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
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.
Sunday, 26 February 2012
On Tuesday someone is coming to observe Isaac in pre-school to decide how much help he will get at school. I'm going to stay while she does it so that I can tell her if he is having a good day or not. I'm looking forward to seeing him at preschool as normally I just drop him off and go.
The weather has been amazing for February and Jeremiah and Isaac have been playing in the garden. I will have to get some suncream!
Malachi has learnt to commando crawl and wave. Simon got the 6-9 month clothes down from the loft and it's been lovely dressing him in all his "new" outfits.