One day at a time

On Monday, Joseph enjoyed playing with a big blue balloon at the psychomotricienne’s, whilst I had a bit of a moan about not coping very well with complete strangers asking me what’s wrong with Joseph.  I don’t want to be rude, but there are days when you just want to do your shopping in peace and not be constantly reminded or have to talk about something that saddens you, least of all to a perfect stranger.  I’m still trying to work out what to say or not say.   One word of advice has been to pretend that I don’t speak French – one advantage of being a foreigner here!

Working with small itemsTuesday was physio where Joseph worked really hard (I know how much effort he’s putting in by how much his head trembles) to reach and pick up small toys put at different distances in front of him.  He got very frustrated when he tried to do the same with his left hand. Joseph’s corset seat was also altered to give him more freedom to move his arms, and at the head piece to improve the support to his head position.

Creche team at St HilaireJoseph had his creche summer party on Tuesday evening. He had to say goodbye to some of his new found friends as all the 3 years olds will be starting big school in September.  Joseph started going to the local Creche about 3 months ago and he goes there for 2.5 hours once a week.  This is a great boost for him (and me) as he gets to do some ‘normal’ things and spend some time with other children which he loves.  We are very grateful to the creche for taking him on as one of the staff has to give him one to one attention at all times.  Joseph loves going as he beams a smile whenever I take him in the door. He has lots of friends, especially one little girl called Orphely who is very happy sitting next to him and stroking his hand.

Hand Eye ExercisesJoseph had his eye exercises appointment yesterday morning.  This session was spent trying to get Joseph to keep looking at whatever object was in his hand.  He tends to put so much effort into reaching for a toy that when he finally gets his hand to it, he either doesn’t know what to do with his hand – the toy will either fall out of his hand immediately – or he won’t realise/forgets that there is something in his hand.  I look at other children in awe when they can just pick something up with ease.

This morning we met a geneticist and a psychologist at our local hospital.  I think I’ll let Matt explain the whole genetics thing in another post as it goes over my head a bit.  All I know is that both Matt and I are carriers of the gene that has caused Joseph to have his form of Leukodystrophy.  There is a one in four chance of it happening again if we tried for another child.  As the gene is known, it looks like there are possibilities for various tests, which is a positive.  Neither of the options are straightforward though, so we have a lot to think about.

This afternoon, Joseph had his check up with the pediatritian – his lungs sound fine (which is a relief as he coughs a lot at night due to saliva going down the wrong way), his head circumference has grown half a centimetre in 7 weeks which is good news too as up until today his head was measuring the same since last June.  He is the same weight (11kg/24lb) and the same height (77.5cm) since the end of May.

Matt took the day off yesterday to do his final big brick session.  He did 3hrs on the bike at a good pace, despite lots of cross winds. 14km into his run he called me on the mobile to say that he was going to call it a day as he hadn’t felt recovered yet from his last big training session at the weekend.  I was glad really as I think he’s done all the hard work and it’s time to get lots of rest over the next couple of weeks so that he’s as fresh as he can be for the start line in Zurich.  He’s done so well (I don’t often praise his training techniques!).  I think he’s ready.  I’ll try and make sure that he looks after himself and puts his feet up a bit over the next week or so (the 2 metre long ‘DIY to do list’ comes out first thing on the 14 July!).

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