping to have a saddle specially made up to support Meg while riding, and we may even start Pony club in a couple of years.

Anyway here are the sequential pictures of Meg's own RDA (riding for the disabled) session. We hope you enjoy them.

Thanks again Adrian for your commitment and support this year!

To Donate to MegAid Bendigo BankMegAid TrustBSB 633000Acct 137281846

CPEC

2011-12-05T05:08:00.003+11:00

Hi Friends, well it has been a long time since I have given an update on Meg's blog, 9 months and things have been hectic.

Meg and I continue to travel to Melbourne most weeks to attend CPEC - Cerebral Palsy Education Centre. An amazing centre which offers therapy specialising in preschool kids with CP.

Their therapy is based on the premise that any child no matter how severe the disability can learn to communicate in some form and can also become an active participant in some way in their lives. Many people with severe disabilities very easily fall into the trap of becoming a passive participant where everything is done for them and as a result their quality of life is low because they need so much assistance to do anything.

In Meg's case, with her disability being so severe, she could very easily fall into the trap of being a passive participant, If we allow this to happen, in the future when she is too heavy to pick up and carry she will require either a hoist, or 2 people to assist in transferring her, in and out of bed, in and out of a wheelchair and on or off the toilet or into the car etc. Because of the time and effort involved in this it will mean she will be able to do less in her daily life and will probably spend more time just plonked in her chair in front of the telly.

It is why we work so hard now, while she is young to instill into our everyday lives Meg being as active in - transfers IE pushing through her legs to help stand up, getting in and out of her pusher, on and off the toilet, in and out of her feeding chair, in and out of bed etc. - sitting up IE using her hands, arms and body to assist her aid (me) to push up to sitting, There are many different ways in which Meg can help us to help her move around. Not only does it make the task easier for her carers but it is really good for her body and her brain to be learning these movement patterns and will as she gets older become instinctive. CPEC's philosophy is to instill this "therapy" into our daily lives, it means that tasks take a bit (or a lot) longer but it will mean the world to Meg when she is older. So apart for attending CPEC there is not "therapy time" for Meg our therapy is done every time she gets out of bed, every meal time when she had to lift up her hands to put the tray on her chair, every time she gets on or off the toilet etc.

The other side to CPEC is the extremely important communication angle. Right from when Meg began at CPEC when she was only 12 months old she has had a communication book, we have been encouraged, cajoled many times berated into instilling this into our every day lives.

CPEC does not believe in allowing their kids to sit in a corner and only get to communicate with their immediate family or by some one asking them questions, they very strongly believe in this and as a CPEC parent I also am expected to believe in this. It has not been easy, using the communication book is slow, it takes a long time to learn how and it is cumbersome to carry around. But like everything in Meg's life it is important, very important. Meg does not appear to have any cognitive issues, her disability seems only to effect her body. So her ability to communicate will be the way she will stop herself from going stark raving mad! Could you imagine the frustration of having all the time in the world to think about things or at her age now, going on for 4 years old and all those questions she wants to ask," but why mummy why". Without her communication book and as of last week her dynavox, (her communication book now on computer with voice output) she will be totally trapped in her body and her mind. So CPEC offer us that, they push and pull us parents kicking and screaming into the understanding that communication is the key, if our kids can communicate then they can be active participants not only in their home, but in the world around them and in their community.

So this year at CPEC has seen a massive change in Meg. For the first 2 years of heading off down the Hume with a 4 hours drive in front of us or a long train journey with delays or cancellations, packing up the house, making sure the bins were out before we left (you get the drift it was HARD work!) We would arrive at 9am at CPEC, pull into the parking lot and before we had even pulled into a parking space Meg would see where we were and start crying, the crying would turn into screaming as we entered the building, and usually when the first therapist would say Hi a full blown tantrum would take place. This happened week in and week out for nearly 2 years, she would generally start to smile when after 3 hours we got to eat lunch or definitely when we were singing the goodbye song!

Happily or possibly luckily, I did not have a nervous breakdown in these 2 years and things have improved significantly in Meg's 3rd year at CPEC. The therapists at CPEC were fantastic, calm, understanding and patient. They got Meg's communication book out consistently and asked her what was wrong again and again and again. Until finally Meg got it, these people were here to help, they wanted to hear her and they were interested in what she had to say.

It has been a miraculous change in her this year. Now when I tell her we are off to CPEC she smiles, she laughs when she gets there and enjoys the sessions, now she can even get through an entire session without crying.

So this Post goes out to CPEC to say a big thank you for all your help, we most certainly would not be where we are today down this long Rd if we had not stuck it out.

www.cpec.org.au for more information or to donate!

To Donate to MegAid Bendigo BankMegAid TrustBSB 633000Acct 137281846

Cooinda Camp was a blast

2011-03-30T10:42:00.006+11:00

We went on the Family camp at Lake Hume Resort with the wonderful team from Cooinda family support services last weekend. http://www.cooinda.org.au/ Want to send out a huge thanks to all the team there and all the people who volunteered to assist the families, the therapists who gave massages, mani/pedi's reiki etc etc etc the volunteers who fed us and all the local businesses who donated produce to do so. Needless to say the kids had a BLAST - A picture tells a thousand words -

To Donate to MegAid Bendigo BankMegAid TrustBSB 633000Acct 137281846

Stem Cells one year on

2011-03-18T06:25:00.003+11:00

Hi all, Just a quick note to fill you in on how Meg is going a year after treatment from stem cell therapy.

The biggest change we have noted is in her immune system. One year after treatment Meg has had nothing more than a slightly runny nose for a day or 2, Last week she had a slight temp and a sore ear, it lasted no more than 2 days. Amazing feat for a 3 year old who attends childcare 1 day a week and 2 days of therapy at C.P.E.C as well as a weekly swim in a public swimming pool..

It may not seem much to the scientists or the medical profession, to have had a neuroendoscopic stem cell transplant and the main result is a healthier child. However in Meg's life this is HUGE! It means we are not in and out of hospital, we are not on endless supplies of antibiotics, we can go every week to therapy - never missing a day through illness!! We can continue with all our many and varied activities all designed to give Meg the best chance to be the best she can be!

Her eye contact has continued to be fantastic also which Will hold her in good stead as she gets older and needs to be a part of the world and community around her. It is hard to imagine but we all do it, If a person is not looking at you when your speaking to you and doesn't or cant respond - even with a smile - we assume that they are not listening. It certainly isn't the case with people with cerebral palsy. The fact that Meg can look at people when they talk to her will help her immensely in her life and allow her to have more social contact.

No time for much more now but will try to add more detail to the update on the weekend

To Donate to MegAid Bendigo BankMegAid TrustBSB 633000Acct 137281846

Next years vintage of Black Pearl on its way

2011-03-18T06:23:00.001+11:00

Anyone with a free morning????? Grape picking starts today for next years vintage of Black Pearl Rose. 9am at Dalboscos Vineyard just up the Buckland valley Rd. Call El Anderson for details. The more the merrier.... and a glass or 2 of Black Pearl when we've finished.

Thanks for your support. Kate, Tom & Meg

To Donate to MegAid Bendigo BankMegAid TrustBSB 633000Acct 137281846

Our little valentine turned 3

2011-02-18T10:06:00.003+11:00

Meg turned 3 on valentines day this week. We had a lovely small gathering on Sunday. Also cake and party hats at Lyndhurst (childcare) with the staff and kids for her actual birthday!
Huge Big thanks to Sam & Leonie from Coral Lee in Bright who made her fantastic butterfly birthday cake which we all loved & to Gordanna for the delicious fritatta that fed all the adults!
Meg loves all her prezzies and the singing elephant from Terelle & Des bring squeals of delight, she also loves all the books, bubbles & jewelery.
Thanks to everyone who came along and all the calls from family and friends.
Personally I cant believe that 3 years has past! It has been the longest and yet the shortest 3 years of my life! If that makes any sense?
On the potty front Meg is continuing to wow us!
Thanks for all your continuing support.
Here's some picks from the big day!

To Donate to MegAid Bendigo BankMegAid TrustBSB 633000Acct 137281846

Calling all pregnant ladies!

2011-02-05T18:02:00.002+11:00

I was telling my neighbour Terelle last week that I have started acosting pregnant ladies in the supermarket, down the street & anywhere I see them really!
Why you might ask?
Well we have gone through our journey here with our try at adult stem cell therapy to help Meg's cerebral Palsy, and in as much that the changes we have seen in her since the therapy have been minor, they have all been improvements & no negative impact whatsoever.
All the while in our research into the therapy we have seen major advances using cord blood stem cells - a major study at Duke University in the US is having amazing results using cord blood.
If only I had known about the posibility of saving our cord blood while I was pregnant and what a saftey net it poses for your new child.
So the poor pregnant ladies being aproached by a stranger and being told to ask their Dr about saving their cord blood at the birth of their child is me, just trying to make sure people are aware of the posibilities.
Terelle said I should put it up on the blog site - so here it is.
I am not saying accost pregnant women in the supermarket, but if you know any pregnant women you care about ask them........ I wish some one had done so with me while I was pregnant.

Kate

To Donate to MegAid Bendigo BankMegAid TrustBSB 633000Acct 137281846

Veggies

2011-01-30T11:13:00.003+11:00

Meggie with a big pick from the garden this morning. She loved getting dirty with the carrots & tasting the beans!!

We Love our Garden !

To Donate to MegAid Bendigo BankMegAid TrustBSB 633000Acct 137281846

Meg's new bed

2011-01-28T15:28:00.003+11:00

Finally after 6 months on a waiting list Meg has her NEW bed!! Quite wizz bang - electric thinggy and she is such a big girl, last night she went to sleep without mummy having to rock her in her arms!! Big thanks to Des & Dave for comming to the rescue & putting it together for us last night.
K n M
xx

To Donate to MegAid Bendigo BankMegAid TrustBSB 633000Acct 137281846

Having a Whine sorry wine!!

2011-01-26T16:54:00.003+11:00

Sales of Black Pearl Rose have been tremendous since the wine launch in November last year.

So much so that we are nearing the last few doz of the box's. That's not to say that I haven't drunk my fair share. Well it's such a lovely summer wine, why not?? Even avid rose haters have been loured into enjoying a glass or 3!

Order now or miss out!

Email kate on casleyke@bigpond.com.au for delivery in the Bright area!

Don't forget Black Pearl is also available at The Alpine Visitors centre's Bright, Mt Beauty & Myrtleford. Also at Food Wine friends in Bright.

To Donate to MegAid Bendigo BankMegAid TrustBSB 633000Acct 137281846

Graz Austria comes to Melbourne Australia

2011-01-26T13:23:00.006+11:00

We were happy to make the trip to Melbourne yesterday to finally meet the 2 professors who helped us online wean Meg off her feeding tube!!

Prof Margeuritte Dunitz -Sheer & Prof Peter Sheer from University hospital Graz Austria who have spent the last 30 years or so dedicating their life to helping children with tube feeding dependancy.

About 50 families were there all with tube dependant children - a great turn up and we hope may show the powers that be that this problem is bigger than the medical profession likes to admit.

http://www.notube.at/ for more information on the Graz tube weaning clinic

Here are some pics of Meg enjoying the play picnic at the Parents session.

Anyone reading this who needs some support with tube weaning or the like can also get amazing support from a parent support site - http://www.tubefedkids.ning.com/ - there are hundreds of parents on here going through it and who have been through it who can offer support and advice.

Kate & Meg

To Donate to MegAid Bendigo BankMegAid TrustBSB 633000Acct 137281846

Direct deposit donations

2011-01-24T11:38:00.005+11:00

Thank you to everyone who has donated into Meg's trust fund in the last 6 months.
I was having a look at Meg's trust account today and was astounded to see all the generous donations from family, friends and others we don't even know who have donated money to help our little pearl.
I don't get much time to keep on top of things like this, but I wanted to make sure everyone who has donated has been thanked.

Here are the people who donated
G'Auntie Janice & G'Uncle Christie $500
Fight to win $50
Kerry Walder $50
Bright Hospital $10.05
Paula & Tarley $150
Evolve (Gareth Chandler) $200
Brook $30
Klinkerman $100
Grandpa Palmer $500
Nan $500
OShea Family $250
Uncle Sam $50
Jaqui & Jenni $50
Commonwealth bank Bright $200

Thanks again everyone - it means so much to us to have your support.

We hope your January is going well
Kate, Meg & Tom

To Donate to MegAid Bendigo BankMegAid TrustBSB 633000Acct 137281846

Surprise!!!!

2011-01-18T16:58:00.003+11:00

A wonderfull surprise came this morning from the B.U.M.S - Bright Untied Mens Shed. I called them last week to enquire if they might be able to help make us a ramp to help us get Meg in and out side.

Well less than a week later at 8.30 am this morning the guys arrived with a fantastic ramp for Meg ( see picture).

Just fantastic and saves us lifting her up and down the step.

Thanks so much to everyone at BUMS.....

We really appreciate the help.

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POO

2011-01-04T10:10:00.005+11:00

Ok, so some of you may find this a bit revolting!! BUT a proud mother is a proud mother and this is a BIG step in a little girls life!

Here is the result of Meg's 2nd attemt at the potty.

Am I proud or what!

Sorry if you were having breakfast! :-)

Kate xx

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Merry Christmas to all

2010-12-28T19:10:00.004+11:00

Here is some great pics of Meg's first ride on her new Tricycle on Christmas day. Thanks so much to everyone who donated to Megaid. This is our first equipment purchase from the trust and as you can see it brings so much Joy to a little girl.
She loved it so much that while I was adjusting the trike to fit her she cried everytime I took her off to adjust something. Finaly we had 20 mins riding around the back Yard at auntie Anna's house. Then a long walk / ride along the track to the park. She loved every minute of it and was totally worn out.
It's going to change our routine to fit in more outside time and more walks for everyone. A great thing all round.
Thanks again to everyone for the tremendous support and care that you have shown our family.

Kate, Tom n Meg
xx

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Wine Tastings Galore

2010-12-14T21:39:00.003+11:00

Black Pearl Rosé - Wine Tastings are happening all over town.
3.30pm - 4.30pm - Wednesday 15th December 2010 at Alpine Visitor Centre Bright.

2pm - 3pm - Wednesday 22nd December 2010 at Alpine Visitor Centre Myrtleford.

So if you haven't tasted the good drop yet - come on down and say Gday, pick up a bottle or 12! :-)

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Tins are still rattling

2010-12-14T21:36:00.002+11:00

Big thanks to Bright Chinese Restaurant who have filled a couple of MegAid Change tins for us now. The latest one brought in $285.

Thanks so much for your ongoing support

Kate

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Wine Launch a huge success

2010-12-02T06:26:00.004+11:00

About 100 people braved the weather & flood warnings to attend the Launch of Meg's wine - Black Pearl Rosé.

With entertainment kindly donated by Lee Rosser from Blank Vault productions http://www.blankvault.net/ Mayford winery was treated to some grooves to help the wine slide down.

A huge thanks to Pene, Janet & Megan who did a fantastic job helping Kate with the food, also to Lou & friends who took orders for over 40 doz on the night.

It was heart warming to see so many of our friends and neighbours getting out and supporting us.

Thanks to everyone for coming and trying this amazing wine. We have to remember, this is no ordinary wine drive! This is no $5 bottle of clean skin with a label put on it. This is a wine made by an award winning wine maker, especially for Meg! It's truly fantastic, a great summer drink and makes a wonderful Christmas gift.

So if you haven't got your orders in yet fax or email them to me soon

Thanks for caring Kate

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Black Pearl Rosé - Meg's wine to be launched this month

2010-11-18T14:43:00.003+11:00

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Thanks to everyone who supported Team Meg in the Melbourne Marathon

2010-11-18T13:52:00.000+11:00

Thanks to everyone who supported Team Meg in the Melbourne Marathon. We raised close to $2000 for C.P.E.C .

We realize that everyone is putting their hand out these days asking for support for this or that.
So with this in mind we appreciate every one's support that much more.

Meg, mum, Grandma, Uncle Sam & Great Auntie Robyn did the 4km walk - we came in 2nd last with nappy changes, lunch and mum carrying Meg nearly 1/2 the way! But how exciting to walk on to the MCG and cross the finishing line. It was certainly a great experience.

Big brother Tom and Auntie Anna completed the 5.7km run, Tom leaving Auntie for dead & doing it in 30 mins & 30 secs, he is so proud of his medal and this great Pic! Now Tom wants to compete every year and do the 10km run next year! Grandpa Peter did an amazing job - doing both the 10km run & the 5.7 km run.

Thanks to all the participants who came down from Bright & the Alpine Shire and competed in the 4km walk, the 5.7 km run, the 10km run & the half marathon! What an amazing show of support for Meg and our efforts to give her the absolute best start in life!

Thanks everyone - here is looking forward to next year!

If I put it in the Blog will any of you hold me to it???

Next year I am going to try to complete the 5.7 km run!!!!! If any of you know me and how unfit I am - this will be a pretty big achievement!
Best start training now! Anyone want to commit with me? I will need plenty of training partners to keep me motivated! Come on everyone ............

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Things are hotting up for summer

2010-11-18T10:56:00.004+11:00

Hi everyone, It's been a while since we have given you all an update on whats been happening.

This year has gone so quickly with our trip to Europe in March, intensive therapy sessions every week at CPEC in Melbourne, Meg is swimming once or twice a week which she loves. Plus our daily exercise/therapy routine which takes up most of our day.
So we have little time to update our Blog.

Meg has learnt to blow bubbles in the pool and is now holding her breath when we put her under the water. This has been a great thing for her eating and drinking as she is learning the art of keeping her mouth closed and breathing through her nose.

Meg has had a great winter with only a few sniffles and one cough which she handled very well with a small dose of antibiotics, her health is excellent and her cheeks rosy and plump with the brightest blue eyes you have ever seen. They have the cheekiest sparkle in them when she is being naughty or cheeky.

We have had a great 6 months with her weight finally going over the 11kg mark it is just shy of one year since we weaned her from her tube feeds, she still has her PEG (feeding button in her tummy) as it's quite handy to give her foul tasting medicines and if her fluid intake is a little down we can give her some extra while she sleeps. The PEG is not doing any harm and really has given us the best of both worlds with keeping Meg as healthy as we can. We will consider removing it once she consistently is drinking 500mls of fluid a day.
Meg's eating is outstanding, and she has quite an appetite these days - she is basically eating everything we eat - just pureed, she is even having the odd honey or vegemite sandwich which she enjoys but is very slow - so we keep up with the purees. Her absolute favorite thing is Mini magnums - which I try to limit to one every second day.

Meg has had difficulty this year tolerating her therapy and we have been working hard with the team at CPEC to overcome this with help from the child Psychologist . Despite our best efforts her progress remains slow. We are trying many different approaches to make her more comfortable in her therapy positions and many many adjustments to her orthotics etc.

The main difference we have seen since her stem cell therapy has been her ability to facial focus, I talked about this being one of the first things we noticed after her treatment. Meg now often stares lovingly into my eyes - which of course makes me cry every time!

The relaxation in the spasticity in her hands has also continued but not improved much.

Our next big hurdle is to get Meg actively stepping and even possibly walking in a walker. This is extremely difficult for her as she has what is known as fluctuating tone - so she goes from being extremely floppy to extremely stiff and she has to work extra hard to find the middle ground. It is so important for us to get Meg weight bearing as her left hip is more than 50% out and needs the weight bearing to form correctly, we are looking at surgery early in the new year to help with this in conjunction with Botox and Phenel to relieve the spacticity in her muscles.

That's about all I have time for today, please keep in touch.

Have more exciting fundraising news coming up!

Kate Meg & Tom
xx

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Walk don't run!

2010-08-25T14:01:00.001+10:00

Kate Casley For those who received my Melb Marathon fundrasing email yesterday - I'm not running the marathon, Meg & I will be doing the 4km walk! - Sorry to disapoint! - but no matter - sponsor us anyway! www.everydayheros.com.au/teammeg
http://www.everydayheros.com.au/teammeg
www.everydayheros.com.au

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Team Meg well on the way to target

2010-08-24T20:46:00.000+10:00

Thanks to those who donated today to Team meg! we have already raised $240 please go to the link http://www.everydayhero.com.au/team_meg to donate towards the wonderful cause CPEC.

I am trying to raise as much money as I can by entering in the 2010 St George Melbourne Marathon. Please click on this link to visit my fundraising page to find out all about it. Please dig deep to sponsor me. It only takes a few seconds.

Meg & I travel to CPEC (Cerebral Palsy Education Centre) every week for Meg's therapy! It's a 5 hour journey door to door from Bright in NE Victoria and we stay away from home for 3 nights a week so Meg can spend 2 mornings at CPEC in their world class specialist Cerebral Palsy clinic.

It really is the best in Australia! CPEC have government funding to the tune of $5000 per child that attends the clinic. This leaves a shortfall of $11,000.00 per child. It is through fundraising activities such as the Melbourne Marathon that mean that none of the families that attend the centre have to come up with $11,000 each year, when their lives have already been turned upside down with the news that their child has Cerebral Palsy and the implications financial & emotional that come with caring for a disabled child. Your support is invaluable and we hope that you will give generously.

Please spread the word and send this to as many people as possible.
Thank you very much.

You can visit my fundraising page at http://www.everydayhero.com.au/team_meg

Couple of facts –

· While CPEC are the official charity of the Melbourne Marathon, they do not receive a percentage of the runners/walkers registration fee. Our principal money from the event comes from supporters like you who raise money for us.
· This year it will cost nearly $1,700,000 to run our children’s education services. We only receive around $450,000 from the State Government. The rest of the money comes from our own fundraising and donations. The final short fall has to be met by parent fees.

Again thank you for making the effort to raise money to support nearly 100 kids who attend our world renowned education programs. It is your support that will ensure that we can continue to afford the programs and services for our babies and school aged children.

Thanks Herald Sun

2010-08-24T14:23:00.003+10:00

Thanks to the Herald Sun article a couple of weeks ago, we have had another $70 donated through the Meg Aid trust account. Thanks so much to the 2 anonymous donors for your support.
Heres a couple of recent pics taken by the fab photographer from Herald sun Jay Town - thanks Jay for forwarding them

Kate n Meg

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Something to share

2010-08-24T12:37:00.002+10:00

Who in my situation would not ask WHY ME?
This is a lovely piece I thought I'd share!

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Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen? Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.

"Armstrong, Beth; son; patron saint, Matthew.

"Forrest, Marjorie; daughter; patron saint, Cecelia.

"Rudledge, Carrie; twins; patron saint.... give her Gerard. He's used to profanity."

Finally, he passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one, God? She's so happy."

"Exactly," smiles God. "Could I give a handicapped child a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it. I watched her today. She has that feeling of self and independance. She'll have to teach the child to live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you."

God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness."

The angel gasps, "Selfishness? Is that a virtue?"

God nods. "If she can't seperate herself from the child occasionally, she'll never survive. Yes, there is a woman I will bless with a child less then perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word.' She will never consider a 'step' ordinary. When her child says 'Momma' for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations.

"I will permit her to see clearly the things I see --- ignorance, cruelty, prejudice --- and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."

"And what about her patron saint?" asks the angel, his pen poised in midair.

God smiles. "A mirror will suffice."

The Call is out for Team Meg Members

2010-07-22T19:30:00.000+10:00

Who’s looking for a great reason to get fit? We are putting the call out for team Meg in the Melbourne marathon this year! The date is 10th October and there are a number of different walks / runs you can do depending on your fitness level!

CPEC - Cerebral Palsy Education Centre is the main recipient of the fundraising from the marathon and this is where Meg gets all her therapy. It is an amazing facility offering such a wonderful hope for our girl and we need to get behind the fundraising efforts as there is a short fall of approx $12’000.00 per year, per child that attends the centre and is covered by fundraising efforts done by the centre, aiding all families who are not asked to cover the short fall themselves.

So the call is out! 3 months to train up! Please email me and let me know if you would like to be part of “Team Meg” at the Melbourne Marathon!
casleyke@bigpond.com

Looking forward to hearing from you all!

Kate, Meg n Tom
xxx

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Meg - 3 + months on

2010-07-12T18:14:00.004+10:00

Well it's been a while since I have updated Meg's blog. We have just finished school holidays and we begin our weekly trips to Melbourne tomorrow.
Meg has been extreemly well this winter, with only a sniffle early last month. This seems a common theme - I have spoken to a number of parents who's kids have undergone Stem Cell therapy. Immune systems seem to be boosted by the therapy with many parents stating that since S/C therapy they have not had a winter with frequent trips to hospital due to the various colds / flu / pneumonia. One parent has a 13 yo son - this is the first winter they have not had to take him to hospital.

All the gains we have seen since Meg's stem cell therapy have continued to advance in the last 3 months or so.
She is now making much more eye contact with us and the people around her.
Her communication skills are also improving with her head nodding and shaking (Yes / No) is very clear and we use her communication book to give her some say in what happens in her life.
Her hands remain less tight and she is using her hands a little more.

Another change which we had not mentioned previously was Megs leg length. Meg has for some time had quite a signifigant difference in her leg length, cause by the tightness in her abductor muscles pulling her left hip up making her left leg seem shorter than her right. Since the stem cell therapy and continuing Bowen Therapy her leg length has equalized.

We are due for another hip X-ray next month with the orthopaedic surgeon wanting to operate on Meg, our fingers are crossed that this may make a difference and Meg will not require surgery at this stage.

Other differences noticed,
- Meg holds her self up better - more tone in her trunk & is using her hands to support herself off your body when carrying.
- she is making many more noises and responding to games played and pretend play with noises.

On a sad note Meg's dad and I have separated.
It is a big journey for anyone having a disabled child - it is a steep learning curve and changes you irrevocably, unfortunately this has an enormous impact on relationships and from what I have read only 30% of relationships survive the ordeal.
I hope Jason will remain a big part of Meg's life and continue to offer her the support she needs.

Meg, Tom & I would like to thank our dear friends for your support over this emotional time, the people who have dropped over a few meals and Bev Miller for organising a donation of firewood for us to keep warm this winter, it is all very much appreciated. Even just the few who've dropped in for a cuppa and a chat, it means alot, thanks so much.

Kate

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Money tins still comming in

2010-05-27T11:14:00.003+10:00

Thanks to all those who have put their spare change into the MegAid tins, we still have a few coming in. A fantastic $285.75 from the Bright Chinese Restaurant & Harrietville store tins & $50 from the Bright Newsagency. Thanks to the stores who have allowed us to put tins on their counter. Also a big thanks to Bill & Ya at Sugunnya's Thai restaurant in Bright who donated $100 from my birthday dinner held there a couple of weeks ago!

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News

2010-05-26T13:01:00.002+10:00

Hi all - sorry I have not been updating the blog much lately. With our weekly trips to Melbourne for therapy at CPEC www.cpec.com.au , we are away 3 days a week and with the traveling and Meg's care - I just don't get time to get online.
We are having a rare treat of a week off CPEC and no trip to Melbourne this week so I have promised myself that I would write an update on Meg and her progress.
Firstly my last post talked about how I was looking forward to getting comments from Meg's therapists about any of the changes we have seen in her so far. Unfortunately Meg has been an absolute terror at CPEC since our return, her behaviour has made it hard to do anything with her. So, so far no comments.
We have started to use some techniques to get Meg to calm down during therapy which are beginning to work, I am not sure why she has such an aversion to therapy, I guess it is hard work for her and as much as we try to make it fun it is still hard and frustrating for her. She does most of the movements at home with no problem so we do believe it is just a behavioral problem and we will continue to work at it.
Anyway even though she is screaming blue murder during our therapy sessions, she continues to improve! There was a lull in her progress of any changes we were seeing and we thought oh well maybe that's all the changes we are going to see from the stem cell therapy, but in the last week or 2 Meg seems to have made another leap forward, her movements are more co-ordinated and she is doing more herself. I had my car keys in my mouth the other day rushing to head out the door and Meg was on my hip, she started to grab at them, (I say - just like a real baby) and what I mean is as you would expect a baby to do, Meg has never done this before, it ment she supported herself with one hand on my shoulder while independantly using her other hand to grab at the keys ( this is pretty big for Meg).
We are finding that the movements we ask her to make on a regular basis, arms up to get the tray on her feeding chair, or bum up to change her nappy etc, we don't even have to say the words any more - she just does them automatically. This is a big step forward to think that she couldn't even make these movements herself 6 months ago. So she can be taught to move her body which is a huge relief to me as her mother and carer as her quality of life will be so much better if she can learn to do things for herself, and my quality of life will also be much better also.
Meg has entered the terrible twos with a vengeance, she has a severe case of Mummyitis and I can not leave the room without a tantrum being thrown, it makes hard work for Joan Meg's carer or Grandma who is left with a screaming child but I take consolation in the fact that this is pretty normal behaviour for a 2 year old and am happy to see that she is acting like a normal 2 year old.
So all good news really, some therapists that haven't seen Meg in a while saw her in the last week or so and were amazed at how well she looked health wise, how her head control had improved, how chubby in the cheeks she is now she eats and how alert and interested in everything she is including her communication book.
Again I guess the medical profession would say these are all airy fairy improvements in Meg's condition and may have happened anyway without stem cell therapy, but to us as the people who will have to care for her for the rest of her life - we don't care, we have seen the reduction in spasticity in her hands and arms, Meg spends most of her time now with her hands open (only fisted when she is distressed) she is getting hold of her feeding spoon and getting it up to her mouth (not quite in her mouth yet but close) and this reduction in spasticity has resulted I believe in her increased abilities. I have also noticed that her leg length discrepancy (her left hip tilts due to tightness in her abductor muscles) which causes her left leg to appear shorter, has decreased. Meg also receives weekly Bowen therapy from our local wonder, healing woman Paula Hall which we hope may also help with this.

On the feeding front Meg continues to thrive, eating loads of food and we have finally reduced the night time fluids over the last 6 weeks since our return from Europe to nothing. We are now on the first week of one month with no using the PEG at all and then OUT IT COMES! - This will be a big day for Meg and the whole family.

Thanks again to everyone for all the support encoragement and love you have show our family over the last year

Kate, Meg, Jason & Tom

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Sarah Davis from Essendon - comment

2010-05-26T12:58:00.002+10:00

Hi Sarah - thanks for your contact. I am afraid I accidentaly deleted your details. If your still wanting to make contact please comment again or email me on casleyke@bigpond.com

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Home at last

2010-04-07T13:47:00.000+10:00

Hi all well we are home at last, Meg is suffering terribly from Jet Lag and has been awake from 12.30 & 1 am the last 2 mornings and then refuses to go back to sleep, so even though the rest of us seem able to sleep at night we are kept up caring for Meg.
I am sure it will all blow over in a week or so - we hope - fingers xxx!

Even with the incessant tiredness we are still noticing changes in Meg, the earlier small changes have continued to develop - on the way home in the plane I was reading her a story that involves pushing a button to make a noise, Meg loves this story and has done ever since she was 6 months old but she has never ever made any attempt at pushing the button herself before, we of course would help her to do it but she had never initiated it before. Well not only did she initiate the button push but she made her finger point to do so and kept it pointing throughout the entire story, she was not quite able to land on the target with the button but the fact that she tried and was obviously wanting to try was amazing, let alone making her finger point.

Her responses to questions are now much clearer and quicker and in some ways she seems to have matured a little, this may sound like an odd statement for a 2 yo but - Jason and I were both commenting on this the other day, she just seems to understand better and more complex concepts, questions etc, its a little hard to explain but it is something we had both noticed.

Her eating and drinking has improved dramatically, we were already on an upward trend with regards to this but I think the stem cells have certainly assisted.

She is making more noises, that are more complex and she makes them more often.

She is also getting very close to commando crawling on her tummy! Because we have been travelling we have not been able to give her much tummy time, but we have noticed a really big change in her - as much as she lets us know she is not happy about it her tummy time antics have really come on and she does manage to get herself from one side of the mat to the other these days without toppling over on to her back - which is what she would ALWAYS do prior to the SC treatment.

So all great progress, we are really looking forward to getting into some serious therapy with her next week once we have settled back into a routine and all had some sleep.
It has been quite frustrating not being able to devote the time to doing Meg's physio and daily program while we have been travelling as I can see she is really itching to make progress.

Last night when we were getting dressed in her Jarmies, one of our routines it for Meg to push up through her legs so I can pull up her pants - essentially making a bridge between her legs and shoulders, she has always enjoyed doing this but has struggled to get very high, the key is to ask her to do the exercise and let her initiate the movement then if she struggles I would assist. Well last night when I asked her to push through her legs she immediately (usually there would be quite a pause before the movement started) pushed herself up so high that I did not have to asset her or hold her bum up while I pulled up her pants, she was so pleased with her self, she even repeated the show when I called Big brother Tom to come and have a look at what she was doing.

Meg also continues to have some episodes where she will stare into my face, and look at me intently, as per my last post this is such a lovely change in her as it is very hard to connect to a person without eye contact and it has brought a new closeness to our relationship.

We begin back at CPEC next week and I am looking forward to seeing if any of the therapists notice any changes in Meg, It is a shame that we have all new therapists this year as some of them have only met Meg 3 - 4 times so far. Lynn carter the senior physio there has spent allot of time with Meg though so I hope she might spend some time with us over the next few weeks and give me her opinion.

I am afraid I am still plagued with the idea that the changes that we see are only because we so desperately want to see some change after the huge effort we have gone through to get Meg this treatment. It is certainly something that many of Meg's Drs have said to us with regards to anecdotal evidence from other parents and why this should not be used to base decisions on.
It would be nice to have some independent assessment of these changes to verify what we are seeing.

A note - I would like to put out there to all those who have questioned our decision to attempt this treatment, including many of our Drs who had suggested that the cost of treatment was exorbitant for the minimal likely change we might see.
These changes are not what I would call significant, they are small changes that at this stage make no improvement in Meg's level of disability, it is what these changes mean to Meg that is the important thing, She may remain a level 4 spastic quadriplegic cerebral palsy even after the treatment, but now she could be a level 4 spastic quadriplegic cerebral palsy who can point a finger and use a touch screen computer to communicate! These are the changes we were hoping to see, any small change that will help to improve Meg's quality of life living with a severe disability is worth any amount of money in my books.

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Small changes

2010-03-29T03:59:00.002+11:00

Hi all - well sorry to have been so quiet the last few days. We have been on the move and just never enough time to write and we have had very sketchy Internet access. Travelling with children - let alone special needs children is certainly and experience especially in a foreign country- we are all totally exhausted - we will all need a holiday from our holiday I think!
Today we landed in England, a slight change of plans, yesterday we were headed to Switzerland - things were going terribly wrong and Meg was not coping well so we decided we should head to an English speaking country for a bit and catch up with some of Jason's relatives.
So I know I am holding you all in suspense about these changes we have noticed with Meg - we really did not want to just spout on about changes that we so desperately wanted to see - anyway we are pretty confident now that we are definitely seeing some changes, - nothing major mind you but the spasticity in her hands has definitely decreased, one of the exercises we try to do with Meg daily is to hold her hand out flat with palm facing up - usually we would have to prise her fingers out and hold them quite firmly to be able to play the round and round the garden, well now constantly Meg can open and hold her own fingers out herself - this is quite a difference. In the all over scheme of things this is not a big change but we hope, as we have said all along that, only one small change may then grow as Meg develops new skills that she never would have been able to achieve, had she not had the stem cell therapy.

Meg is also making new sounds and her eye sight has improved. In all my wishes as a mother apart from having Meg eating and enjoying real food, the other wish was for her to look at my face, Meg has always had difficulty with this - I am not sure why but she has never stared at me intently, the other morning when I was feeding her breakfast and we were playing mum mum sound games, Meg just stared at me for about 30 seconds, into my eyes and at my mouth making the sounds and smiling and laughing. It was amazing to say the least, 30 seconds doesn't sound like much but believe me when your child has never really looked at you before 30 seconds was an eternity. She has not done it again since but I only hope that this will be the other big change in her, such a lovely way to interact and something I have missed.
Meg is also spending much more time on her stomach, something that she would have extreme difficulty in doing prior to the stem cells, as the tightness in her shoulders
would cause her to tip over, and it was uncomfortable for her so she would cry alot. Like I said she is spending more time happily on her stomach now and doing better with creeping and moving on her stomach also.
So - so far so good I guess, we would love to see more significant changes but It is difficult to continue with Meg's therapy when we are travelling - we are looking forward to getting home now and working with Meg more intently to see if we can turn some of these changes into real benefits for Meg and her future.

Thanks to all those who have emailed, sorry I just don't have time to reply individually but hopefully you will all get this news via the Blog.

love to all, we are back in OZ Easter Monday.

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Home from hospital

2010-03-20T06:03:00.003+11:00

We were discharged from XCell centre yesterday afternoon, after seeing the Dr in the morning - who said it was fine to go, Meg began vomitting then crashed out for 3 hours. So it took us the entire day to leave the place. Anyway she seems fine, we have been given some Vomex - for nausia and she seems fine with just this and neurofen or Panadol. She is certainly sensitive around the head area, if you pick her up too quickly or she bangs her head against you when your carrying her she lets you know it is hurting.

She slept like an angel last night from 7pm till 7am with only a short wake up during the night. Woke up looking her old self with good colour and no black rings under her eyes like she has had lately, ate really well and sat up in her chair playing happily while I fussed around the kitchen. Jason and I had bought a decent bottle of champers to celebrate, each night after we have got Meg to bed we have been so tired - opening a good bottle seemed too much for both of us, so this morning we had a champagne breakfast - the german bacon - kaiserfleisch - is really good and they have fantastic breads etc so - we had a cook up and a glass of bubbley with a deep sigh to be so happy that the whole thing is done and dusted and Meg seems to have pulled through so well.

We took Meg shopping for some warm winter gear today - the shopping here is great - and we will be comming back to some colder weather.

When Meg wakes from her nap we are off to the Old quater for lunch in a traditional brewery - with Ingo our long lost friend and translator extrodinaire to say thanks for all his help.

Tom comes back to Germany tomorrow with Kerry - I think he is ready now - sounds like he has been having a great time though, I miss him terribly but it was one hell of a week and certainly would have been more difficult with a bored 10yo in tow so I am happy that George and Kerry were able to help us out and give him a great holiday.

I was thinking this morning that only 7 days ago I was off to Frankfurt airport with Tom - this really has been the longest and the shortest week I have ever experienced.

Well thats about it for now.

thanks for all your love and support

Kate Jason Meg & Tom

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24 Hrs after surgery - so far so good

2010-03-18T23:52:00.006+11:00

Well it just over 24 hrs since Megs neuroendoscopy, so far so good. No changes to be noticed so far - but it is early days yet. I think the only things we have noticed are in our own minds - wishfull thinking, we are just so surprised at how well she is doing. Really the only BAD bit was when she first woke from surgery, she really hit the roof for an hour or so - but we have seen this with Meg before after comming out from a general anasthetic, it is called emergence delerium so we had thought this may happen anyway and were prepared. After a short sleep she woke up smiling and happy and sat up on mum or dads lap and watched DVD's all afternoon - grazing on food for most of the day. We are lucky she has not been sick at all as yet and still has quite a good appetite.
We had a broken nights sleep last night - Meg slept soundly from 6pm till about 1am - then was awake ane ready to play til 4am - no number of lullabies would get her back to sleep. This again is pretty normal behaviour according to Meg's neurosurgeon Dr Tamascke. So all in all she is a textbook case, there was no bleeding on the brain during surgery and the Dr was extreemly pleased with how things went. She introduced over 8 million stem cells into Megs brain liquor spaces, This was also a really positive thing, Each person has an indervidual number of stem cells extracted the norm is between 2 - 5 million - but Meg had an unusually large number so this will all work to her favor.
So now is just a waiting game, we are here at the Xcell centre for another night or 2 depending on when the Dr's are happy for us to leave. And the rest is up to Meg - will it or won't it work?? Fingers crossed from our end it is a bit of a lottery but we have put our best in and thats is all we can do now.
We continue with Meg's therapy as best we can, we have been lucky with getting equipment over here and have a few things on loan, although it's been very hard to find the time.

So today e have our first spring weather day and as Meg has refused to have her afternoon sleep twice now we will take in some fresh air with a walk along the Rhine.

will keep you all updated

all the best
Kate

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Tune in to Channel 7 tomorrow night 18th March

2010-03-17T18:51:00.002+11:00

Channe 7 news is doing another piece on meg from over here - should be aired tomorrow night 18th march - Tune in!
wish us luck we are leaving soon.

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Neuroendoscopic stem cell transplant it is!

2010-03-17T06:50:00.003+11:00

Well we had Meg's MRI today, she was an angel right through.
What a little trooper, 2 General anasthetics in 2 days, and 1 more yet to come!
After the MRI we went back to the Xcell centre to see Dr Tamascke the Paediatric neurosurgeon who is looking after Meg. After much discussion she decreed that Meg's MRI looked typical of a child with her level of disability from a hypoxic (oxygen deprivation) event such as the one which happened during Meg's birth, she said that her brain looked symetrical with no obvious abnormalities in the right or left spheres, rather it showed an enlargement of the cerebral liquor spaces within the brain, a sign she thought that Meg was an ideal candidate for the Neuroendoscopic Stem Cell transplant proceedure as there was plenty of room to implant the stem cells right into the liquor spaces in Meg's brain. She was confident that by providing the stem cells right at the Basal Ganglia, (brain stem) that many of Meg's feeding swallowing and head control issues would see a vast improvement, and the belief is that with improvements in these base areas that as Meg grows and develops that she would then continue to develop in a more normal pattern. if you think of a new born baby whos first natural reaction is to feed, it learns very quickly to breath through it's nose as it feeds, learns to swallow without coughing etc etc, all things that Meg still struggles with, if we can improve these primal basic motor functions, we hope that it will inturn aid in the development of all her motor functions as a healthy (not brain damaged) child would.
Well we can only hope now, we have put our faith and hope with the Dr's at the XCell Centre and I am sure it is going to be a really hard week, We can expect Meg to be quite irritable and probably be off her feeds and have her normal bio rhythms upset. Wake & sleep cycles upset also.
Jason and I will both stay with her, we have a suite and for a little more we both can stay. We expect to be in the hospital for 3 - 4 nights.
So please everyone cross all your fingers and toes, pray to whom ever you believe in and send as much positive energy our way at 11am - 12pm German time tommorow, Meg needs all the help she can get to get through this and make it work.
We love and appreciate that so many people are following Meg's Blog, we are strong believers in positve thought and energy and hope that you will all give a little for Meg tomorrow.

Thanks again for all your love and support.

I am not sure when we will be able to update Meg's blog in the comming days but I will certainly let everyone know as soon as I can how it all went.

Ps, we met a family from Indonesia today at the MRI who had been told about Meg's blog some time ago and after reading it had then decided to come to Germany with their autistic daughter, I am happy that we might inspire, and hope we can help others in anyway we can.

Check out this latest NBC footage of Dominic & Harrison from the states - it is inspiring to say the least -
http://www.xcell-center.com/news/dominic-king-and-harrison-spiers-nbc.aspx

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Stem Cell extraction went well

2010-03-16T05:57:00.003+11:00

To all those waiting in antisipation for news of how things went today, I am happy to report that all went extreemly well. Meg and Jason went into the theatre - He said she was a good little girl while they put the IV line in and only grizzled when they put the mask on her face.
The XCell centre is quite a facility the hospital it is based in is an old one but the floors that the XCell centre occupy have been completely refurbished and provide an extreemly modern and up to date facility.
We met another Aussie family in the waiting room with their 13yo CP son Michael who will undergo the lumbar puncture on wedesday, we all agreed that the Consultant we have been dealing with (the sales man who covers Australia) is quite useless and does not follow through on any details with the families.
Meg was out of theatre in about 20 mins and was aready waking up as they were wheeling her out, we went up to recovery with her and she was smiling as i was singing her favorite songs. Once fully awake she devoured nearly a while bottle of milk and within an hour we were being taken off to see the consultant about what exercises we should be doing with Meg to increase the stimulation in the areas of the brain that will aid the stem cells to find the right spots to repair.
Funnily enough it all centered around oral stimulation - it is stuff we are doing already, with just a few refinements we are on the right track which is heartening.
Home after the consult and Meg slept for 2 hours, we had a lovely walk and did some shopping, Megs back where the stem cell extraction took place is fine, you can hardly see the punctures and asolutely no bruising.
So tomorrow is the MRI and unfortunately another General anasthetic, we will see the Dr post this and discuss our final decission about which procedure to go with.

Stay tuned for the next episode

Kate

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Day one - Stem cell extraction

2010-03-15T15:45:00.002+11:00

We have arisen early to feed Meg via the Peg while she sleeps as she cant have any breakfast today. We have to be at the XCell center by 9am for the bone marrow extraction.
All on tenter hooks here, its going to be a nerve racking week.
Will keep you all updated.
Tom happily entrenched in Greece - had a great trip over with him. he is becomeing quite the seasoned little traveller and had the hosties eatting out of his hands, comming off the plane with more games, & toys than I had ever seen.
He had a great beginging to his visit going off to Georges family for sunday lunch for some special festival day where they eat smoked cod (I think he had spagehetti)
Kerry & George took us out to a fantastic restaurant when we arrived and had all the famous Greek dishes - up on a mountainside in a funny quaint little restaurant, It was lovely.
A long trip back to Dusseldorf, It was a funny feeling taking off and leaving Tom in Greece - splitting up the family like this - I know he will have a much better time over there but it didnt make it any less difficult.

Ok well will keep you updated as i get a chance.

thanks for your love & Support

Kate n Co
xx

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Here we are In Dusseldorf

2010-03-13T15:19:00.004+11:00

Hi everyone, well here we are in Dusseldorf.
We are settling in an getting used to the cold over here, even though it is spring it is bitterly cold.
The jetlag has also been difficult especially for the kids to adjust to, they are both still waking during the night.
We have been extreemly busy seeing Dr's and Physiotherapists, getting equipment for Meg to use while we are here. We have found a really lovely Physio - Claudia who has been an amazing help with getting a standing frame for meg to use while we are here, she is a really lovely lady and had offered to take Tom iceskating while we are here as she too has a 10yo boy, she will also try to arrange for Tom to atttend a day at a German School with her son so he can experience the difference.
We had an amazing stroke of luck with thanks to the News coverage of our departure. An old friend of mine Janine saw the Tv coverage and got intouch via email from meg's Blog. I was the bridesmaid at her wedding 25 years ago and we had lost contact for the last 15 years or so. Anyway the last time I was in Dusseldorf (20 years ago) was to visit them as they were living here at the time, it turns out that Janine & Ingo have split up and Ingo is still right here in Dusseldorf. We caught up and he said he would come to the appointment with us at the Xcell center to translate for us. Very luckily for us as Dr Tamascke - the paediatric neurosurgeon's English was quite poor and we had many indepth questions to ask.
Another amazing coincidence was that we bumped into Kerr Graham from RCH Melbourne (Meg's Orthopaedic surgeon) while in transit in singapore, he had just been to the Cerebral palsy conference in NZ and was on his way to London to give a lecture, anyway he was saying that the Stem cell trials going ahead in America were comming up with quite remarkable results. It seems Kismit is on our side with this trip.
So back to the Xcell center - our appointment went for some time as you could imagine but was extreemly fruitfull, we both are erring on the side of the endoscopic procedure now, although it was decided that to make a more informed decission that Meg needs a new MRI as the last one was done at only 5 days of age.
So the plan is at this stage to have the stem cells extracted on monday morning, have the MRI on Tuesday, following this see the Dr again and discuss the MRI findings. We will make the final decission on which procedure to go with following this appointment.
In the mean time I am taking Tom over to Greece today to stay with a girlfriend for the week as I think he has been pretty brilliant and such a big help with meg all week, but next week is going to be extreemly intense and I think he will have a great time with Kerry and her 2 boys Zac & Jacob who are around the same age.

will fill you in more next week

thanks for your interest and support

all our love
Kate Jason Tom & Meg
xx

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Thanks to Jennifer

2010-03-06T10:31:00.002+11:00

Thanks so much to Jennifer from Scotland (cousin of Joan Harrison - Meg's carer) who got home from her visit to OZ and found $70 AU in her bag still - she sent it back Via Joan to donate to the MegAid trust.
Thanks Jennifer for you kindness.

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Wet weather grape picking

2010-02-27T12:34:00.002+11:00

Just wanted to thank all those who turned out today to pick grapes at Ringer Reef Winery - about 15 people braved the wild thunderstorm and we managed to pick about 140 buckets before calling it a wet weather day!
It was lovely chatting amongst the vines and the beautiful merlot grapes donated by Ringer Reef were in abundance.
Eleana Anderson from Mayford wines next door was cranking up the grape crush to get the wine started as we left, she already has last weeks pick fermenting! It's all very exciting - we expect the wine to be bottled in September and available for purchase in November 2010. If you would like to pre order Meg's Black Pearl rose please email me casleyke@bigpond.com - the wine will sell for $15 per bottle or $170 per dozen.
Another picking morning has been called to pick the last 70 or so buckets required on wednrsday 3rd march 2010 at 9am at Ringer Reef Winery Porepunkah any available volunteers would be welcome.

Keep an eye out for the local paper this week!

Thanks again fellow pickers.

Kate

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Cat's out of the bag!

2010-02-22T22:50:00.002+11:00

I hadn't mentioned Minister Tim Holding, and his teams work in assisting with our request to Qantas for our airfares to Germany for Meg's Stem cell therapy because the Minister had not wanted to make a big deal out of it. But for those of you who saw Channel Seven News tonight you would know that the cat is out of the bag!

So now I would publicly like to thank Minister Holding, Vicki, Luke & Steve, all of whom I met at Minister Holding's thank you BBQ held at our venue last year for taking the time to talk, listen and help us in our endeavours to offer Meg the best opportunities in her life time.

It was a very kind thought and we appreciate your on going interest in our battles and our triumphs - we look forward to keeping you up to date with our next stage - Stem Cell treatment!

all our Best wishes

Kate, Jason, Tom & Meg

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Big thanks to Ringer Reef winery Porepunkah

2010-02-22T22:10:00.004+11:00

Bruce & Annett from Ringer Reef winery in Porepunkah - near Bright

www.ringerreef.com.au are generously going to donate some of the Grapes for Meg's Rose this year.

For those who don't know my dear friend Elena Anderson from Mayford wines in Porepunkah www.mayfordwines.com.au. has offered to make Meg 100 doz bottles of Rose to be named "Black pearl" (read back in the blog for the Black Pearl story) each year as an annual fundraiser to help support Meg's ongoing equipment and therapy needs.

The costs to produce the wine were going to come out first, then any profits donated to the MegAid trust. The donation of Grapes means our wine production costs will be substantially reduced.

Along with this, last week a group of local mums got together to actually pick some of the grapes for Meg from Eleana's vineyard, again substantially reducing the production costs for Meg's rose "Black Pearl".

I am so overwhelmed with the generosity and kindness from my community, friends and aquaintances. I cant thank any of you enough, not only for what you are actually doing physically to help and and assist our family, but for the way my heart feels when I am told of yet another amazingly kind and generous offer. It certainly eases our burden knowing that you are all out there doing as much as you can to help our family out, for that I thank you from the bottom of my heart.

We will be looking for volunteers to pick the grapes from Ringer Reef soon, anyone who would like to come along for a few hours to chat, laugh & pick you would be most welcome. Please contact me on 0427003125 if you might be able to help.

Kate

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Hi to all the channel 7 national news viewers

2010-02-22T22:00:00.002+11:00

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Welcome to Meg's Blog all the viewers from Channel Seven National News.

To make it easier for you to navigate this site, please use the navigation bar on the right hand side of the page. Most of the information about Meg, her disability, our plans for her future, the Stem Cell therapy that we are raising funds for are are located in the earlier posts. We use this blog to keep interested people up to date with Meg's progress and to thank all the fabulous people & businesses who have donated to the MegAid trust.

We have raised enough money to get the Germany for our first round of Stem Cell treatment. However our fundraising effort continues as Meg's equipment needs continue to grow, should this treatment prove successfull we may need to return for further treatments, if you would like to donate to the MegAid trust please use the details below.

Thank you for your interest.

The Casley Family.

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Thanks to Christine Cabone

2010-02-21T19:09:00.002+11:00

A lovely surprise when logging in to the MegAid trust account to see a fantastic donation from Christine Carbone (I am not sure who you are Christine) but wish to thank you warmly for your extreemly generous donation of $500.

Only 2 weeks now till we head off to Germany, loads to do and not enough time to do it in. Meg starts back at CPEC this week - we were happy to see that little Sierra Hill (from www.helpsierra.blogspot.com) who has had 2 lots of Stem Cell treatment will be in the same group as us this year.
I am looking forward to getting to know the family better and asking lots of questions.

Meg continues to eat well and even put on 50g since her last weigh in this week, a fantastic effort - we are so proud of our little girl.

I hope to keep you all updated with pur progress while we are away in Germany, so stay tuned.

We hope to buy Meg a specialized stroller whilst in Germany as she is quite unhappy in the one provided to us from the early intervention team - we have been putting up with it for more than a year now.
As the manuafacturer of the one we like is based in Germany, we hope to make quite a saving by buying it whilst over there.

Thanks again Christine, we really appreciate the support we have received so far, it is all of you who have helped with this massive effort that has made this trip a reality for Meg and our family. We couldnt have done it without you and want you all to know from the bottom of our hearts we thankyou all so very much.

Dont forget to spread the word about www.stemcellroundtable.ning.com I have some news from other families who have just had treatment at the Xcell center last week.

Oh and tune in to Channel 7 news this Monday night - they are doing a story on Meg and our trip

all the best
Kate, Meg & Family

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Birthday Girl - on Feb 14

2010-02-17T08:00:00.002+11:00

Our little love angel turned 2 on Valentines day.

Thanks to everyone who donated her birthday present to MegAid - we put another $385 into the trust account to help with Meg's future needs.

Thanks so much everyone who resisted buying Meg a birthday present, putting money into her trust is so much more beneficial as we can use the money to purchase things that are really needed. For example one of her switch toys (specially adapted for disabled use) costs around $200 - 500, not something we as a family can afford to purchase regularly, and she gets bored with them quickly, with the help of the MegAid trust Meg won't miss out on the joy of successfully using her toys.

With the help of the Cerebral Palsy Support Network by way of a $500 grant and Meg's nan.
Meg was given a fully supportive swing for Christmas, the swing cost close to $1000 - the joy on Meg's face when she swings is priceless really, it is wonderfull to be able to give her the same experiences and fun that other kids have, so big hugs and kisses to Nan & a huge thanks to CPSN who run a wonderfull service by offering these grants and help mum to employ Joan Meg's favorite person & carer.

2.5 weeks till take off and counting..... will keep you all informed of our progress.
Keep an ear out too - Channel 7 News will be doing a piece on Meg's stem cell therapy, more details soon.

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New discussion group set up

2010-02-12T12:57:00.002+11:00

Hi all - I have had a few people contact me lately through the blog as they too are heading to Germany with their loved ones to try Stem Cell therapy.

We have been lucky enough to actually meet some parents of CP kids who have been and tried the procedure at the XCell center which has given us much needed reassurance and alot of very useful information on the clinic and side effects etc.

So in response to this I have started up a ning group to try and connect all of us parents going through the same thing - www.stemcellroundtable.ning.com
I think it is best that we don't each of us individually try to reinvent the wheel. Researching this sort of procedure is extremely time consuming and confusing, we all go off in our own directions and get Dr's advice and talk to all sorts of different people, I have set this group up to try and bring all that knowledge, information and experience together to help others with their journey.

I hope you might have a look at the group and pass it on to anyone you think might gain something out of it or have something useful to share.

Thanks again everyone.

Kate

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Long over due update

2010-01-31T21:10:00.002+11:00

Thanks to all those people following Meg's blog. Its been a long 2 months since our last update. After our massive fund raising effort in Nov - then straight into Meg's tube wean at RCH Melbourne in Dec, we all fell in a bit of a heap at Christmas, Meg has taken a long time to get used to eating all her food orally and has been quite a handful while this new way of life has settled in. I am happy to report a healthy appetite with a petulance for sweets, especially chocolate mousse which she will eat a whole tub at a time.
Now she seems to be on a constant with her weight (she is maintaining at the moment - a great achievement - we hope to see gains in another few months) My new agenda (among other things) is her nutrition. So I am doing a lot of research about the best nutrition for Meg (Cerebral Palsy sufferers apparently have different nutritional needs than you and I, I have recently discovered) Well it's all about keeping her healthy as possible and giving her brain as much energy as it needs to help it create new neural pathways to help Meg gain additional motor function, as well as keeping her as healthy as possible before we head off to Germany in early March for her Stem Cell treatment.

Yes we have a date set for her treatment on 15th March - we plan to stay in Dusseldorf for 2 weeks, arriving a week early to have an appointment with the paediatric Neurosurgeon who will perform the procedure and allowing Meg enough time to recover fully after the procedure before we do a bit of sight seeing.
Tom Meg's big brother turns 10 on the plane ride home so we plan to take him to Euro Disney as an early birthday present before we return home.

We now have 2 options for the stem cell treatment, the first is the least invasive - stem cell transfusion via lumbar puncture. The X Cell center has been doing this for 3 years and has done well over 2000 treatments and to date with no negative reactions. The 2nd is called a neuroendoscopic autogenous stem cell transplant. This is quite new, to offer this - the XCell center has only been doing the procedure for 6 months. It is where they will inject Meg's stem cells into the cerebral liquor of Megs brain. It is certainly more invasive than the lumbar puncture and requires a 3 - 4 day stay in hospital all going well and is quite alot more expensive. Luckily due the overwhelming fundraising responce from you all we are in a financial position to consider either option.
We are not planning to decide which option to take until we have met with the X Cell center Neurosurgeon and had all our questions answered.

If anyone knows someone who may be able to translate at this appointment for us please let us know - the appointment will be in Dusseldorf on the 12th March at 9am. Our Email address is casleyke@bigpond.com.

On another note a more disappointing one, We had a serious discussion with the orthopaedic surgeon at RCH Melb this week. It seems Meg's hips will require surgery sooner rather than later, they are proposing a left tendon abductor release as the spasticity in her left leg is pulling her leg in and her left hip is not forming correctly.
Another big reason to get over to Germany and fingers crossed that the stem cells work enough to reduce the spasticity in this area at least. The orthopaedic surgeon believes this will be the first of many such operations. Not a great prospect, and just as Meg has really made such huge gains in her development since she began eating, we are now really hoping that we get a great result from the stem cell treatment.

Thanks to everyone for all your support with our journey so far - we are looking forward to a great 2nd Birthday party for Meg on the 14th Feb - (Marshmallow cake a favorite )

Kate, Jason, Tom & Meg

xxx

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Belated thanks to Craig & Felicity

2010-01-31T21:06:00.002+11:00

A Very belated thanks to Craig & Felicity who donated $300 to the MegAid trust. Thank you very much Guys it's never too late - we will be raising funds for a long time to come. Meg's equipment needs will be on going for the rest of her life, so all donations are very gratefully received.

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Meg's doing great

2010-01-12T13:24:00.002+11:00

Here's some pics of Meg enjoying breakfast yesterday.

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Myrtleford Lodge donates

2009-12-21T07:55:00.003+11:00

Rhonda & Barry Forster from the VMMA - Bright have done it again!
Rhonda has been busy pushing the barrow for our little Meg, she has already arranged for $1000 in donations from VMMA & Bright Masons, now she has secured another donation from Myrtleford Masonic Lodge of $150.

Thanks Rhonda & thank you Myrtelford Lodge your donation is very much appreciated

This brings our running fundraising total to $55,850.00

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Thanks to my Family for going without Presents this year

2009-12-18T11:23:00.002+11:00

Thanks to Nan, Grandma & Grandpa Peter, Grandpa Palmer & my cousins, Ethan, Arwen, Reo, Libby & Eddie, my Aunts and uncles, Faith, Geoff, Anna, Simon, Gina, Simon & Sam for going without christmas gifts from our family this year. Mum & dad have put the money they would normally spend on presents into my MegAid trust account with their name on it for my future! We have raised $370 by doing this.
Lots and lots of Christmas Cheer to my wonderful family.

With lots of Love
Meg
xx

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Harritville Primary School donate $500!

2009-12-16T20:44:00.003+11:00

Joan, Meg's respite carer and mother of a Harietteville Primary school boy Douglas - brought a cheque for $500 from the school to donate to the MegAid trust today!

I am so totaly overwhelmed with the support we have received - the families of the Little Primary school tucked up right at the end of the Ovens Valley with under 40 students do so much fundraising for their school it just means so much that they would donate some of their hard earned fundraising to our Meg.

Thankyou so much, we are truly gratefull.

This Brings our fundraising efforts to $55,700.00

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Eating is working

2009-12-15T11:33:00.002+11:00

Just such fabulous news this morning I had to share it - Meg is being closely monitored for her weight as she is only just 3 weeks since she has had her last Peg feed - today she gained 120g all through eating through her mouth! The norm after being tube weaned is no weight gains for 3 - 4 months.
We are so thrilled with Meg she is eating with gusto and seems to enjoy every mouthfull.
Its such a heart warming thing for me as a mother and a chef - one of the hardest things I had to come to terms with was not being able to nourish my child so it is an extra special christmas present for me to have my girl eating!

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WOW - What a result

2009-12-14T19:14:00.002+11:00

It has taken me a while to establish the exact amount we have raised for the MegAid trust since starting the fundraising effort last May. I have finaly had time to sit down and work it all out.

Including the amazing donation from Qantas in providing us with 4 return tickets to Europe early next year valued at approx $7000.

We have raised as of today the most amazing amount of - $55,200.00

I have said before and i will keep saying it - to my friends, family, complete strangers and our community THANKYOU THANKYOU THANKYOU!!! We most certainly could not have done it without your hard work, efforts, love & support.

We wish you all a very Merry Christmas & a Happy New Year

With all our love

the Casley's

To Donate to MegAid
Bendigo Bank
MegAid Trust
BSB 633000
Acct 137281846

Banks surprise

2009-12-14T19:01:00.002+11:00

I was at the Bendigo bank today depositing the coins from the MegAid tins that have been in some of our local shops - $420 worth I might add - a great addition to our fundrasing efforts - Thanks everyone for your small change.
Carmel Smith while at the teller handed over the counter a $50 donation to the MegAid trust - fundrasing effort. Thanks Carmel & Adrian Smith (Smith's tyre & Battery service) for the off the cuff donation - people continue to support our cause and we cant thank the community enough.

To Donate to MegAid
Bendigo Bank
MegAid Trust
BSB 633000
Acct 137281846

Flower Power creates a BUZZ!

2009-12-13T17:49:00.008+11:00

On Friday 11th Dec - Flower power for Meg was held at the Bright Footy Clubrooms - Lisa Bishop a renowned local Artist gave her time to teach us girls a thing or two about painting flowers.

The group of 19 Local Bright Women, most had never painted anything more than a wall before were amazed at how easy it was to create ART!

A fabulous day was had by all - with the help of a few bubbles to get the creative juices flowing.

The Day was organised by the wonderful Lou Pullar of Alpine Style Magazine fame who arranged the entire thing - Lunch - champers - the paint and Canvas's and the lovely Lisa to guide us through.

I have since found out that Lisa's Husband was diagnosed with a brain Tumor a few weeks ago. So our extra special thanks goes out to Lisa and her lovely girls for making time for Meg in what is a really difficult time for all of you.

Please Lisa if we can reciprocate with any help what so ever to ease your burden, don't hesitate to ask. I have recently found out what an amazing & supportive community we live in here in the North East of Victoria. If you need help just ask, We are there!

$657.50 was raised for the MegAid trust

A big thanks to Dahlsens Myrtleford for the donation of 3 huge tins of paint & all the girls who brought along plates of lovely food for us all to share for lunch.

I believe the next painting day will be Chook power how to paint Chooks - I hope more people will come along next time.

To Donate to MegAid
Bendigo Bank
MegAid Trust
BSB 633000
Acct 137281846

AMAZING NEWS!

2009-12-07T09:47:00.003+11:00

Talk about amazing news - I received a phone call this morning letting me know that - Qantas have donated all our return economy airfares to Europe! - that's about $7000 worth of airfares! - Totally amazing and we are so incredibly grateful to Qantas for their generosity!
We are certainly on our way and are now just waiting for a treatment date in Germany before we book our flights.

Thanks so much Qantas - quite quite incredible, what a christmas present to Meg and all of us!

To Donate to MegAid
Bendigo Bank
MegAid Trust
BSB 633000
Acct 137281846

Tube Wean a complete success!

2009-12-03T21:50:00.003+11:00

Meg, Jason & I were discharged 3 days early from the RCH Melbourne after Meg put on weight!

She had gone 10 days with no peg feeds (only some water) and the team were astounded that after such a short time her weight increased - it was only 35g increase - but it doesnt matter - what it means is that she is actually able to eat enough to sustain herself.

I can tell you it has been a long hard Road - I always beleived that Meg could eat orally but was constantly told by "the experts" that her swallow MAY be unsafe and we had to be very cautious and that the oral motor dysfunction she displayed would prevent her from eating enough to sustain herself. I really had to battle to get the opportunity to have the support of the RCH Melbourne to try to wean Meg in a safe and supported manner, ensuring that she did not become dehydrated or loose too much weight too fast - also to be able to stay somewhere where all I had to do was concentrate on Meg and her eating - I dont think I could have done this at home - it is a really hard emotional ride - But here we are - Meg's favorite food is spaghetti bolognaise - just like her Big brother Tom - and to be honest I'm pretty partial to it also.

So I guess the moral of this story is - follow your instincts mums - you will be right!

To Donate to MegAid
Bendigo Bank
MegAid Trust
BSB 633000
Acct 137281846

Huge thanks to the Castricum Kids

2009-12-03T21:37:00.002+11:00

While in Melbourne doing the tube wean with Meg - I had the mail brought down from home - I received a lovely and touching letter from the Castricum kids - Here it is.

Dear Kate,
recently my girls did some babysitting in town while some locals went to the "Rocky Horror show" - when they heard that it was a fundraiser for Meg they wanted to donate some of their earnings from the night, their little brother also wanted to give some of his lawn mowing money to help out!
Please accept this small donation and we hope it helps towards some much needed equipment for Meg. You guys are doing such a wonderful job, you are an inspiration.
From the Castricum kids - Harrietville.

It is incredible that kids would think of others when there is so much to buy for themselves - what an amazing family! - I hope your proud of your kids - they are truely remarkable and we accept your (not so small) donation of $100 with lots of love and heart felt thanks from the Casley family!
xxx

To Donate to MegAid
Bendigo Bank
MegAid Trust
BSB 633000
Acct 137281846

Fundraising reaches a new high

2009-11-29T20:58:00.003+11:00

An email arrived before we left home from Rhonda & Barry from Victorian Masonic Motorcycle Association saying that they would like to donate $500 towards our efforts - An extreemly kind and generous gesture from the club. Today I receive another email from Rhonda saying that the Bright Freemasons are going to match the $500 donation making a fabulous donation of $1000 from the two clubs.
The cheques we hope will be presented next sunday when the Victorian Masonic Motorcycle Association does a ride out to Freeburgh.
We look forward to meeting you all and hope you will accept our sincerest thanks for your thoughfullness and generosity.

This brings our fundrasing total to a new high of an astounding $46,000.00.

When we set our fundraising goal of $50,000.00 I dont think we ever really imagined we would reach it - but it is now so close to within our reach and what a wonderful start for Meg's - MegAid trust for her future equipment needs and therapies - again a huge thanks to everyone who has helped us acheive this amazing result.

To Donate to MegAid
Bendigo Bank
MegAid Trust
BSB 633000
Acct 137281846

Tube weaning

2009-11-29T20:22:00.002+11:00

Sorry for the long time with no update - The day after TimeWarp - no rest for the wicked -Meg, Jason and I began Meg's trial tube wean & have been at the RCH Melbourne - this means we are seeing if she is capable of eating & drinking orally enough to sustain herself without having to tube feed her. We are on day 10 and it has been a long hard emotional road. But Meg is taking a very keen interest in food for the first time in her life. The weaning process basicly means we stop feeding her via her PEG (Gastonomy tube) and offer her food and drink all the time. Quite an exhausting process, its very hard to see your little one unhappy and hungry - I keep thinking of the hungry hungry catapillar - on day one she ate one spoon of puree - on day 2 she ate one spoon of puree and 1/2 a weetbix etc etc etc - and it really has been very much like that right through up to day 10 when she ate Houmous / Caviar dip/ avocado/ Lamb & Veg casserole w sour cream / mango & apple cereal / Tiramisu / carrot sticks (steamed) / strawberries / apricot tinned & lots more to boot.

We are learing what she likes and doesnt like and her communication (Yes & No's) are getting better and better - its all up to her and we have to place her under no pressure to eat. Not an easy task!

Anyway thats the latest on where we are at with Meg - and now the rest is up to her - we will moniter her weight and hope her oral intake increases with each day untill she starts to put on weight - which could be 4 - 5 months away. This process will totally change her Biorhythm's and is like breaking an addiction to her Peg feeds.

I would like to thank the team at RCH - for trusting in me and for giving us the chance to do this here under their guidence as it was not believed by many experts that Meg would be able to eat orally but she seems to be proving them all wrong to date, lets hope she continues to improve, we still have a long way to go.

For more information on the process we are going through please look up http://www.notube.at/ - this is the clinic in Graz Austria we have spoken about in past posts - we are currently using their online coaching service in conjunction with the RCH team. ( Your donations have helped pay for the $700 EU we had to pay to use the service.)

If your looking at our blog because your going through a similar thing with your child then please log on to http://www.tubefedkids.ning.com/ for a fantastic supportive community of parents with tube fed children, some going through this some have been through this and some are about to begin, its a great source of support, Ideas and information.

Thanks to everyone for all the support.

Kate n Meg

To Donate to MegAid
Bendigo Bank
MegAid Trust
BSB 633000
Acct 137281846

Big Thanks to Mercedes Benz Commercial Vehicles Somerton

2009-11-22T07:13:00.005+11:00

Meg is being admitted to the Royal Chidren's Hospital Melbourne tomorrow to undergo a Tube weaning trial. We hope to at least partially wean her from her feeding tube and encorage her to eat more orally.

Mercedez benz Commercial Vehicles Somerton have kindly loaned us a fantastic Vito Van to move all of Meg's equipment and feeding chairs etc down to Melbourne (a lot of gear!)- it is a huge help to us and we would like to thank them profusely.

Mercedes-Benz Commercial Vehicles Somerton carries an extensive stock of new vehicles from our range of products which include:
• Mercedes-Benz Trucks
• Mercedes-Benz Vans
• Freightliner & Sterling Trucks
• Fuso Trucks

Our service and parts teams are factory trained to provide ongoing support for the life of your vehicle.

Thank you Anthony and team.

To Donate to MegAid
Bendigo Bank
MegAid Trust
BSB 633000
Acct 137281846

Love to Meg

2009-11-22T07:09:00.002+11:00

An annonomous $1000 donation was made in to the MegAid trust account last Thursday with the note "Love to Meg" - What an amazingly generous donation - thankyou so much whom ever you may be. You have our sincere gratitude.

To Donate to MegAid
Bendigo Bank
MegAid Trust
BSB 633000
Acct 137281846

Oh What a NIGHT!

2009-11-21T20:06:00.004+11:00

It has to be said that I really don;t think Bright has ever seen the likes of it!

"The Time Warp a musical tribute to Rocky Horror"

It was a fabulous night - loads of people dressed up in appropriate wear / or should I say inappropriate wear for the night and it was hard to find anyone who wasn't enjoying themselves.

Hope you enjoy the Pic!

Down to the serious business of why we were there though.

The fundraisng was a resounding success the Tally so far from the night (we are still waiting on a couple of stalls to get back to us with a final count) is an astounding.................................... $14,763.67, yes folks that's right $14,763.67!

What a night Hey - I cant thank the community of the Alpine Valley enough for getting behind our little Meg and helping us out! Considering our little township of Bright is a mere 2000 ish in population - it just shows how much support we are getting from everyone.

Thanks Again Alpine Valley & everyone who made the trip up or down for the night.

We really hope you enjoyed yourselves and we will keep you posted about next year!

More updates once we have the final tally in.

To Donate to MegAid
Bendigo Bank
MegAid Trust
BSB 633000
Acct 137281846

MORE TIMEWARP PIC'S

2009-11-20T20:55:00.000+11:00

Paula Frankenfurter

The Peninsula Crew

Magenta's en-mass

Oh GEORGE!!

Strutting your stuff

Ray Takes the stage!

Lets do the TimeWarp again!

Jason takes the stage

And does a turn

Ray & Sarah

The shire contingent

Jason - getting into character

Joan & Meg

Oh she Just saw someone wearing the same outfit!

Matty Hobbs - AKA - Hobbsie - 3NE / Edge Fm Brekkie announcer & our MC for the Night! Looking FAB in a lovely ensomble

Oh Dear Just what is behind that clip board???

Just a bit of Lippie to finish you off darlink

The Casley Clan at it's finest!

Moulin Rouge meets Rocky Horror!!

The Fabulous Bar staff - all volunteers - Thank you - thank you - thank you!

Eleana who donated $1000 of wine from her vineyard in Porepunkah -www.mayfordwwines.com , Karen, Gemma, Ben, Katie, Chev & Pam from Brown Bros who arranged for a generous donation from http://www.brownbrothers.com.au/ wines in Milawa

Oh Dear I hope Meg & Tom will not be scared for life!

The Door B....tchs ;-) - Christy & Carol! - Promo / ticketing / hall set up & run sheet gurus!

To Donate to MegAid
Bendigo Bank
MegAid Trust
BSB 633000
Acct 137281846

TIMEWARP - 1 DAY AWAY - TIX STILL AVAIL!!

2009-11-18T07:44:00.001+11:00

Thanks for purchasing tickets to this Asss….tounding show. Following is a quick look at what’s happening on the Eeee….vening.

It’s just a jump to the left…..

If you’ve bought tickets as a part of a group can you please forward this email on to the other members in your group so they too can be Asss…tounded by what we have in store for you!

Firstly – house keeping (Magenta, Riff Raff) –doors will open promptly at 6.30pm – not before! You will be asked to take your seats at 7.15pm for some pre show announcements – We hope you will enjoy the show! – it starts promptly at 7.30pm! Please don’t be late, the doors will be closed at this time!

Food and beverages will be available on your arrival & at interval, we will be offering Café Chiaro pizza slabs @ $5 and fresh made Lions Club popcorn @ $3. So if things get a little hectic while you squeeze into your fishnets, don’t worry you can eat something at the show.

If you’re a little more organized we have a number of eateries in town offering a pre show dinner sitting beginning at 5.30pm, as an added bonus they are donating 10% of sales back to the MegAid Trust. Bookings are essential at the following participating eateries. Remember you will need to be at the entertainment center no later than 7.15pm.
Poplars Restaurant *Ph 0357 551655 – www.poplars.com.au
Bright Brewery * Ph 035755130 - www.brightbrewery.com.au
Suganya’s Thai Restaurant * Ph 0357 552 380

And then a step to the Riiii…..ghhhht

AUCTION
During Intermission we think you’ll ‘Shiver with antici…pation!’ as we have an Auction that will simply ‘astound’ you!

We hope you will enjoy the following Auction packages, remember there are some great Christmas gifts here and if you don’t want an entire package, why not bid with a friend or two, plan your biding strategy early as these items are HOT HOT HOT!
Everything has been generously donated so every cent from the auction will go to our little Meg!

1. Dinner Plain package (valued @ over $840)
2 nights accommodation at Dinner Plain’s Champagne Studio Apartment including a bottle of wine for 2 people
during Summer
1 Year subscription to Alpine Style Magazine
1 family pass to the unique Karrs Reef goldmine tour at Yackandandah
1 personal 90 minute Pilates session with Ski Pilates Fusion instructor Sally Rosenhain
1 Family (4people) entry pass to Dinner Plain’s Onsen Spa communal bathing facility

2. All Seasons Sports package (valued @ over $1650)
1 x 2 day lift pass for Mt Hotham for winter 2010
2 x 1 day lift passes for Falls Creek for winter 2010
1 x $400 voucher for Rays Ski Hire Myrtleford
8 rounds of golf at Bright Country Golf Club.
1 x tandem flight with Active Paragliding Bright
1 x $199 voucher for Hoys Ski Hire 2 x adult boots & skis or boots & board hire for 2010
A selection of Makalu designed winter & climbing wear:
Makalu – Red & grey breathable sports shirt size M Wilderness – Green Polar fleece jacket size L
Wilderness – Black polar fleece vest Size M Makalu – 2tone blue climbing shirt size S

3.Queenscliff Family Fun Holiday package (valued @ over $810)
2 nights accommodation for up to 4 people @ Beacon Resort, Queenscliff
2 x adult 30 min jet boat ride vouchers at Queenscliff or Geelong
1 x adult snorkel with the dolphins voucher with Queenscliff Dolphin Swims
1 x family travel voucher for the Belarine Railway steam train ride Queenscliff to Drysdale & Return

4. Business package (valued @ over $3000)
$2,000 of radio advertising with 3NE & Edge FM
1 x personal tax return voucher (up to $100) from Paul Vey Accounting
1 x 1hr consultation with Maverick Strategies for website analysis
4 x personal tax returns (up to $500) from Terry Philip Tax & Accounting services
1 x 10 Kg box of Cadbury mini chocolates

5. Big Bali Break (valued @ over $1590)
Pre travel deluxe facial beauty treatment at Bright Beauty Beautique
7 nights accommodation at ‘Villa Mango Sunset’, Pererenan Beach, Canggu, Bali
for 4 people from 17 – 24 January 2010 (possible date neg).
Includes : Cleaner / night security & gardener; Car & driver, available from 8.30am – 10pm each day inc airport
transfers; Seafood dinner & first drinks for 2 at Ombak Café, Canggu; Massage from Martini – they come to you;
Private swimming pool.

6. Kayaking Package (valued @ over $700)
Anaconda ‘Emotion Spit Fire’ Kayak
Seak Life Vest and Paddle.

RAFFLE
During Intermission will be your last chance to purchase tickets to our ‘hot patootie’ raffle, so if you haven’t bought
your ticket and you would like to – please chase our girls down before the end of Intermission. $5.00 per ticket.
Raffle will be drawn at the conclusion of the Evening.

1 Prize Bright Stars Indulgent Holiday vouchers – value $1500
2 Prize Mornington Peninsula Beach Escape vouchers – value $1400
3 Prize Supermarket Voucher – value $1000.00
4 Prize Queenscliff Adventure Vouchers – value $800
5 Prize Framed print - acclaimed photographer Adrian Lander – value $300

BEST DRESSED PRIZES We don’t ‘judge a book by it’s cover ’….but we will be awarding prizes to those best
dressed ‘creatures of the night ‘… at the conclusion of the evening….

LUCKY SEAT PRIZES - Will be announced before the show! We have some FAB….ulous give away’s for you!

BLIND WINE:
Donations have flooded in from some of our best local wineries for our Blind Wine sale, donated is some great and some not so great stock, take your chance at $15 per bottle to take home and enjoy. Good luck!

FOOD AND BEVERAGES PRICE LIST:
Still Water and Soft Drinks $2.00
Popcorn $3.00
Slab of Pizza from Café Chiaro $5.00
Wines/Beers Glass Bottle
Light Beer - $4.00
Full Strength Beer - $5.00
Brown Brothers NV Sparkling Wine $5.00 $25.00
Black Pearl 2008 Rosé (Meg’s wine) $5.00 $25.00
Mayford 2008 Chardonnay $6.00 $30.00
Mayford 2008 Tempranillo $6.00 $30.00
Gordon’s Gin & Tonic $7.00
Johnnie Walker & Coke $7.00

Tea, Coffee & Cadbury Chocolate – gold coin donation

To Donate to MegAid
Bendigo Bank
MegAid Trust
BSB 633000
Acct 137281846

Thanks to the Morris family

2009-11-18T07:42:00.001+11:00

To Donate to MegAid
Bendigo Bank
MegAid Trust
BSB 633000
Acct 137281846

Thanks to the Mattinson Family

2009-11-12T14:06:00.002+11:00

Another lovely surprise this morning a $200 donation from the Mattinson Family into the MegAid account - thanks so much for thinking of Meg & contributing to her future wellbeing. Please accept our heart felt thanks.

A Quick update on how the fundrasing is going to date - with donations direct into the account, donations through our various donation tins and people just handing us cash while selling raffle tix the MegAid Trust account has raised an astounding $8546.00

With our two biggest fundrasing events still yet come next week, we are well on our way towards reaching our goal of $50'000.00. We really cant thank everyone enough who has helped in anyway - big or small it all adds up and shows we really can make a big difference!

Well done everyone and Thanks!

Kate, Meg, Jason & Tom
xxx

To Donate to MegAid
Bendigo Bank
MegAid Trust
BSB 633000
Acct 137281846

FLOWER POWER FOR MEG!

2009-11-12T13:47:00.003+11:00

Hi Every One!

We are hoping you can pick up a paint brush at my place and have some fun unleashing your creativity on canvas!

It’s all for a great cause with funds raised going directly to the MegAid Trust.

There are limited places available (my shed is only so big!) so please let me know if you can come by next Thursday 19 Nov. (We’re away 19 Nov – 3 Dec). Cheers Lou Pullar

Flower power for Meg

A fundraising event for MegAid Trust

www.megcasley.blogspot.com

Learn to paint daisy flowers on canvas with
local Springhurst artist Lisa Bishop and
take home your own masterpiece!

11am Friday 11th December 2009

$55 incl glass of bubbly, light lunch, canvas, materials & instruction.

1691 Great Alpine Road Smoko

Bookings essential: Lou Pullar 0409 331 938, loupullar@bigpond.com

Unleash your creativity

PS if you haven’t got your Time Warp tickets for next Thursday 19th, dont miss out on an awesome show - grab them now at the Bright Visitor’s Info

To Donate to MegAid
Bendigo Bank
MegAid Trust
BSB 633000
Acct 137281846

Off the cuff donations

2009-11-10T17:57:00.002+11:00

Big huge thanks to Wayne Neilson from Open Family Australia for the donation of $500 also to Maria McGrath for the $100 donation into the megAid account. Thankyou so much for your support and care for our little Meg.
These were lovely surprises while checking MegAid account today.

To Donate to MegAid
Bendigo Bank
MegAid Trust
BSB 633000
Acct 137281846

9 DAYS TO GO - TILL TIME WARP

2009-11-10T13:46:00.002+11:00

We still have tickets available for TIME WARP - a musical tribute to Rocky Horror on 19th November 2009.
Rush in Now! - Final call - you can purchase these HOT seats by calling
Alpine Visitor Information Centre in Bright (next to Riverdeck cafe)
ph: 1800 111 885
$35.00 plus $2.50 booking fee

Be quick these tix are selling fast!
Be there to Help Our Meg, all proceeds less production costs will be donated to the MegAid trust.

To Donate to MegAid
Bendigo Bank
MegAid Trust
BSB 633000
Acct 137281846

Supreme Raffle effort

2009-11-08T06:51:00.003+11:00

A HUGE BIG THANKYOU to Kez, Lou, Jude, Vanessa, Tom & Marg & Peter Hibbins (Gma & Gpa) who yesterday in just 4 hours with Jason and myself sold over 400 raffle tickets. Making over $2000 for Meg.

Also a big thanks to Fletcher Rosser 6yo who made a lucky dip out of all his old toys, decorated the box with love hearts & signs for Meg and sold them to help benefit the MegAid trust - he made $15 towards the trust. - See Pic! Thanks Fletcher for such a lovely thing to do to help our little Meggie.

Just one More - we would like to thank all the Hot -Rodders who gave so generously in buying raffle tickets and just putting money in the tin. The tin itself raised $299 yesterday.

We will be back down at Pioneer Park today trying to sell the remainder of the Raffle tickets any assistance from anyone would be greatly appreciated.

Heaps of raffle books are comming back now - mostly fully sold - well done everyone and thanks so much for all your hard work in getting those tickets sold, we have had 48 people selling tickets on Rotary's behalf - our aim was to sell the required 2000 tickets which would have raised $10'000 for Meg - the way we are going it looks like we will sell 3000 tickets raising $15'000 - we could not have done it without everyones help, even those who only sold a few tickets it has all added up to a tremendous effort on everyones behalf.

Well done team - Together we really can make a difference!

Kate n Meg

xxxx

To Donate to MegAid
Bendigo Bank
MegAid Trust
BSB 633000
Acct 137281846

Meg's day a HUGE success!

2009-11-06T16:24:00.013+11:00

Meg's / Oaks day at the Star Hotel yesterday was a HUGE success.

The ladies of Bright turned out in their finest racing attire yesterday to help raise funds for our little Meg. Hats & fascinators were the order of the day along with the fabulous non-alcoholic cocktails supplied by the Star Hotel Bright. The champagne flowed and laughter filled the newly renovated Star room where guests were treated to lovely fingerfood all day.

Prizes raised over $500 for the MegAid trust.

The winners were:

1st - Ya Graham winning the fabulous Bonsai tree donated by Richard Llanos from Harrietville.

2nd - Jane Foley winning the Wangaratta night for 2 including dinner at Cafe Martini, Accommodation at Warby Lodge & a show at the fabulous new performing arts centre.

3rd - Dot Farrington winning dinner & accommodation at the Stanley Hotel.

Len the resident punter put the bets on for the ladies for the day's punters club.

Fashions on the field was a highlight with most of the ladies partisipating in a strut around the Star room, there was hot competition but ultimately our winners were: Julie Buckley winning first prize and Robyn Mcauliffe comming runners up, see their pics above.

Fantastic door prizes were won & everyone went home with something.

A huge thanks goes to all the people & businesses that donated prizes for the event including: IGA Bright, Star Hotel, many of the local shops of Bright, Richard Llanos, Cafe Martini, Warby Lodge, Wangaratta performing arts center & the Stanley Hotel.

We live in such a wonderful community full of people who are happy to give so much to its residents.

The biggest thankyou of all goes to Gail Bennett for organising the entire event, druming up interest from the ladies and organising the prizes / raffles / door prizes etc.

Its locals like Gail who can make such a difference to the lives of those that need some help, no one asked Gail to do this for us - she just heard that we were in need and went ahead and did something to help. Thanks Gail really we can't thankyou enough.

all our love the Casley's xxxxxxxxxx

More updates to follow on the total money raised on the day

To Donate to MegAid
Bendigo Bank
MegAid Trust
BSB 633000
Acct 137281846

Meg's Day - this Thursday 5th Nov - Get your tickets now from the Star Hotel

2009-11-01T22:48:00.003+11:00

$25 at ticket including chicken & champagne - Tickets can be bought at the Star Hotel Bright or contact Gail on 0458733377
All proceeds being donated to MegAid Trust

Come and have a glass of bubbles with Kate n Meg

To Donate to MegAid
Bendigo Bank
MegAid Trust
BSB 633000
Acct 137281846

Time Warp Interval - Auction Items

2009-11-01T22:28:00.002+11:00

If your lucky enough to be comming to this fabulous evening - Here is the Auction Package list being held during interval.
Some fantastic packages up for grabs, full of great christmas gifts & family getaways.
If the packages seem to large why not bid with some friends and purchase them together.
Use your frequent flier points to get to Bali and stay at this amazing Villa!
Best of luck and happy bidding.
Remember all items have been donated so all proceeds from the Auction will go directly to the MegAid trust.

1.Dinner Plain Package Valued at $840 Including:
2 nights accommodation at Dinner Plain including a bottle of wine for 2 people during summer at Champagne studio apartment $356
1 Year subscription to Alpine Style Magazine $120
A family pass to the unique Karrs Reef goldmine tour at Yacandandah $85
1 personal 90 min try Pilates session with Ski Pilates fusion instructor Sally Rosenhain $120
1 family entry pass to Onsen Spa Dinner Plain for up to 4 people for entry to their communal bathing facility $160

2. Summer/Winter sport bonanza Valued at $1667 Including:
1 x 2 day lift pass for Mt Hotham for winter 2010 $194
2 x 1 day lift passes for Falls Creek for winter 2010 $194
1 x $400 voucher for Rays Ski Hire Myrtleford
8 rounds of golf at Bright Country Golf Club. $200
1 x tandem flight with Active Paragliding Bright $280
1 x $199 voucher for Hoys Ski Hire 2 x adult boots & skis or boots & board hire for 2010
A selection of Makalu designed winter & climbing wear $200 Inc:
Makalu – Red & grey breathable sports shirt size M
Wilderness – Black polar fleece vest Size M
Wilderness – Green Polar fleece jacket size L
Makalu – 2tone blue climbing shirt size S

3. Queenscliff Family holiday fun package Valued at $815 – Including:
2 nights accommodation for up to 4 people @ Beacon Resort Queenscliff $540
2 x adult 30 min jet boat rides vouchers at Queenscliff or Geelong $120
1 x adult snorkel with the dolphins voucher with Queenscliff Dolphin Swims $120
1 x family travel voucher for the Belarine Railway steam train ride Queenscliff to Drysdale & Return $35

4. Business package Valued at $3000 – Including:
$2000 worth of radio advertising with 3NE & Edge FM
1 x personal tax voucher to the value of $100
1 x 1hr consultation with Maverick Strategies for website analysis $200
4 x personal tax returns from Terry Philip Tax & Accounting services $500.
1 x 10 Kg box of Cadbury mini chocolates valued at $200

5. Big Bali Break Valued at $1590 Including:
Pre travel deluxe facial beauty treatment at Bright Beauty Beautique $90
7 nights accommodation for 4 people from 17th – 24th January 2010
(may be room for some date negotiation) at ‘VILLA MANGO SUNSET’, Perrerenan Beach, Canggu, Bali.
Cleaner/night security & gardener
Car & driver available from 8.30am – 10pm each day inc airport transfers.
Seafood dinner & first drinks for 2 at Ombak Café, Canggu
Massage from Martini – they come to you
Private swimming pool
Cook available

6. Kayak from Anaconda Valued at $700 Including:
Emotion Spit Fire Kayak
Seak Life Vest
Paddle

To Donate to MegAid
Bendigo Bank
MegAid Trust
BSB 633000
Acct 137281846

Donation tins

2009-11-01T22:09:00.004+11:00

We cracked another one of Meg's donation tins over the weekend to discover $250 of coins.
Thanks to all that gave us their small & large change, it's amazing how it adds up.

To Donate to MegAid
Bendigo Bank
MegAid Trust
BSB 633000
Acct 137281846

2009-11-01T21:02:00.001+11:00

To Donate to MegAid
Bendigo Bank
MegAid Trust
BSB 633000
Acct 137281846

Collecting - Euro's

2009-11-01T08:25:00.002+11:00

Big thanks to Doris & Gunther Drisch - our neighbours who have given Meg 35.61 Eu to spend on our trip to Germany thats $58.26 Au.
Thanks guys that will come in very handy!

To Donate to MegAid
Bendigo Bank
MegAid Trust
BSB 633000
Acct 137281846

Get your dancing shoes on - We present to you the "TIME WARP" Tickets Still available

2009-10-30T21:22:00.001+11:00

To Donate to MegAid
Bendigo Bank
MegAid Trust
BSB 633000
Acct 137281846

ROCKY HORROR SHOW TICKETS ON SALE NOW - Tickets still available!

2009-10-29T15:37:00.000+11:00

The MegAid Committee presents....
An Andrew Malouf Entertainment and Event Theatre Australia Production.

TimeWarp - a Tribute to Rocky Horror

DATE: THURSDAY 19th NOVEMBER 2009

VENUE: BRIGHT ENTERTAINMENT CENTRE - 1A Railway Ave. Bright

TIME: 6:30pm for 7:30pm sharp

BOOKINGS: Allocated seating so dont wait, unless you want to sit in the back row. Buy your tickets NOW!

Tickets available at the Alpine Visitor Information Centre (next to Riverdeck cafe) 119 Gavan Street Bright

ph : 03 57501 233 Tollfree : 1800 111885

Online ticket sales enquiries http://www.visitalpinevictoria.com.au/

COST: $35.00 per ticket

(plus $2.50 booking fee to Alpine Visitor Information Centre)

Wheelchair spaces available

This is a licenced Event, strictly no BYO.

Amazing Auction @ Intermission

Proceeds from this fabulous Evening, less production costs, will be donated to the MegAid Trust.

To Donate to MegAid
Bendigo Bank
MegAid Trust
BSB 633000
Acct 137281846

Hello to National Nine News viewers

2009-10-27T15:16:00.003+11:00

To Donate to MegAid
Bendigo Bank
MegAid Trust
BSB 633000
Acct 137281846

Welcome to Meg's Blog all the viewers from National Nine News.

To make it easier for you to navigate this site, please use the navigation bar on the right hand side of the page. Most of the information about Meg, her disability, our plans for her future, the stem cell therapy that we are raising funds for & the Graz feeding clinic are are located in the earlier posts. We use this blog to keep interested people up to date with Meg's progress and to thank all the fabulous people & businesses who have donated to the MegAid trust.

Thank you for your interest.

The Casley Family.

Japanese Bonsai

2009-10-20T20:25:00.003+11:00

Richard Llanos from Harrietville has kindly donated this gorgeous bonsai tree. It is quite a magnificent specimen and will have taken many years to grow to this size and form.
It will be raffled off at the Meg's / Oaks day - lunch being held at the Star Hotel Bright on Thursday 5th November 2009. Be there to enter.

Thanks very much Richard & family for your generous donation to help our little meg.

To Donate to MegAid
Bendigo Bank
MegAid Trust
BSB 633000
Acct 137281846

Handmade Quilt is Heaven

2009-10-20T19:48:00.005+11:00

Merle Astley from Freeburgh has made Meg the most beautiful quilt for us to offer as a lucky prize draw to help raise money for our Meg.

Here are some pics - it is done in such lovely colours and beautifully hand stitched - we feel so privileged to have such a work of art to offer people as a fabulous prize.

People can go in the draw to win this lovely quilt - beginning at the Meg's / Oaks day - ladies lunch being held at the Star hotel in Bright on the 5th November 2009 and it will be moved around Bright to various locations until the week before Christmas when the lucky winner will be drawn.

$3 per entry or 2 for $5, keep your eyes out for it in a hairdressers or shop in Bright near you. It will make a lovely christmas gift.

Thanks Merel for such a kind donation it must have taken hours.

To Donate to MegAid
Bendigo Bank
MegAid Trust
BSB 633000
Acct 137281846

Fundraising Tops $7000

2009-10-16T06:16:00.003+11:00

Our running tally in the MegAid trust account has topped $7000 with our account balance reaching a fantastic $7041.40. Thanks again to all those who have so generously given to help support our little Pearl Meg.

To Donate to MegAid
Bendigo Bank
MegAid Trust
BSB 633000
Acct 137281846

DJ Eddie - Philanthropist

2009-10-11T07:34:00.003+11:00

A Huge surprise yesterday to find a donation in the MegAid trust account of $514.60 from DJ Eddie who unknown to us did a GIG at Mt Hotham in honor of our little Meg.

Big Hugs to Eddie - wish we could have been there - now you can add Philanthropist to your resume! Will your talents never end? We are so moved by your kindness and the thoughts from the hill. Thanks so much.

All our love Katie (Palmer) Jason Tom N Meg xx

To Learn more about Buff aka DJ Eddie check out this great article in Empire Ave Mag http://www.empireave.com/?p=3226&cpage=1#comment-4285

To Donate to MegAid
Bendigo Bank
MegAid Trust
BSB 633000
Acct 137281846

Coin City

2009-10-11T07:32:00.001+11:00

We did a pick up around Bright of the coin donation tins and have deposited another $225 to the MegAid trust account. Thanks for all who have given their spare change.

To Donate to MegAid
Bendigo Bank
MegAid Trust
BSB 633000
Acct 137281846

Big Thanks to the Townsend Clan

2009-10-08T17:25:00.007+11:00

Big thanks to Des and Terrell Townsend our neighbours who help us constantly with the little things in life, they take out and bring in our bins every week, Terrell does ironing when needed, she's also come over when emergencies arise; 6.30am one morning when my back went, to get Meg up, dressed and fed before help arrived. Des fixes things for Meg here are pics of a couple of jobs he's done recently to help us out Fixing Nellie the rocking Horse which Meg adores and today the table for her corner seat, meaning her therapy can continue more quickly.

Their Chidren Danielle & Nicole & their lovely kids Charlotte, Owen, Lucy, Max, Edward, Josh & Bella have also been great giving Meg heaps of clothes from their little red wagon range http://www.danniesdevinedesigns.com/, and donating money directly to the MegAid bank account. The fantastic drawings they did for Meg are now laminated and adorne Meg's bedroom walls.

Terrell http://www.catherinescottage.com/ & her sister Jennie from http://www.brightmysticvalleyholidayunits.com/ have donated all the accommodation for the cast and crew of "Time Warp" a musical tribute to Rocky Horror, meaning more money raised for the event will go directly to the MegAid trust.

We the Casley's - Kate, Jason, Tom, Meg & Spotty (the whippet) have a lot to thank the Townsend clan for and we do so publicly on Meg's blog, thanks so much all of you for all the love, support and assistance you have given us and continue to give every day.

with all our love the Casley Clan

xxxxx

Hand made Quilting exhibition at Home Spun Memories donates entry fee

2009-10-08T15:44:00.004+11:00

Home Spun Memories - shop 1 Barnard St Bright is holding a hand made quilting exhibition from 30th October to 6th November 2009. For more information call Amanda on 0357501199 or click on the title to link to the blog.
Entry will be via a gold coin donation which will be donated to the MegAid trust.
If you know of anyone into scrapbooking or quilting let them know about this fabulous exhibition happening right here in Bright.
Thanks to Amanda for her generous offer to donate to our cause.

To Donate to MegAid
Bendigo Bank
MegAid Trust
BSB 633000
Acct 137281846

The Benwell family donate

2009-10-06T13:14:00.003+11:00

Thanks to the Benwell family who have donated $200 to the MegAid trust. We are constantly amazed by peoples kindness and generosity. Thank you so much.

This makes our running total $6101

To Donate to MegAid
Bendigo Bank
MegAid Trust
BSB 633000
Acct 137281846

Thanks to Eleana & Brian

2009-10-02T10:16:00.003+10:00

A Huge thanks to Eleana Anderson & Brian Nicholson for the donation of $1000 worth of wine for us to sell on the night of Meg's big fundraser "Time warp" a musical tribute to Rocky Horror.

You will be enjoying (if you're comming to the event) some lovely locally grown hand made wines.

El has also offered to make a vat of wine for Meg each year which will be called Black Pearl, it will be a pink Rose in a French style with all profits being donated to the MegAid Trust. Labeled with a special Meg label. Once we have set up an ordering system had the labels designed and printed we will tell you more about how to buy.

What a great idea Eleana, you're offer to make the wine for us for free is just so overwhelmingly generous I really don't know what to say except thank you so so much, this will be such a great way to raise money for Meg's needs on an annual basis.

www.mayfordwines.com for more info about El - her family and her fabulous wines. The Shiraz (sorry all sold out now) of which I partook in last night was dreamy. El's Tempranillo Released August 2009 has already won awards and will be featured at Meg's fundraiser.

To Donate to MegAid
Bendigo Bank
MegAid Trust
BSB 633000
Acct 137281846

ONE FOR THE GIRLS

2009-10-02T10:06:00.003+10:00

PUT THIS DATE IN YOUR DIARY GIRLS
One of our Local hero's - Gail Bennett is organising a MegAid function, it's an Oak's day lunch at the Star Hotel Bright on thursday 6th November 2009.
So get your hats out girls and come along, Gails organising some fantastic prizes and giveaways with a percentage of all bets being donated to the MegAid trust. Chicken and champagne will be the order of the day.
Tickets will be available from the Alpine or Star Hotel next week.
More information soon.

To Donate to MegAid
Bendigo Bank
MegAid Trust
BSB 633000
Acct 137281846

Katie helps from N.Z

2009-09-29T13:26:00.005+10:00

For those who know and love our dear friend Katie Deare (nee Pervan) who now lives across the Tasman in Hamilton, New Zealand. Katie a renowned yoga instructor ran a Fundraser yoga class to assist in our MegAid efforts. She has sent a cheque across and even with the exchange rate has managed to raise $235 au. A fantastic effort and we thankyou so much Katie and Alan (Katie's husband Alan has done all our graphic art work FOC for MegAid)

The letter I received along with the cheque was so heart warming I have shared it with you all here.

But more importantly I wanted to say to Katie that your love and friendship are one of the strengths which help me carry on, thankyou for being there for me when I need an ear and thanks for reminding me what the important things in life are. With big Kate Palmer hugs to you when ever you need them. Kate.P

Katie's letter follows - for those friends & locals who know and love Katie Pervan this will make you smile.

To dear Kate, well finally this gets over the ditch, the money sat in cash lining an envelope for 2 weeks, waiting on a few donations pending - then a few weeks more. Then the bank visits got few and far between with new job - Gang Warfare - I'm not sure. I do believe though that I have not seen a cheque looking like this since about 1978.
To fundraise as we did within the yoga community proved very easy. People were very keen. So we're doing it again. I'm even thinking of holding a fundraiser jumble sale straight after. This appeals to me. I get to run my own veritable OP shop for a day, something I aspire to do. So with Yoga, (and we ate good food afterwards), & old clothes, I couldn't be happier.
I'm sitting here at our dining table, it's almost 6.30am. I've dropped my yoga practice early this morning to write you this letter and get this money to you. You came to me somewhere between downward dog and trikonasana - and I went and put the kettle on instead, Resistance is pointless. I have successfully tried to get through my whole practice when my mind is saying "comeon put the kettle on n read a mag instead", but not every time.
(some more personal words of wisdom for me here. I don't think its appropriate for me to share them.)

So finally my dear friend, this picture was drawn especially for Meg by one of my students daughter. I think she has drawn her well. Your darling heart Meg who despite all the trauma has brought love and light into this world.

Hamiltonians think so - with all love Katie xx

Katie's letter came on the back of a beautiful picture from the daughter of one of her students & here it is

To Donate to MegAid
Bendigo Bank
MegAid Trust
BSB 633000
Acct 137281846