Sunday, September 17, 2006

Meeting of Angels

Well, we got through the week with nothing worse than a bit of extra weariness and tension in the inevitable arguments between Paul and myself during these challenging times. William went to see his gastro consultant on Friday. It was a bit of a hard appointment as I could tell he was noticing William's physical and cognitive limitations more. Mind you, William does have a tendency to retreat into "William land" staring up at the lights and shaking his head around to see the patterns it makes or, worse, get very agitated and bang his head on his pushchair when he is a) somewhere unfamiliar or b) over stimulated. A busy paediatric waiting room is both so they don't really see the best of him! We are fast learning that William can repond very well to things but needs time to process what he is experiencing and then form his repsonse. Hence, he will say goodbye to someone when they are already half way up the street and said goodbye to him several minutes ago. This is fine when he has one task and is given time and space to process it but when he is bombarded by several things such as several things to see, hear, touch...all at once, the time and space he needs to preocess each individual task gets into one huge busy Picadilly Circus style jam and he either retreats or gets very agitated. We have also found he gets very agitated if he his expectations change. We were walking home from taking Hope to the sailing lake on Saturday morning and walked past the tram stop we use to go home from school sometimes. It took him a long time to stop banging and shouting, much to my embarassment in the Co-op! This is, apparently, common in this kind of syndrome and due to problems in the neural connections so everything takes that little bit longer to travel and, in some cases, such as his intestines and part of his pelvis and feet, doesn't happen at all. As I have said before, time will tell what he is able and unable to do.

Unfortunately, we were unable to get his jej tube in as our gastro specialist nurse, the only man it seems able to do it in the entire world, was off sick. I am glad though as I would rather we wait until tomorrow than have a doctor think he/she can do it, only to put him through hours of pain and discomfort and still leave with no tube - this has happened before! The good thing about this was we had some time to pop down the road to the Brompton and introduce my little angel to THE Angel...

William was slightly shy around the tubes and drains that poor Emily is on at the moment but soon settled down into his usual sociable and entertaining self. Clearly Emily's room was much more calming than the clinic. It was lovely to see Emily again and introduce her to William. We tried to get some pictures, taken by Em's lovely friend. William eventually turned round but Em and I were so busy encouraging him to look at the camera that we forgot to do so ourselves! He was in very wriggly mood as he had just come off his TPN drip so wasn't really up for being held down for a photo.

This week is going to be just as mad, if not more so! We are hoping to get William's new buggy/wheelchair assessment in before GOSH next week. We also hope the physio will come with his Piedro boots and to discuss his pelvic bracing. He has portage (pre-school education support) and I have a half day Makaton (sign language) course. Tomorrow, we have to go back to Chelsea and Westminster to have his jej tube in. This would all be hectic but just about managable, however, on top of this Hope and I have 3 secondary schools to see in the evenings. So, there will be much rushing between William's stuff in the day to Hope's evening visits, with TPN and IV drugs to fit inbetween! Tomorrow is the worst as we are at the hospital in the late afternoon, an hour trip home, TPN and drugs to do and a school to get to for 7!!! I think I really do need to morph into Wonder Woman to get all that done on time - maybe I should practise that spin!!!

3 comments:

MoO said...

I don't know how you'll manage to fit it all in, but you are inspirational. It was nice to see the Angels together again, and ofcourse the 'Little Angel' what a lovely little boy William is.

MoO

Tinypoppet said...

DOH it swallowed my comment!

Was wittering on and on about what an amazingly gorgeous child Wills is - you are lucky you didnt get home to find I had stolen him and stashed him under the bed Sarah! He well and truly stole both mine and Hols hearts. So full of character not to mention a little blonde haired cherub!

Wonderful to see you again as always, love to the family xxx

Tinypoppet said...

You are very lucky that you didn't get home and find your little Angel missing you know Sarah, he was just so amazingly gorgeous I wanted to steal him there and then! Though being tied to the bed somewhat I would have had to rely on him hiding underneath and staying quiet ;) It was wonderful to get to see your cherub at last, he really is the most lovely boy, so full of personality, both Hols and I were enchanted straight away. Wonderful to see you as always, lots of love xxx