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.

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.

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?