I'm Sophie, married to Simon and mum to Jeremiah (10), Isaac (8), Malachi (5), Ezekiel (3) and Zechariah (2). Also our 2 little ones in heaven, Eleanor (2005) and Elisha (2011).

Jeremiah has Autism.


Isaac has hypermobility syndrome/Ehlers Danlos type 3 and uses a wheelchair for anything other than very short distances.

Malachi has hypermobility and wears piedro boots to support his ankles

Ezekiel has a cleft palate, hydrocephalus, hypotonia and development delay

Zechariah was born with sepsis and has mild development delay.



Tuesday 4 September 2012

Orthotics, a party, EDS awareness and going back to school

It's been a very busy 2 days for us.  Yesterday Isaac had his orthotics appointment.  We were late because the bus driver refused to let us on because there was a buggy in the wheelchair space.  Don't get me started on that.  The orthopaedic surgeon has decided that piedro boots aren't giving him enough support so he needs inserts in his piedro boots.  When he does pe at school the teaching assistant will take the inserts out of his piedro boots and put them in his plimsoles.

On our way out Jeremiah noticed a sign about a party and free cake.  It was the hospital's 70th birthday and there were lots of 1940's themed stuff going on.  A journalist came and interviewed Isaac and Jeremiah and took photos. http://www.tauntonpeople.co.uk/Musgrove-Park-Hospital-throws-40s-themed-birthday/story-16813667-detail/story.html - this is the story.  http://www.tauntonpeople.co.uk/pictures/Musgrove-Park-Hospital-Taunton-70th-birthday-bash/pictures-16813628-detail/pictures.html - these are the pictures.

Maddy's campaign has spread further.  She won the Pride of Australia award and appeared on television as well.  http://au.news.yahoo.com/today-tonight/health/article/-/14753623/maddisons-disease.  She asks that everyone google Ehlers Danlos syndrome and read about it for 5 minutes.

Today both the big boys went to school.  Malachi and I were nearly late, thanks to the bus, but we got there on time.  Jeremiah went in without a backward glance and Isaac had to be prized off my leg.  He had a good day though, he is absolutely shattered now.  Pictures tomorrow hopefully.

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