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.

Sunday, 26 February 2012

Long time, no blog

This week we have been walking to school.  Every time we do this I'm amazed at the amount of money we don't save.  The buggy has needed 2 new inner tubes which cost £20.  Tomorrow Isaac has a hospital appointment which will cost us £9 in bus fares.  The weekly tickets would have cost us £33 pounds so we have saved a grand total of £4.  Oh dear.  Hopefully we will soon be fitter as a result, at the moment I think we are all just tired.

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.

Saturday, 11 February 2012

Half term

Today is the first day of half term.  We have a broken mobile phone, broken down freezer and a broken down car but at least school and preschool have finished for 10 days.  Half way through the school year already.  Isaac has struggled through the last week or so and has had a nap in the afternoon more often than not.  It's times like this that I worry about how he will manage school in September.  Jeremiah is doing really well at school although he is not impressed that there is no playing in the morning anymore.  The teacher told me that he is so good at getting on with his work on his own.  Can this be the same child who I have to nag to get ready for school in the morning?

Wednesday, 8 February 2012

Elisha's burial

Elisha's blanket

Flowers before I rearranged them into something smaller

Finished flowers