Isaac is 4

From this tiny newborn...

...To this 4 year old.

Still can't work out how to turn pictures round!  So much has happened in the last 4 years.  I have learnt to trust my motherly instinct, to feed a baby via nasogastric tube, to always bring a book to hospital appointments, to always bring a quilt when staying in hospital, that my husband can drive as fast as an ambulance, that a buggy with a 4 year old and a 1 year old in is heavy, that an adult with a baby on her lap can go very fast down the big blue slide at softplay, that I can cope with more than I think, that I can breastfeed a baby with low muscle tone, that portage is amazing, that Isaac can do most things with a bit of help.

While I was trawling through facebook to find my then and now photos I also found this one of Jeremiah aged 2 and Isaac aged 3 months.

They look so different but the expressions on their faces are the same as now.

In other news, Isaac has his school place at St Johns where Jeremiah goes.  We have 2 occupational therapists and no wheelchair assessment.  But we are slowly moving forward.  He is going to be in a class of 23 they think with 4-6 children who have special needs.  Jeremiah's year group has 16 children in so they will probably be split up into mixed age classes again.



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.