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.

More doing, less typing

I often find the busier we are, the less I blog.  We are plodding along as usual, trying to fit in nice educational activities in between appointments, feeding and pumping.

 

The gorgeous Ezekiel is now 5 months old and weighs 12lb.  His list of problems that appears on every letter we get from Nicola gets a bit bigger each time.  We now have a date for the first surgery (3rd December) and he is having his repeat MRI scan this week.

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.