I seem to remember an episode of the Simpsons where Homer was amazed at the invention of feeding tubes so he could eat without any effort. Anyone else remember that? We went to Grace’s surgeon appointment yesterday and she immediately started talking about which tube Grace would have. My head was spinning. I was like,...
Note: In the end, Grace didn’t have Sandifer. I believe these were the start of her seizures. Grace has been behaving really strangely lately and I have assumed that this is due to anxiety. In my research, I’ve read the studies on Rett mice and their increased anxiety and stress response levels and took that...
For about 18 months now, Grace has had this very basic standing frame given to us by physio –> As you can see, we had to get pretty creative since she’s as floppy as a (insert clever simile here). We had to pad the front of her with towels and then we had to get...
Well, Grace’s new bed arrived today. How’s that for an opening? I’m not really sure how to write today. All I know is I was walking home from the shops by myself and I saw something that compelled me to write. My wife, children, and dog are up north with our dear friends. I am...
It’s funny when I try to put myself in a stranger’s shoes and imagine what they must be thinking when I throw around the word ‘therapy’ so much. It seems that when people want to make plans with me, there’s always some sort of ‘therapy’ which dictates my schedule. But I don’t specify, I just...
I’ve been experimenting lately to gauge Grace’s understanding of things. My favourite (and the most successful) has been ‘the bottle test’. I’ll place her bottle somewhere in the room (even in a place nearly out of sight) and say, “Grace I’m just putting your bottle over here.” Then I’ll go about my regular things like...
It’s been a while since I last posted. I’m a professional blogger and my ‘daytime job’ blog has been taking up all my brain power. You know what I’ve been thinking lately, though…how unfair ‘the system’ is with their expectations of us special parents. For instance…most people in society and in government find it completely...
