Thursday, October 05, 2006
Well, William is being quite the grown up boy this week. He started Sunday School on Sunday and, today, had his first afternoon at the Opportunity Playgroup. This is a playgoup for children with special needs and he will get speech and language and occupational therapy input there, alongside the normal pre-school learning. He still has a lot to learn about the structure of these activities, such as sitting down with othe children to listen to a story etc. He'll get there though. He hasn't mixed with other children that much as, even when in hospital, gastro children are not allowed to mix freely with others on the ward as they are very susceptible to infection. He does play in the playroom in hospital but only when they know there are only surgical and other gastro patients in there - so not all that often sometimes! Sunday School is frustrating for William as he is on his TPN so has to stay strapped in his chair where other children are sitting on the carpet together. We could let him join in on the carpet but he would want to run around and it would make him so cross that he is on his TPN so can't run around freely. He is at the playgroup on Wednesday and Thursday afternoons so is free of the drip. He really enjoyed running around but was not yet organised enough in his behaviour to calm down and join in the activities. They will be working on that though! The girls were both really excited about William's big day at playgroup and came running out of school asking how it had all gone. It had been the talk of the day with their friends. It is lovely how supportive and encouraging they are towards their little brother.
Due to confusion in the day, we did not have the OT and physios today so William has a reprieve before we start bracing his pelvis. I hope the gastro team can change his gastrostomy before then as it is currently very big and cumbersome with the tube inserted through to deliver medicines below his stomach. There is a new, much smaller and neater one that combines both of these tubes into one. This will be much easier and more comfortable under the brace or support. The physio thought the appointment should have been tomorrow and there was no way we could have moved it. Everyone seemed to want William tomorrow morning - the incontinence nurse, portage worker, physio and OT and wheelchair services! I had to prioritise and put the others off. He will have a short portage session and then we will head off down to wheelchair services. This really is urgent with the poor posture he has in his buggy and the way it now uptips when he gets agitated and bangs his head around - always in busy places (as it is the business and over-stimulation that causes the agitation)!
So, tomorrow is another day of running around: school run to portage to wheelchair services to playgroup to schoorun to Hope and Ellie's swimming lesson then home for TPN!!! Well, at least it keeps me fit! Meanwhile, Paul's leg is healing but much more slowly than they thought so the frame will be on for at least 2 more months. At least he can start physio now so is getting more mobile around the house. It will be a very long time until all is back to normal though as he will have a cast when the frame eventually comes off. Mind you, it will be a walking one and below the knee so will be a HUGE improvement on the current situation.
I think we must be due a nice, calm 2007!!