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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
I was calm as they said my son was aspirating food and liquids. I was calm as they recommended a g tube and an immediate NG tube. The experts at the swallow clinic had built an irrefutable case. They had just watched Deane eat solids – fairly runny mashed potatoes – drink liquids and eat … Continue reading
I can’t remember when Deane got his first pair of ankle-foot orthotics. He was small. The first ones fit easily in my hand. As he grew, we kept the old ones. They were too personal to throw away. Last week, Deane got his eighth pair and finally there was a suitable solution for the old … Continue reading
Google Hangout on raising special needs kids Check out my conversation with blogger Lisa Thornbury (Forever in Mom Genes) and Katrina Carefoot who blogs at Fickle Feline about the challenges and joys of raising children with special needs hosted by iVillage.ca. It was a great exchange of ideas and experiences.
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