Malachi and physio

Malachi had his physio session on Wednesday.  We nearly didn't make it thanks to the bus we needed to catch being a double decker.  The physio was really pleased with his progress and thinks he will be walking in the summer.  I sometimes feel that I don't take Malachi's issues seriously enough because he is not as bad as Isaac so it was good to know that he really was doing well and it wasn't just me thinking that.  He is into everything at the moment, trying to nose dive off the changing mat and will crawl towards an open stairgate at the speed of light.

The physio wants Malachi to have piedro boots but his feet are so tiny they don't make them small enough.  He is being referred to orthotics anyway to see if they can suggest anything.  She also remembered Isaac which I thought was impressive seeing as she last saw Isaac at 5 months old.  She said nobody could forget Isaac but I'm not sure if that's a good thing or not!

Isaac has a GP appointment next week to be referred to the orthopaedic team to sort out shoes for him to wear for PE at school.  Then occupational therapy to measure him for a chair.  Jeremiah is doing well.  They had a supply teacher yesterday who brought his guitar which was very popular with the class.  Even the little girl who has autism and doesn't do change well really liked him.

All about Isaac

As Isaac gets ready to start school things seem to be all about him at the moment.  We seem to have more and more appointments and different proffessionals are getting involved.  We are still waiting rather impatiently for an appointment with wheelchair services.  Isaac's friend has just got a wheelchair and Isaac had a go in it last week.  It was so much easier to push than the buggy and Isaac could wheel himself a little way too.

Today I talked to the SENCO at school about Isaac going part time.  He is going to start off going Monday, Wednesday and Friday mornings.  I took him to the disabled toilet at school today but he couldn't manage it himself.  He keeps saying it's his toilet and he wants to visit it every day.  He is doing really well with the potty training and has been dry for 4 days in a row.  It's a lot harder than when he was in nappies but I'm so proud of him for managing it.  He is at the stage when he wants to try out every toilet when we are out so the time in between picking him up from preschool and picking Jeremiah up from school is quickly filled up with a toilet tour of Wellington!  Isaac has been going to preschool all day on Thursdays as well as Tuesday mornings since Easter.  He is enjoying it but he is absolutely shattered afterwards.

I will try and blog about Jeremiah and Malachi next time.

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.



Isaac and school

I have no idea how to turn this picture round!  Isaac is starting school this September.  So a few weeks ago we had a school entry plan meeting.  Well, Simon went to the meeting.  Isaac was sick the night before so I stayed at home with him, Malachi and a mountain of washing.  We are now waiting for assessments from OT and wheelchair services.  This week we have started potty training which has been difficult because Isaac struggles to get on and off the potty by himself.  Not sure how they are going to manage that at school.

We have the long awaited genetics appointment tomorrow.  The letter says we will be in there for 2 hours.  Jeremiah and Isaac have been bribed with a trip to the park afterwards if they have been good.

3 months

How very softly you tiptoed into our world.
Almost silently.
Only a moment you stayed.
But what an imprint your tiny footprints have left upon our hearts.

Photos

At Great Grandad's birthday party

The new park on our way home from school has just opened.  We've been twice and I've tried to take photos of Isaac on the swing without much success!

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.