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.

Saturday, 12 September 2015

Properly introducing Zechariah

With all the problems with uploading photos I never did this when he was born.  So here is my very belated birth announcement for Zechariah.

Zechariah Joseph was born on 13th June 2014 at 1:53 am, 3 weeks early.  My waters broke at 35+3 and I developed an infection at 36+5.  I was induced, but for various reasons it failed and Zechariah was born by cat 1 emergency section 5 hours later.

He was very poorly at birth, mainly because of his prematurity.

And this is him now, aged nearly 15 months.

Wednesday, 12 August 2015

Summer holidays

Finally whatever happened to stop me uploading photos has resolved itself.  We're now halfway through the summer holidays.  Jeremiah is on his way home from Scotland after climbing ben nevis.  Isaac is mostly resting and refuelling ready to start year 3 in September.  Malachi is excited about starting school.  Ezekiel has had 5 lumbar punctures and 3 MRI scans so far and still no further forward than we were at the beginning.  Zechariah is crawling and generally getting into everything.

Saturday, 7 February 2015

Still here, still plodding along

I haven't had much time to blog lately.  5 boys keep me busy and with Simon working from home a lot lately I'm struggling to get on the computer.  Jeremiah is much the same, still interested in weird facts and lego.  Isaac has lost his first tooth, making more friends at school and desperately trying to keep up with them.  Malachi is now fully toilet trained in the day and still causing chaos.  Ezekiel is his usual happy self.  Zechariah is just plodding along, meeting milestones a bit later than average but getting there in the end.

Saturday, 28 June 2014

There is no "m" in Zechariah

Introducing Zechariah Joseph, born on 13th June 2014 weighing 7lb 6oz.  Malachi insists he is called "Zechamiah", which has led to Isaac shouting "there is no m in Zechariah" on a regular basis!

Wednesday, 1 January 2014

2013, a year in pictures

2013 was an eventful year.  We started it with me 14 weeks pregnant with Ezekiel, Malachi not yet walking, Isaac struggling with part time school and Jeremiah much the same as he is now, but shorter!

Malachi contemplating the snow
Ezekiel in 4d
Ezekiel is born
and we spend the next 4 weeks going between him in special care and the others at home
Meanwhile, Jeremiah and Isaac both win bronze medals at sports day
Ezekiel comes home, just in time for Jeremiah's birthday
We spend the summer holidays mostly at home, doing various things
We go on holiday to Wales where Jeremiah climbs Snowdon

I try to take as many photos of Ezekiel as I can

Ezekiel has his first operation
Happy 2014 everyone

Saturday, 7 December 2013

Ezekiel's new smile

On Monday Jeremiah Isaac and Malachi went off to Simon's Mum and Dad's house.  At the ridiculous hour of 5:30am on Tuesday me, Simon and Ezekiel set off for Bristol.  After some waiting around we were shown up to the ward and before I had time to get nervous Ezekiel was weighed, name tagged and gowned up.  The anaesthetist came round to see us and so did the surgeon.  Simon signed the consent form and the phone call came to say that they were ready for him in theatre.  The nurses pushed Ezekiel the short distance to theatre in his cot with Simon and I trailing behind.  Simon held him while he was put to sleep and then we both kissed him goodbye. 

We then had 3 hours before he would be finished so for the first time since Ezekiel was in special care we were on our own.  I wanted to get out of the hospital so after giving the nurses our mobile numbers we went off.  We had a mcdonalds breakfast and then went to asda.  We went back to the hospital and got the suitcase out of the car.  We still had a while to go so we went off to the restaurant which was bigger than I remembered and had a drink.  We went back to the ward and waited.  A magician came round to entertain the children so we watched that and waited some more.  Finally a nurse came and said that he was out and in recovery but they were struggling to wake him up so he would be moving to HDU.  So we moved the buggy and suitcase to HDU and went off to recovery.

When we walked into recovery I was listening out for the sound of Ezekiel screaming but there was silence.  When we got to him he was being cuddled by a nurse and was still fast asleep.  The porter decided the best way of taking him back to the ward was for me to sit in a wheelchair and hold Ezekiel while the porter pushed.  So off we went and the nurse from recovery disconnected Ezekiel from the portable sats monitor and attached him to the big monitor in HDU.  I sat in the chair and cuddled Ezekiel thinking that 6 months previously I was also cuddling Ezekiel in HDU.

Simon went home at about 4pm and about an hour after that the dr came round and said Ezekiel was doing so well we could move out of HDU.  So off we went to Otter bay where we were sharing a room with 2 little girls.  At 8pm we were on the move again and this time we were in Starfish bay which was a bay with about 12 beds in and seemed to be where all the children who were in short term for operations were.  So most of them had been in theatre that day and Ezekiel was the only one who slept though the night.  Thankfully when the cleft nurse came round later that morning she said we could go home as soon as the medicines were sorted so at 2pm we were on our way home.  Big sighs of relief all round.

Next week Isaac is having his squint repaired.