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.

Wednesday, 5 October 2011

Back to the hospital

On Monday we went back to the hospital to see Nicola and the physio.  Jeremiah was off school with a cold and a bit of a temperature and Simon is on holiday from work this week so all 5 of us ended up going.  Nicola was running late so we had 40 mins in the waiting room (thank goodness the boys love it there because there are loads of toys.  Malachi was weighed and measured (7.3kg 67cm).  We saw the physio who said that he has made some progress but he has dropped off the physical development chart again.  She gave us some more exercises to do with Malachi.

We then saw Nicola who was really pleased with his progress and she said we could try weaning him off the drugs when he gets to 8kg.  She also sorted out the microarray test.  Isaac needed his done in paediatrics so they sent us down to CAU.  There was a long wait there so we got sent back down to peadiatric outpatients.  Simon took Isaac in to have his blood taken and I could hear him screaming from the waiting room.  I just hope they got all the blood they needed this time.  We had to go to the phlebotomy department at the other end of the hospital for ours and I didn't fancy carrying Malachi, the changing bag and my handbag all that way so Simon went to get the buggy from the car.  Simon had his blood taken no problem but after 2 goes and wiggling the needle around (ouch) they couldn't get mine so I have to go back today when the head phlebotomist is in as she used to do all my pregnancy blood tests.

Yesterday Malachi and I went to the breastfeeding group and the hv told us I couldn't bring Isaac from next week as they are changing it to non walking babies only.  I'm not impressed I have to say.  I'm going to ask the preschool if we can change Isaac's sessions so I can still go.

Yesterday afternoon Isaac's OT came round.  She said she couldn't take the highchair, we have to wait for medequip to come and get it.  She also said she couldn't discharge him without checking with her supervisor first.

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