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, 28 February 2012

busy days

Yesterday Isaac had his feet measured and he needs the next size up piedro boots.  I had a scary conversation with someone who's child has hypermobility about as severely as Isaac.  Her son dislocates his joints which Isaac doesn't and I thought he wouldn't do but she told me that her son wasn't dislocating at Isaac's age, he started at 5 years old.  There are times like this when I feel scared for his future.  Then today a lady came to the breastfeeding group with her 2nd baby who had been going when Isaac was tiny.  She asked how Isaac was, if he still had his feeding tube?  He has come a long way in his short life.

Isaac had his assessment by the lady from the PIM's team (Physical Impairment Medical I think) at preschool.  I stayed and watched.  There wasn't any difference physically between him and the youngest children and he walked up the steps to the slide which he doesn't normally do at home.  He went to sleep for 2 hours leaving me wondering how he will cope with a full day at school and if not how will I cope with walking into wellington and back 3 times a day.

Malachi was weighed today and had lost a tiny bit from last weigh in but gained from the last weigh in on those scales at that time of day.  I suggested that I increase Malachi's infatrini again but the community nurse was reluctant to suggest that without approval from a paed so I have increased the infatrini back to 2 bottles a day and I need to phone Nicola tomorrow to tell her.  We seem to have developed a pattern of Malachi gains weight, infatrini gets dropped/reduced, Malachi loses weight, infatrini increased over and over again.  This time I will keep him on the increased dose for longer.  For those who are interested Malachi now weighs 7.34kg which is 18lb 3oz if I remember rightly.

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