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.



Monday, 4 July 2016

Operation 11

Operation 11 happened on Friday.  We tried giving Ezekiel a pre-med this time which helped quite a bit.  He was still upset but not as bad as he normally is.  He slept for a long time afterwards though so I need to remember that for next time and be prepared to come home very late.  They took off 25mls of CSF which is about average for him.

There has been a big difference in Ezekiel's headaches since his latest lumbar puncture.  He is quite traumatized though, I think a few chilled out days at home are needed.

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