cerebral palsy

This tag is associated with 14 posts

Growing up by appointment

“You are doing really well.” The words hung in the room. I wasn’t sure how to respond. It was a rather unexpected comment as the doctor was getting up to leave. It was the end of a three hour clinic visit – my son’s last clinic visit at the pediatric rehab hospital where he’s been … Continue reading

Unexpectedly moved

I’m not a weeper. I rarely cry at movies. Kind, thoughtful actions don’t send my ducts into overdrive. I leave weddings dry-eyed. But, in the midst of a conference about science and cerebral palsy, I found tears leaking out under my glasses. I hadn’t heard a great medical break through, it was a song dedicated … Continue reading

Where people know your name

Sometimes you want to go  Where everybody knows your name, and they’re always glad you came. For people of a certain age, these lyrics immediately conjure up the TV show Cheers and an overweight man walking into the bar to be greeted by the staff shouting his name. Reminiscing about eighties TV shows is not my … Continue reading

Gone tubing

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

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.

Hard to swallow

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

These braces were made for walking…

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

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  It was a great exchange of ideas and experiences.

The confusing world of charting weight gain

Deane’s weight is so far below the curve on a standard growth chart that it is unmeasurable. No wonder the dietitian is giving me ultimatums. It is very distressing when the doctor points to a spot inches below the sweeping curve of normal weight for 14 year olds. But what I’ve found out on our … Continue reading