Updates

The Tamsin Colley website

2007 UPDATES

14 August 2007

We are back safe and sound from our "around Australia" trip. Some 17,000 km in total, including over 1,200 km of dirt roads. We all had a great time, and the two girls were wonderful both inside the car and out. Sometimes it seemed we were doing a grand tour of caravan park playgrounds, but we did get to see a lot of amazing things too.

While our initial planning for Tamsin had included both a wheelchair and a walking frame, we decided her progress was sufficient that we would go without them (which freed up an awful lot of packing space!). Tamsin was able to walk up to a kilometre while holding an adult hand, and for anything longer we used a canvas sling ("Ergo child carrier") that enabled her to be piggybacked safely (see photo below). As Tamsin is now just over 20kg, she's a hefty package to carry but it was a reasonable compromise.

As this website is not meant to be either a travel or family blog, but rather a documentation of Tamsin's progress since her diagnosis, we won't describe the holiday in detail. The photos below are a brief extract.

Tamsin's progress over the last 6-9 months continues to be remarkable. We now no longer pack the wheelchair in the car unless we are going for a particularly long walk. Tamsin can be understood by most people with only a little effort. Her continence is still a weak point - there can be weeks of no accidental wees, then a couple over a few days. Generally it's good.

There is a neuropsychologist's report dated May 2007 in the Reports section of the website - it says there is good progress in motor skills, but that there are still problems, and that Tamsin's intellectual functions are consistently average to high average, which is good. Her temperament is great - she is a determined little girl with good concentration and a sunny disposition. Sometimes a bit sulky and whingy if she doesn't get her way - but that's not unusual in a 4 year old. She did perhaps get used to being instantly attended to during the worse stages of her illness and now needs to learn that she can't always have her way.

The most intriguing thing about the current situation is that Tamsin only made slow progress for the first two years after her surgery, and now her recovery is accelerating. Usually the fastest recovery is at the beginning. Whatever the reason, we hope the current faster recovery continues.

Tamsin learning to drive the cruise boat, Chamberlain Gorge,
Kimberly region, Western Australia

Tamsin framed by "Nature's Window", Kalbarri National Park, Western Australia

Shannon, dad Peter and Tamsin, Great Australian Bight, South Australia.
Where the vast Nullarbor Plain terminates in sheer cliffs for hundreds of kilometres that fall into the Southern Ocean.

Tamsin in piggyback sling with mum Cathie and Shannon, Streaky Bay, South Australia.
The town is very pretty but the water is mainly famous for Great White Sharks!

9 May 2007

Another half a year has passed. It's been good. Tamsin has made remarkable progress in walking and speaking over the last year. That, plus just being a more sensible 4.5 year old means that looking after her and her older sister Shannon has become considerably easier. Sometimes it seems life is not so different from other families.

But there is still the wheelchair and the walker in the car most of the time, and Tamsin still can't walk 100 metres consistently.

Another area of significant progress is toilet training / continence. Tamsin seemed quite delayed in being toilet trained, and we thought her lack of ability in this area might be related to her overall ataxia / lack of coordination. She seemed simply unaware that she was about to wee. But this year we have made major progress, tending to rely on a regime of making her go to the toilet every 2-3 hours rather than waiting for her to sense the need. It is now some weeks since we had an "accident".

There are new speech and physiotherapy reports on the Reports page.

The big news is that we are planning a major holiday - 2 months around Australia - mostly in Western Australia. All of June and July 2007, living in a camper trailer (something like a caravan, but more compact with lots of fold out canvas bits). We will need to take a few aids for Tamsin, but overall we don't think it will be a huge challenge over and above the challenge of any holiday with two young kids. Here's hoping!

Tamsin, Cathie and big sister Shannon
Crossing Sydney Harbour Bridge by wheelchair and foot,
75th anniversary of the bridge, 18 March 2007