Thursday, June 29, 2006

A catch up post

Well, we finally seem to be recovering from a hectic and stressful week last week. The house is finally clean and tidy again after all the celebrations last week Mum and Dad were here from Stoke-on-Trent Tuesday and Wednesday. One purpose of the visit was to collect the girls if Wills had gone into GOSH but they were also here to see us all following Hope's birthday and to visit CHASE for a Grandparent's session. It has been lovely to have them for a few days and actually relax with them rather than me being in hospital with Wills and them picking up the pieces with the girls. Paul has now begun Glyndeborne performances so will not be around in the evenings much until September, then briefly before going on tour so it was nice to have a busy house for the last few days.

William had his 2 year developmental check today. He had to see a member of the community paediatric team due to his "issues". It turned out to be really useful as she as able to hurry the physio appointment (thanks to Wills walking so badly she commented - "he really is trying..." - he runs at home, I told her, all be it in his unique wobbly style but he does it!). She has also referred him to a communiy paediatrician in the children with disability team whose role will be to co-ordinate with the many people involved in him and pull it all together, refer him to others where needed etc. That is great because we really need that. His feet were a cause of some concern as his arch and instep are now so high they were described as "deformed". If that is the case, they will, hopefully be corrected by boots and/or splints. She was delighted by his wonderful, social personality though - everyon who meets Wills loves him for that. I keep saying it, but I have never met a happier, more socialble little toddler - Hope and Ellie would agree with me too. After that, we had a brief coffee with Grandma and Grandad and said goodbye before popping home to take the TPN down and off to visit the Opportunity Playgroup for children with special needs. This was lovely and I am looking forward to William starting when a place comes up. He will have speah, physio and occupational therapy there. I do have to stay though as the staff are unable to so the medical procedures he needs. Another busy and hectic day!

A sad part of today was saying goodbye to our very best friends round here. The photo above shows us all together for a barbeque a few weeks ago (I, of course am taking the pics as usual). Clare is William's Godmother and has been an amazing support for us, having the girls over and over again when he has been suddenly taken ill. One of her daughters has been Ellie's total best friend from the first day she walked into school. We will all miss them so much but are looking forward to visiting them in Somerset. A great moment though was that one of the community nurses who looked after him when he was on oxygen, for weekly sleep studies etc, and who had left the team, found our number today and got in touch. We were becoming good friends and now there is no professional distance to be maintained I am really looking forward to developing our friendship. We are visiting her Monday and I can't wait! It has been a year since we last saw her, just as William was being diagnosed with "presumed CF" and she was so great through it all. It took me ages to describe how we got from there to where we are with William now!

1 comment:

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