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, 24 September 2013

Latest news

We were at the hospital 3 times in the last fortnight.  Ezekiel's hip ultrasound went really well.  His shallow hip socket has sorted itself so no need for treatment.  Malachi has new piedro boots on order.

Isaac had his eye appointment last week.  His operation in June wasn't successful, probably due to his hypermobility so he needs more surgery in October.  Until then he has to wear an eye patch for 3 hours a day.

The bathroom is finally finished.  We have a shower that works and a toilet that doesn't leak!  Next job - fixing the guttering.

Ezekiel currently weighs 4.7kg which is about 10lb 5oz.  We are currently feeding him every 3 hours, which usually involves waking him up to feed and him taking a long time to finish the bottle.  This usually means I have about an hour to get some housework done and play with Malachi before it's time to express and feed again.  I am going to the baby clinic to get him weighed now which is good in a way as I can go when it suits me which doesn't happen so much with home visits.  On the downside we often end up seeing a health visitor who doesn't know Ezekiel and who tries to make "helpful" suggestions when I hadn't actually asked a question.

Although we've had a lot of comments from adults about Ezekiel's lip, some positive, others not so much, children seem to not notice, or not comment anyway.  One of the children In Isaac's class was talking about it yesterday at the end of school and Isaac's friend interrupted him saying "but he's cute and we love him".  Sums it up perfectly and made me smile. 

Lastly I haven't got a date for Ezekiel's first operation.  I'm trying not to think about it which isn't helped by people constantly asking.

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