Life in the slow lane!

More from my gorgeous daughter’s struggle with the little known chromosome inbalance Trisomy9



Following Dixie’s hospital discharge in early March, we collected a couple of professionals to add to our ever growing list.

Her surgeon. Although we wouldn’t have regular appointments, we were due to see her as an out patient three months later. The plan was also to remove the temporary gastrostomy that had been placed during surgery as an anchor to her stomach.

We also picked up a lovely community nurse. Her role was to support us in the home with the up keep of the gastrostomy button,  to keep an eye on her incision site and monitor her weight and general well being. Another temporary support, but one I welcomed. I’m squeamish. And a bit pathetic  with all things woundy, bleedy and gooey.

The gastrostomy site needed quite a bit of looking after in the beginning. And as an added surgery extra that I hadn’t expected, I found it difficult…

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