A quick update

A quick update, after a phone call from Mum saying she has missed the regularity of posts lately! I really must get back into the habit of doing this more regularly as there is always so much to say when I leave it to the end of the week.
It has been another busy week with lots of coming and going for William. This photo is with one of the nursery nurses that come in to play with William and other children who receive pallitative care in the home. He loves this one-to-one attention and we also get it from our fantastic volunteer who acts as a link worker. This is provided, following assessment, from the children with disabilities team from social services and the workers are all volunteers, spending hours in children's homes so parents can get on with other things. For me, this means I can actually gets some work done. William's occupational therapist fitted him for a lumber belt to try and support his posture more. He needs a custom made one to accomodate his tubes, which is pretty cool really as, rather than the standard white corset, his will be made out of blue and orange neoprene (wet suit material). She is also going to talk to the physio about his walking and involuntary spasms, to see if we can start some exercises and hydrotherapy. He had a really bad day earlier in the week when he was so tired be could barely walk at all. It may be that we start looking into a walking frame for such days. We have been encouraged to start using the wheelchair in the house when he has bad days for now (not that we have an awful lot of room for that!). As always with Wills, so much is watch and wait and see how it goes. It will be really interesting to see what the neurologist says next week.



This week, William has had visits from his link worker (twice), nursery nurse, portage worker, occupational therapist, community nurse, respite nurse and CHASE hospice community nurse! We are SO lucky to have so much support. However, the pallitative team and CHASE receive no government funding and rely soley in charitable grants and fundraising. Wills and I are off to the hospice today so I can take part in the Losely Park 10K run tomorrow to raise money for CHASE. It is a lovely sunny and crisp November weekend and it will be an off road run so I am really looking forward to it. The pictures our club took of the cross country last week have now been put on the web. I look SO much better on the second lap so will make sure that I warm up properly tomorrow. Will post how it all went tomorrow but for now, I have less than an hour to finish packing, get WIlliam flushed off his TPN drip and get out of the house!