Family Life

Family Life

Thursday, February 12, 2015

Struggling along

As the first real week of school draws to an end, and all the kiddies are about to drag themselves home, tired & cranky, Toby loses his voice again as his new eyegaze computer has had to be sent back to Melbourne due to faulty batteries, it's very disappointing for us as he was just starting to use it appropriately. Oh well we should have known as nothing ever works well for us, ever. We always somehow get there in the end, but it never works first time. It's going to be a few weeks so for now it's back to the podd book, & limited communication. But well struggle through, we always seem to know what Toby needs, it's at school that's the problem, but we are very thankful that we have a great school. They have just spent $70,000 on a relocatable bathroom for our boy! It has a special electric bed, a shower & a toilet with a Toby sized toilet chair, it's so amazing I want it at home!  I am told that as he gets older & goes to other classrooms the unit can be transported to the back of each classroom and plumbed into place ready for the next year, we are absolutely blown away at the inclusion ability of this school, Toby has cemented his place & is even a bit of a celebrity around school. 

also as the week draws to a close, I'm reflecting on some bad news we got, with Kents cancer growing and causing more difficulties for him, it's getting harder to get out & about but each day is different, ranging from gingerly going out in the boat & having a fun day to not being able to get out of bed due to pain. It's the nature of the disease and it sux. But day by day we will deal with it, forced smile and all. It makes it easier to appreciate the little things, it's hard. But it's all good 

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