Blog

It is nearly 4 years since Harriet was last seen by the genetics consultant Dr. Mohnish Suri and his team, at the Nottingham City Hospital. Back then we thought genetic counselling was simply talking about living with a child that had some unknown genetic or undiagnosed condition, but we quickly realised...

After Harriet`s massive seizure in October, we were concerned that Harriet was now facing a life threatening seizures without having any sort of plan in place.A few weeks past and Harriet had a fourth seizure; we administered the Buccolam Midazolam, which controlled the seizure while we called for the ambulance. The...

A few weeks after Harriet`s first ever seizure , we met with the neurologist, Dr. William Whitehouse and some of the consultants from the Derby Royal Hospital, who talked about Harriet and to some extent the seizure she had at the end of June. The consultants felt this was an isolated...

It was just after 5.00 am on Saturday 29th June 2013, when Harriet`s Saturation monitor alarmed, at a glance I could see that her oxygen levels were dropping and quickly went over to find out what was wrong. Initially I noticed that Harriet had alot of mouth and tracheostomy secretions, which...

In late November 2012 we went to see the respiratory professor Harish Vyas, at the Queen`s Medical Centre in Nottingham, with Harriet.  We were concerned that Harriet was going to struggle to make it through another winter and that we needed some sort of emergency respiratory plan, should Harriet start to...

Harriet had been referred to the Occupational therapy team at the Derby Royal Hospital for hand splints, due the severe problems she was experiencing with both her hands over a number of years.It seemed that Harriet`s care had not been as smooth as it could have been and without the intervention...