acacia

Great days out but something isn’t right tonight

If only road miles were a thing, like air miles. We’d definitely be earning enough to hit the gold tier on the ‘in patient’ scale. The reward – a regular trip to reality. The last few days we have been home three times during the day, and today we accomplished a 45 minute drive toContinueContinue reading “Great days out but something isn’t right tonight”

Having a loopogram and using a baby carrier when your baby has a stoma

We’ve had nothing but stoma troubles for the last week – I’ve replaced more ostomy bags than I have eaten meals in a day. A couple days ago, we replaced six bags in one day. Looking back now, I’m not sure why it was so many. I think it was since we started recycling intestinalContinueContinue reading “Having a loopogram and using a baby carrier when your baby has a stoma”

Stoma: saving the skin

The biggest challenge with Clara’s stoma has been trying to protect her skin. Because Clara only has a small amount of gut remaining, it was a fine balance between using enough gut to make a raised stoma and saving as much as possible for reconnection. An ileostomy bag should fit neatly over a stoma, stuckContinueContinue reading “Stoma: saving the skin”

Charity Quiz Night

I had this great idea, only weeks back, that I wanted to host a fundraising evening. My brother George had raised a huge amount in aid of his cycle ride from the Children’s Hospital to Paris – he did so well! But I knew we could help even more if I could come up withContinueContinue reading “Charity Quiz Night”

Caring for a baby with a stoma

I’d heard of a stoma, but I’d never seen one let alone cared for one. I’d certainly never even considered a baby might need one. Surprisingly, the majority of stomas in childhood are formed on babies – in fact, 1 in 10 need one. Clara’s stoma is an ileostomy. The ileum is the last sectionContinueContinue reading “Caring for a baby with a stoma”