Long over due update

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








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

Belated thanks to Craig & Felicity

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.



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

Meg's doing great

Here's some pics of Meg enjoying breakfast yesterday.



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

Myrtleford Lodge donates

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

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

Thanks to my Family for going without Presents this year

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


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

Harritville Primary School donate $500!

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

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

Eating is working

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!


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