Today we met a good friend and business associate in the Nursery with Charles, first to admire Charles and second to start to face the learning we have to do to be able to give Charlie the best start. Gill's brother started on the road to contructive care over ten years ago and she has seen many changes in attitudes and standards of care offered to people with brain damage. He is in his fifties and constructive care has seen him develop sign language and a much happier lifestyle.
She has a wonderful take on this disability and if we can match 10% as much we will be doing very well for Charles. We now know much better the resources available to help us and the importance of learning ourselves how to help Charlie thrive asap. Thanks Gill; we will be drawing on your skills many times these coming months/years I am sure.
Of course Gill is one piece in the support team we will be building and all of you reading this have a part to play. From a cheery smile and a familiar wave or phone call for a chat to being there for us when we are down or collecting Emily or inviting us all round for a meal, we will need you to continue to treat us as you would if Charles had no disability. That is going to get harder for you and us as time passes.
As for Charles he is playing his part in the deal and did a wonderful pooh for me today and I got to do my first proper nappy. A lovely and positive event in his diary that could mean his intestine can settle and work normally without an operation. Next he has to prove the intestine is ok over several days. Then he will be fed into his stomach to see if he can regulate food into his intestine. Finally we might get to the suckle stage we so desire: we desire like a free-diver wants air at the end of a long deep dive reaches the surface and prepares for the next new challenge.
... Alice says she might get his hearing test done tonight!!! ...watch this space.
Finally Charlie is showing his mischievous side as he pulled out his intestine tube with his hand just before we left. He had mits on a few moments later...and the tube will take four hours and an xray to get back in position.
Love Nev
Pics are better without the tube though....
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