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A friend stopped me on the street. The daughter of her friend had been admitted to the hospital with stroke-like symptoms. When the nurse asked the girl to walk across the examination room the six-year-old couldn’t do it without stumbling. Did I have any advice? Despite all the planned – and unplanned – time I’ve … Continue reading
“You don’t know how to do this, so I’ll help you,” the voice said to me over the phone. “I’m helping you because you’ve never done this, dear. Next year, you’ll start earlier.” OK, I admit my pride bristled at the tone and the assumption that I didn’t know what I was doing. Unfortunately, the … Continue reading
I celebrated an anniversary last week. With the end of summer and the start of school, the actual date passed me by. It’s been a year since I started writing this blog. When I began writing, I wasn’t sure where this was going to lead me. I did it because, after years writing about politics, … Continue reading
This is more like summer!
It seemed like a good idea at the time; We’d all go to family camp to get Deane familiar so that he might be able to go on his own next summer. Good theory. But not all theories work out in practice. Deane had been to camp with Dad a couple of years ago and … Continue reading
Seven days. Three hospitals. Four NG tubes.. Nine insertion attempts. Two tubes thrown up. Three different tube styles. Four different tape jobs. Seventeen and a half hours in waiting rooms. One patient, stoic kid. And this morning, day 10, he threw up the tube again. This wasn’t what we had in mind when we said … Continue reading
Sleep is an invaluable commodity. Every parent knows the value of a good night’s sleep and the cost of a miserably disrupted night. For most parents, the majority of sleepless nights are during their children’s early years. Kids generally grow into a routine of sleeping that allows parents to get at least enough sleep to … Continue reading
The challenge is how to avoid being overwhelmed by the medical side of Deane’s new schedule when he wants to spend all summer in the boat? Hang the IV bag in the boat. Once again, we have to remember that if we act normal and many things become normal.
I have written that my fear about my son getting a g tube was that it would medicalize him (The weight crisis in my house). I didn’t want our world to be filled with IV poles, drip bags and plastic tubing. With his current, NG tube it also involves an omnipresent stethoscope and syringe to … Continue reading
The last week was hard: Figuring out Deane non-stop ingesting schedule; Having Deane home because high schools finish a week early; Having our intake meeting with the government agency that has funded the personal support worker who has been feeding Deane dinner since March; Getting those services transferred up to our cottage and endless struggles … Continue reading
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