Posts Tagged ‘trach’

day 12/365 days of autism

1 Comment// Posted in Uncategorized by on 12.05.10.

Grant spent the day cleaning out the garage in preparation for our upcoming move. We decided to bring all the empty boxes inside so we can start packing. The boys had so much fun building towers and throwing the boxes around the lounge room. Dom crawled inside one of the boxes but it was too [...]

making sense of it

3 Comments// Posted in Uncategorized by on 08.23.10.

  I think the biggest thing this past week, is the recognition that Dominic’s behaviour is something that has left us feeling overwhelmed and ill equipped. Over the past 3 years, we have invested a lot of time and energy into therapy for both boys and have been very proactive in our approach. Very little of this is [...]

the matrix

1 Comment// Posted in Uncategorized by on 08.20.10.

The past few weeks have been such a whirlwind for our little family. I just wish there were more hours in the day for writing so I could share all that has been happening. Frankly, I’m far too busy to have started a blog but as each day goes by, I’m becoming more and more [...]

response to apc inquiry

12 Comments// Posted in Uncategorized by on 08.17.10.

  This submission (submission #247) and others, can be viewed here Dear Commissioners, I am presenting my views and suggestions for consideration by you, in response to the Australian Productivity Commission’s Inquiry into Disability Care and Support. I represent a group of carers across Australia, whose children’s lives are assisted by technology. In particular, families of [...]

day 4 – moving forward

11 Comments// Posted in Uncategorized by on 07.21.10.

  8:00am – The fire alarm went off at RMH this morning, so we arrived a little later than usual. Finger prick was successful and results were all normal. This is great news and should mean he can sleep without oxygen therapy now. 8:45am – After breakfast, we played with the CPAP mask some more. We thought [...]

australian productivity commission inquiry into disability care and support

No Comments// Posted in Uncategorized by on 07.13.10.

  I would like to urge Australian families who are having difficulty accessing care or schooling for their tracheostomy dependent child, to make a submission to this inquiry. This is an opportunity for families to be heard on these very important issues…     You might have heard that the Australian Government has asked the Productivity Commission to [...]

practice makes perfect

No Comments// Posted in Uncategorized by on 07.13.10.

  With Dominic’s decanulation trial less than a week away, we have been doing our best to help him prepare. We recently started using his speaking valve again, which is a little cap that goes over the end of his tracheostomy tube. It has a special valve that allows him to inhale through the trache tube, but when he exhales, the [...]

dominic at day care

4 Comments// Posted in Uncategorized by on 07.09.10.

    Having spent 8 months in hospital and being on his way to surgery number 6, Dominic has missed out on many important and “normal” childhood experiences. Although this has disadvantaged him in some ways, it has also given him an opportunity to develop and grow in others. His time in hospital has taught him [...]

what a wonderful www.orld

1 Comment// Posted in Uncategorized by on 06.30.10.

I was thinking about the very touching post that Ben LeDonni wrote on the LeDonni family blog, explaining how we met. This started me thinking about how much we also relied on the internet, for information and support along the way. I thought I would share some of the sites we regularly use, for anyone [...]

our story

6 Comments// Posted in Uncategorized by on 06.28.10.

    We created the above presentation, so we can share our story with those who visit this site. It is also for the many special people who have helped us along the way. This is our way of saying thank you for your support, and to give you a better understanding of why it [...]