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.



Sunday 21 July 2013

A busy week

Last week my mum and dad were staying so I decided to get some appointments out of the way while I had the chance to leave Malachi with my mum and be chauffeured around by my dad.

On Sunday, Isaac had a birthday party to go to.  Unfortunately I hadn't realised it would be a disco and I'd also forgotten to bring his ear defenders so it was a bit of a disaster and after 45 minutes of Isaac refusing to go more than a few yards away from the entrance we gave up and took him home.  I did get to show off Ezekiel though which was good.

On Monday, Ezekiel had an appointment with audiology followed by another one with Nicola.  He passed the first hearing test.  When it came to the second test there was too much interference so we need to go back next month for another go.  As I was coming out of Audiology I ran into the chaplain who conducted Elisha's funeral.  It was so lovely to see her again and to show her Ezekiel.  Then we went to see Nicola and Julia, the dietician.  They were both really pleased with Ezekiel's progress.  Nicola is going to keep an eye on his weight gain, muscle tone, clicky hip and head size (basically everything except his cleft lip and palate).  Ezekiel's results of his initial genetics tests have come back normal and Nicola also explained why Ezekiel needed CPAP after really good apgar scores.  Basically, the apgar scores show a baby's condition in the few minutes before birth.  So Isaac, who had an initial apgar score of 5 was distressed in the last few minutes of labour but recovered quickly.  Ezekiel was perfectly fine before he was taken out but after 30ish minutes of being born, his lungs got tired and he needed some help.

Will update on the rest of the week tomorrow.

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