and we came home (a week later, with instructions not to travel over Christmas) with home oxygen, an oxygen saturation monitor, a suction machine, an NG tube, a feeding pump, a diagnosis of seizures, and dates for two lots of surgery! It was a lot to take in.

Life never returned to how it was before. In the subsequent year, we had numerous hospital admissions, ambulances, tests and appointments. Her list of medical complications grew, and her care became more complex.

However, between April 2015 and August 2015, she seemed quite stable. She was tolerating her spinal brace, her reflux and chest infections had reduced when her feed was changed to a jejostomy feed, her recurrent UTIs reduced with prophylactic antibitoics, her seizures were well controlled unless she had anmummy.

Tuesday, 24 November 2015

The last couple of months have heralded a new start for Jess. One that should, hopefully, make such a massive difference to the quality of her life.

In October, I went on two courses. One was run by Rett Education UK, and the other (a two day course) was run by Rett University. Both courses were presented by the amazing Susan Norwell, who runs Rett University, and were focused on teaching our Rett girls to communicate, read and write.

There was so much information presented on these courses, and at times I felt very overwhelmed - both at the steep learning curve ahead for me and Jess, and also the sense of responsibility of wanting to make sure we do the best for Jess, and give her