Thursday, September 27, 2007

Hectic, as ever

I really promise I will keep this blog updated more from now on. Things have been so hectic since we came home from hospital. We have been trying to sort out William's statement of educational need, something that never seems to work out as easily as it should and we are still having meetings and discussions about. In the meantime, I have been settling William into playschool for 3 afternoons and one morning a week. William can not be left without either myself, Paul or a qualified nurse. Thankfully, they have agreed to provide a nurse for William at playschool, despite the fact his statement has yet to be finalised. Luckily for us, one of William's lovely respite nurses works around a school day so this is perfect for her. William adores her and they both seem to have a lot of fun together.

On top of all this, Hope has been setting into her secondary school. She has grown up so much, perhaps too much. It is lovely that she is making lots of friends and likes to incorporate a social life into walking home. We have had to spend the last week or so reigning her in a bit and reminding her that she is still on 11 years old and her whole life can not just yet be organised through her mobile phone. Hope hs been chosen as a school council rep. She is also keen to play basketball and football. These clubs take place at 7.30am so we are set for an early start tomorrow.

We are all getting a bit sporty these days. Paul is currently searching for a gym to join as it has been ordered by the physio as part of his rehab. Hope and Ellie are both about to start a Christian Football Academy, Kick London, that is being organised through church. I am to be a coach at the academy and am in the middle of my FA level 1 coaching certificate. This has taken place on 3 evenings and all day last Sunday. This Sunday is assessment day when I have to deliver a 15 minute session, based on a game given to me last week. My game is a bit of a tricky one involving throws, heads and catches in a 5 v 5 game.

It is all very hectic and, as usual, the appointment letters for William are piling up. He is due to go to the muscular dystrophy clinic at Hammersmith Hospital at the beginnig of November. It now seems that he does have some kind of progressive neuropathy and this is the best team to monitor and help him with this. With his motor deterioration and time spent attached to his TPN in mind, he will soon be given an electric wheelchair. We tried one out on Monday. It needs to be adapted to make it a lot smaller and enable him to reach the controls. This will take a couple of months. This is fine though as William needs a few more lessons with the occupational therapist to learn how to use a joystick to control a chair. Tomorrow, we are being visited to see exactly what we need to do to our house to make it accessible for William. It looks like a major rebuild will be required.

It is all these practical things that dominate our lives so much. I have been juggling two part-time jobs, working from home, with it all. I have just come to the decision that it is all a bit much. One of the jobs - being the director of "The Brompton Fountain" works very well but the other is very stressful. I won't go into too much detail in a public blog. One thing we learn time and time again on our journey with William is that life is just too short. I am also fed up with playing catch up the whole time. Now I can put all my work energy into building The Brompton Fountain. Funds will be a little tight but I am a strong believer that things will work out if it is the right thing to do.

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