No news is good news

Apologies for the long unintended silence from us.  The months have whizzed by and we haven’t updated you on Joey’s progress in ages.  Life, thankfully, has been good to us in recent months.  Once Joseph was fully recovered from his gastrostomy operation in February, we decided that we should try and go away together for short breaks whenever we could – we went to Paris in March for the ELA medical research meeting, then Ireland in April for my father’s 70th birthday party and we’ve had a few weekends away to touristy places in France with family and friends (Ardeche, Cap d’Agde, Auvergne).

Joseph has made lots of progress over the past few months; he’s had his first pony ride, his first back seat bike ride and he’s received his first trotter after getting the green light from his orthopaedic doctor – this has opened up a whole new world of exploration and discovery for him.  His level of body tone has improved, he’s holding his head very well and he can now, most of the time, turn spontaneously from side to side when lying down. On the not so positive side, he will need to start wearing glasses again as he has been increasingly twisting his eyes inwards, so we collect his new set of specs next week.

Joseph has had a busy few months with his weekly sessions of psycho-motor, physio, speech therapy and eye exercises and other various consultations with the neurologist, paediatrician and orthopaedic doctor. He has also added an occupational therapy session to his list of weekly exploits – the therapist has started exploring his ability to understand ’cause and effect’ by the use of a ‘switch’ or large contact button that activates toys when pressed.  He’s doing very well with this and is now trying to frantically press every item we put in front of him to see if it will come to life!  Adding something like these ‘inclusive technology switches’ to Joseph’s life will be great and may well reduce the amount of times we get screeched at to keep pressing the start button on a toy!

A few friends have recently asked us whether Joseph is talking yet or eating solids or feeding himself.  Globally speaking, nothing has really changed in terms of Joseph doing anything by himself like sitting up, crawling, standing, walking, talking, feeding etc. He still has very little motor control, for example, while he can grab something in front of him now (like my prize rose outside the front door), he will very rarely be able to do anything with the object he has picked up other than drop it again.  He can’t put it into his mouth or pass it from one hand to the other or hand it to someone.  Sometimes there are glimmers of improvement so we will keep stimulating him and hoping.

Joseph’s level of interest in his surroundings has improved and he is increasingly using his eyes and expressions to charm those around him, especially the ladies!  He is growing taller (84cm) and putting on weight (12kg), while both Matt’s and my biceps are getting bigger from lifting him. Despite Joseph’s global physical challenges, his determination and magical character never cease to amaze us and fill us with joy.

Fund-raising for the ELA and the Myelin Project UK continues.  As you know, we’ve had the Epic4Joe mountain bike adventure race in South Africa during March and the ELA football tournament here in Grenoble at the end of May, raising more than 2,600 GBP for the Myelin Project UK and 1,900 euros for the ELA respectively.  At the football tournament Joseph did the ‘fictive kick off’ for the final match and also had a trophy named after him, called: ‘The Joseph Swift Fair Play Cup’.   The transition year students of Mount Mercy College Cork in Ireland, raised 500 euros for the ELA in April with a two night musical called ‘Razzle Dazzle’, led by their Director; Mary Mulcahy and we’ve just heard and are extremely grateful that MMC would like to make this an annual fund-raising event for the ELA.  Joseph and I visited the girls when we were in Ireland and we spoke to the them about leukodystrophy and the ELA. Finally, Maria Dickenson recently ran in the 10km Dublin Women’s Mini Marathon and raised 951 GBP for the Myelin Project UK.  Thanks so much again to everyone for your continuing support.

Here are a few photos to summarise some of what’s been going on over the past few months:

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