Justin Update - 26th December 2012

The last couple of months have been a period of transition for Justin. During his time at Broomfield and at Northwick Park hospital, he had been undergoing extensive assessments and evaluation. If I were to be truly honest, I was hoping, or even expecting, that Justin would make greater improvements than he has done. That's not to say that there has been no progress, in fact far from it, he beat me at Connect 4 the other day then we had a little a sing-a-long to LA woman by the Doors. But the reality is that he still has a long long way to go in all areas, physical, emotional, behavioural, memory etc.

There has been some complications too, on entering Northwick Park Hospital Regional Rehab Unit one month ago, a routine blood test detected a bacteria that is resistant to all known antibiotics. Whilst this is not causing Justin any known problems, tight infection control at the hospital has meant that he's had to remain in isolation the whole time. This has really limited his rehab, especially his physiotherapy as he's been unable to leave his room and use the gym facilities or interact with anyone outside of the visitors that are allowed in his room. We also feel that this has had an adverse effect on his behaviour, staring at the same 4 walls 24 hours a day is enough to send anyone mad.

But it's not all doom and gloom, despite the setbacks, I feel there has been some breakthroughs too. Up until recently, Justin rejected any suggestion of listening to music. Now he is happy to and even chooses the artist or album that he wants to hear, with a bit of guess work on our part. He will even put his arm in the air to sound of his own mixes, thats my boy! There has been improvements in his communication too. He can read remarkably well, two, three word sentences on a good day, names and places, object recognition have all improved too. These are all positive signs and bode well according to his speech and language therapist. We bought Justin an iPad so that he can listen to music, look at photos, watch movies and even check his Facebook when he's ready. It has come in really useful for writing as he finds it easier to write with his finger as opposed to using a pen or pencil. Baring in mind he is using his left hand (he's right handed), he has managed to write several words, some random, some prompted, mostly his own and Brookland's name but nonetheless, readable letters and words. Although limited now, it can only improve with time and will certainly help him communicate more while his speech is still somewhat limited.

Physically, Justin has gained all the weight that he lost in India, he looks a million times better for it. He still has limited movement on his right side but has good movement and co-ordination on his left side. He can eat and drink himself with little assistance and even play Connect 4. I've been encouraging him to do some of these things with his right arm with varying degrees of success, it all depends how relaxed he is at the time.

You may remember a while back, a post where Justin had taken a couple of assisted steps. It was an exciting breakthrough and was possibly the start of some amazing progress. Unfortunately it never really progressed beyond that, but I don't believe it was due to the unwillingness on Justin's part. This all happened in the last week or so at Broomfield Hospital where the pace of rehab slowed down as he was then moved very soon after to Northwick Park.  We were led to believe he was to undergo extensive rehab including physio,  however, this didn't happen because of the bacteria and the subsequent isolation. So any significant physical improvements slowed right down which was a huge disappointment for everyone.

To sum up Justin's time at Northwick Park, I think I can speak on behalf of all our family, we all feel a bit disappointed. I appreciate that infection control measures have to be in place and enforced in a hospital environment to protect other vulnerable patients but that has come at a price, Justin's rehabilitation has suffered. That's simply not fair on Justin, no matter how you look at at.

Therefore it was with great relief to find out two weeks ago that Justin was to be moved out of Northwick Park and into The Gardens Neurological Center in Sawbridgeworth. This facility specialises in slow stream rehabilitation for patience with serious neurological disorders and specialist needs like Justin's. It is a private facility with treatment funded by the NHS and will offer Justin all the rehabilitation that he'll need to reach his maximum potential. So whilst everyone was preparing for xmas on the 24th December, Justin was being taken by ambulance to his new home where he will most likely be for the next year or possibly more. I'm now in Norway but I saw him just before I left and he was looking forward to the move, he'd also had enough of Northwick Park and had even mentioned to Brookland that he was lonely there. I spoke to Dad yesterday and he said Justin seemed happy and content with his new surroundings. Mum and Dad spent Christmas day with him where apparently he was excited to open his presents. It goes without saying that I'm looking forward to seeing him when I get back on the 30th and witness him using his electric shaver, electric toothbrush and other things that perhaps he would never have bought before but they will certainly help him regain some independence, little by little.

I remember Justin's friend Barney saying something in a post a while back, something about "Justin has been on the minor roads until now, Northwick Park was his highway to recovery". It was a bit more eloquently put than that but whilst Justin may have been on the highway home, he got stuck in the hard shoulder for a bit. The fast lane clearly wasn't for him so he's taking the A roads for a while, there may be more roundabouts and crossroads this way but all roads have to lead to somewhere, and its that somewhere that he'll get to in the end.

C'MON JUSTIN