We were hoping for a white Christmas but the weather got really warm and wet, so sadly we could not introduce Joey to the Swift family’s passion for sledging. Even more frustrating was that the snow arrived in force the day after everyone left for England. Joey loves the snow (almost as much as daddy) especially leaping up and down in powder snow.

You’ll also see from the photo that we have discovered that Joey (again like his daddy) has an obsession with fire. We literally have to pin him down in order to prevent him from burning himself on candles. He’d stare at them for hours if he could!

Anyway, thank you everyone for your continued good wishes and support. Joseph has continued to make steady progress throughout 2009 and the signs are (fingers crossed) that he’ll continue to make progress in 2010.

Donation page update

We have just closed both our EUR and GBP Paypal accounts and will shortly forward the balances to their respective charities (ELA and Myelin Project UK). I could see very little point in keeping these accounts open since Paypal take a significant percentage (2-3%) commission and also do not automatically handle national charity related tax relief schemes (e.g. Gift Aid in the UK). I have updated the donation page so that the donation buttons now link directly to the ELA and Myelin Project UK donation pages.

If you would like to do your own fund-raising activity on behalf of Tri4Joe then please let me know. The ELA and Myelin Project UK have respectively AiderDonner and JustGiving accounts which can be used to construct your own fund-raising page which we can then link to and blog about on Tri4Joe. Contact us if you need any help.

Joseph celebrated his third birthday on Monday with us and his grand parents who had just arrived from Ireland. This was his first birthday where he understood the thrill of opening cards and presents (along with his parents!), so thank you to everyone that sent something.

The morning got off to a great start and a very positive experience: we were invited to represent the ELA families at an ELA dictation exercise at Joliot-Curie primary school in Echirolles (near Grenoble) with quadruple Beijing para-olympian gold medalist David Smetanine. Present also was a journalist and cameraman from France 3 and the event was later broadcast on the evening regional news (video)!

We were a bit nervous at first, not knowing how Joseph would react to all the over-excited 10 year-old children (we’ve noticed that he is very sensitive to high pitch squeals), and also how we would react as these events can be quite powerful emotionally. We all passed with flying colors – even when all the children made a special effort to sing “Happy Birthday” in English which was very moving.

The school children then had to compete against a select panel of parents to perform a “dictation” where they had to listen to David read out a passage about someone who is told that they have an incurable disease (e.g. leukodystrophy). They then find out that the illness is not incurable for any hard medical reasons, but due to economic reasons: the illness is too rare to be worth investing in research, and there is simply too little known about the illness for it to be treated or cured. From an objective point of view this viewpoint is understandable, but try explaining that to a sick child or their parents. Before having Joseph I would have always had this objective opinion, but secretly deep down inside I would hope that I would never be in a situation where I would have to test it. Well, call it fate, but we’re in that position, and the objective view on things doesn’t hold up. The subject of the dictation passage has the same experience and decides to do everything to fight the illness by putting on their trainers and running a race to raise money. This is a reference to the ELA’s “Mets Tes Baskets” (put on your trainers) fundraising campaign which all schools in France (and I imagine other countries where ELA has a presence) can participate.

While the dictation was taking place we sat and talked with many of the children. It’s incredible how intuitively sensitive young children are – they asked many questions and talked and held Joseph. Joseph was very relaxed and loved being the center of attention!

From my point of view the morning was something that we will remember for a long time, and I hope that it is something that the children will remember too. Our thanks go to the Joliot-Curie primary school in Echirolles, David Smetanine, and the ELA for organizing this event.

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:

We first heard about the tournament when AS Gresivaudan’s Thierry Pineau gave us a call after reading about Tri4Joe in the local Isere Magazine. His football club organized a similar event last year with huge success and raised well over 3000 Euros for ELA. Impressive, but perhaps more importantly, due to the nature of the event, they raised awareness of leukodystrophy throughout the region. In fact they received two full pages of coverage in the regional Dauphine Libere newspaper (personally I’m a big fan of this newspaper because it sponsors one of my favorite cycling races – the Criterium Dauphine).

Thierry is very keen to grow the tournament over the coming years and is particularly keen to attract teams from all over Europe. To that end, if you are reading this and know of any under-13 teams that may be interested in visiting a beautiful part of France to play in a football tournament in 2010 then please drop me an email (matthew dot swift at gmail dot com) or leave a comment here on the blog.

Thierry and, I imagine, the rest of his fellow club members are clearly very passionate about the event and its cause and have done a superb job organizing it. It never ceases to amaze me how many selfless and fundamentally good people there are out there. It’s days like this that I feel really humbled and it makes me realize how selfish and self-centered I was in my previous life before Joseph.

I’ll report back after the tournament and let you know how it went.

Thank you Thierry and everyone at AS Gresivaudan.

Thank you to everyone who has supported them. Together you have raised well over two thousand pounds for the Myelin Project UK. We really appreciate it.

It’s been very tough going in energy sapping temperatures of 40C. I’m exhausted just reading their daily reports.

In addition, they have managed to raise over 2200GBP so far. Awesome!

We’re going away this weekend to the ELA annual convention in Paris. Hopefully I’ll be able to get internet access at the hotel in order to keep you all posted on Mark and Dave’s progress. I apologize in advance if everything goes quiet over the next couple of days – you can always monitor their progress on the Cape Epic website.

Mark has been sending me updates via email so he must have internet access. The race can’t be that hard if there’s internet access at each stage finish! I had images of them finishing exhausted and then having hunt down their own food while fighting off lions and other savage creatures – not fighting over network cables!

Since Mark’s updates make great reading (so far anyway – may be they’ll get shorter as he gets more tired?!), I am loathed to lose them amongst other blog posts. To that end, I have created a separate page where I have cut and pasted his messages word for word. You can access the page easily from the Epic4Joe Diary menu option at the top of the page. I will update this page every day as I receive Mark’s messages so make sure to come back regularly and take a look.

For those of you not familiar with this race, there is full coverage of the event on Cycling News. I learned an interesting bit of trivia there: the Cape Epic is categorized as a “Hors Categorie” event by the UCI (cycling’s World governing body). It is the only mountain bike event in the World to have this status which is the same status as the Tour de France! So, if you haven’t done so yet, go and sponsor them – they deserve it.

Come back to the blog over the next few days to see how they are getting on. Mark has promised to send me a status report each day if he a) has network coverage and b) is physically capable of typing an SMS!

Joseph’s tummy wound has closed up loads and now only leaks a small amount which is much more managable: the acid dries up before it does any harm. Our weekend break in the Ardeche went well and our good luck continued (long may it continue!) – the weather was superb (24C) and the fresh air, change of scenery, sunshine, and great company (thanks Guy and Helyn) was a great tonic for all of us.

Joseph loved his break – he got to meet lots of animals. The place we stayed in had chickens and sheep and some very imaginative children who claimed that there were dinosaur and monster (as if dinosaurs weren’t scary enough) fossils everywhere. He also got to sit next to Bob the Builder’s tractor – well that’s what Joseph thought at least. He was delighted.

Since the weekend break, Joseph’s started back at physio and we’ve felt confident enough to try him out in his trotter again. The really good news is that, despite almost six weeks of very little physical activity he does not seem to have regressed. In fact, in some ways I think that he is stronger than before.

Yesterday we had our final checkup at the hospital where the good news continued: the doctor was pleased with Joseph’s progress and gave us the all clear. We only need to go back every six months or so to change his tube. The hospital visit was not without trauma as per usual. Before we could see the doctor, Joseph had to have an x-ray showing his swallowing and stomach as it processed liquid. Joseph had to be kept still for this so they strapped him to a wooden board – and when I say “strapped” I really mean it! He looked like an Egyption Mummy poor thing.

Nevertheless, Joseph thought that it was great fun! He particularly liked the bit where they spun him upside down in order to get different views. The only traumatic bit was when they inserted the nasal tube to put the liquid in – it’s everyone’s nightmare: trapped and unable to move while someone sticks something up your nose. Yuck. I’m not surprised Joseph is still waking up at night screaming. Hopefully this should improve over the next few days.

The truth is, unfortunately, that he’s is only recovering very slowly. In fact, there are times when we look at his tummy with its scars and tube sticking out and wonder what we’ve done to our beautiful little boy.

It’s now well over a month since his operation and we’ve had several emergency trips back to hospital (three in one week!) in order to fix leakages and the resulting skin damage caused by stomach acid burns. We have a nurse who comes to our house every day to dress his wound which takes some of the pressure off of us.

Every night Joseph wakes up screaming at some point – he was howling from 1am to 6am the other night, although I think that quite a bit of this “performance” was more cinema than reality TV.

On the plus side, Joseph’s face is much better now without his nasal tube and his breathing is better since his airways are not irritated. He also suffers a lot less from trapped wind.

It’s been an especially difficult month for Colette who has been more or less trapped at home and unable to have much of a life (at least I can get distracted by work). We’ve had to stop all of Joseph’s routine (physio, etc) because he is too fragile. In addition, he has not been able to do anything physical at home so he has regressed a lot physically – I think it’ll be a long time before we see him “walking” in his trotter again. I think that part of the reason why Joseph is awake so much at night is a result of his lack of exercise.

We have had some fantastic support recently. Our friend Mary-Anne flew over from the UK to spend a long weekend with us (as if she didn’t have enough on her plate with triplets to look after!). We also had Colette’s Aunty Joan here with us last week over from Ireland who is, as always, a huge moral support and thoroughly spoils Joseph and Colette.

We’re off to the Ardeche this weekend with our friends Guy and Helyn. We can’t wait for a well deserved few days break away from home.

I’ll try and be a bit better at updating our blog over the next few weeks. We’ll have plenty to talk about: Joseph’s continued recovery, Mark and Dave’s progress at the Cape Epic, and last but not least, a weekend with the ELA at the end of the month which, we recently found out, Professor Yanick Crow is going to attend!