1 year on

Hi everyone

The 20th September 2011 marked 12 months since Judah's open heart surgery and what a different boy we have.  At our last Cardiologist's appointment we were told that while Judah is in 'controlled heart failure', the valve leak now ranges between 'mild and moderate'.  Hearing the word 'mild' was the best thing I have ever heard!  He is continuing to be monitored and we are looking forward to the day when he'll be taken off medication.  He's nearly double his weight and is a cheeky and active 18 month old who spends his time trying to pull Tobias' glassess off. 


September 2011

Tobias' development has been truly remarkable.  In March last year Tobias was still crawling and had 5 words.  We now have a very active 4 year old who runs everywhere and speaks fluently in 7 word sentences.  I would never have believed this is where he would be.

Some months ago I took Tobias for his regular appointment with our Developmental Paediatrician.  Summarising the appointment he said in a disbelieving tone 'He's catching up you know'.  What wonderful words to hear!  He's doing 28 hours of one on one (ABA) therapy a week and working really hard, as are the whole of our wonderful team.  Tobias will need to continue at this rate for at least another year and 5 months by which stage he will be 5 and should be able to attend a 'regular' kindergarten class.

Our current fundraising figure is remarkably $19 315.80!  So many people have come on board to help out with all sorts of fundraising activities.  Our therapy estimate was in excess of $80 000 so it certainly has put a dent in our expenses.  I am constantly humbled by so much generosity and grateful for every bit of help we continue to receive.  We are offering Christmas present donations again this year.  Please see the donation options at the top right hand side of the screen or email me on musatribal@yahoo.com.au

A great win for the Disability Community has been the NDIS (National Disability Insurance Scheme).  While it is still 7 years away, I hope that it will bring Australia into line with many other countries who support the needs of each member of their community, regardless of ability.

Another lovely part of this last year has been spending time with people from the Williams Syndrome Community.  Williams Syndrome is caused by a deletion of about 26 genes from chromosome 7.  This is one of Tobias' other diagnosis.  People with Williams Syndrome are known to have quite extroverted personalities and ease with strangers.  It has been a real delight meeting others with the same diagnosis and their families. Here's a link to a film that has been released recently about Williams';

http://www.embraceablemovie.com/

Dancing continues on with many changes.  My lovely Tribal Spirit sisters Sue Adijans and Ruth Kunde will be moving on in their dance journeys.  They are such lovely dancers, choreographers and great friends and I will truly miss them.  Dayl will also be moving on to live in the US but not for a little while yet.  Over the last few months I have started dancing with the Tribal Jewels from Wollongong.  Jacqui Pepperkamp is an amazing dancer and I'm looking forward to training and dancing with them over the coming year.

Preparations for Tribal & Trance Fest 2012 are well underway and I estimate the weekend will take place over the October long weekend.  Mira Betz is our scheduled international guest and I'm very excited about what she's going to share with us.  Please see http://www.tribalandtrancefest.com/ for futher info.

Cheers

Deb xo