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A – very – little shut eye

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

Making it work

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.

Welcome to the system

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

With a lot of help …

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