Thursday, 7 June 2012

Has anyone seen where I put my patience?

Morning all.

Enjoying the stunning British Summer weather? Spare a thought for my sister and her family who are camping.  I'm thinking they may be a bit damp.

A quick post to keep everyone up to date.  We are still patiently(ish) waiting to hear about the funding decision which has been delayed by the Jubilee weekend.  We should know next week and then, assuming there is a bed available at the chosen unit, we will be moving on very quickly.  Some good news; a third option has become available at a unit called Glenside which is a neurological rehab hospital in Salisbury with an excellent reputation and a specialist pathway for neuro behavioural challenges.  Perfect.  The Neuro Psychologist visited Jake yesterday and feels confident that they can help to unlock some of the behavioural challenges that are holding him back at the moment.  Glenside is also only an hour away which makes life easier in every way.  Lets hope we a) get the funding and b) Glenside is selected as the right place.

In the meantime we continue with home visits and Jake came home every day over the Jubilee weekend which was lovely and challenging in equal measure!  He is much more co-operative and open to engage at home, but he is still very damaged and soul and if patience is a virtue, I am truly a virtuous person!!

From the perspective of firsts it was a great weekend; he wheeled himself around the house properly for the first time (we really need to widen the doors!), he ate his dinner at the breakfast bar for the first time and he took himself off for a rest in our bed for the first time.  The taking himself off to bed is hilarious, because he would clearly like to spend all day there and I am refusing to let visitors go and talk to him when he is in bed as we are supposed to be encouraging him to be up and engaged more during the day.  This leads to many comical exchanges where Jake attempts to trick us into going to talk to him and I yell back that we can't hear him so he'll have to get up!

He's still being very uncooperative and aggressive with the Boot Camp team and it feels like we are all marking time until he is moved to the next stage of his journey.  Here's hoping it comes soon.

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