Wednesday, 18 January 2012

wednesday 18th Jan

Well, it was liberating to know that we were not tied to the room today!!!! As Harry kept telling everyone we were escaping!!! We spent the morning in the playroom and Harry did arts and crafts and had a little go on the Wii! This afternoon we went up to The Learning Zone! As Harry is not in school we are not really suppossed to be there, but when one when of their workers approached us in Nov not realising that Harry just missed out on school, I questioned why no provision was made for those of pre school age, seeing as the government made grants for it! So we were told we could access The Zone's facilities, but Harry cannot be taught! So anyway today being the first time in a while not isolated and Harry well enough to venture out and about we went to The Zone. However, after an hour on the computer, we noticed a pool of water on the floor, after closer inspection we realised it was coming from an overflowing toilet! Not to be detered from finally getting to The Zone, we carried on with our computer programme, however, when it was only inches away from us and we could no longer hear the computer's instructions due to a machine sucking the water off the floor, it seemed like a good time to make our exit!!! I do think that we were eyeballed as to having caused 'the flood' as Harry had used a toilet earlier and due to a misfire, he wet his clothes and so I had to leave him on his own for 5 mins whilst I dashed to get clean clothes from his room. However, honest gov, we used a different toilet!!!!!
Now Harry has a good memory for faces, like his dad, and as we were going down the corridor he told a man whom he said mended radiators about 'the flood'! I said how do you know he mends radiators and he said that he came and fixed his in his room one day, but I was out shopping!!! Probably runing around picking things up to resemble some effort had gone into Christmas!!!!
Harry has been in really good spirits and very chatty as my friend whom visited us this afternoon observed. Yes the boy whom at age 2, I wondered if he would have a speech problem, won't stop asking the why, where, how questions!!!! One question always leads onto another. The other day it was about breaks and how they work and where are they connected to in the engine and then what powers the engine, then what powers bicycles and then what wheeled drive are they!!!!!!
So I am at home and Paul is now at the hospital, Hary is due to finish this treatment and transfusion between 9 and 10 pm tomorrow! I am going on a training course tomorrow, so it'll be interesting how many braincells I have left to contemplate new ways of working within our team!!!! If I remember my team from having last worked in October - only joking guys!!!!!
Oh I have ommitted i think to say that Harry has gained a pound in weight, this is magnificent and his dietition is very pleased. This does not mean bye bye to the NG tube though as his weight will fluctuate so she says, but we will see, maybe it won't too!!!!!!
On a sad note, having got out of isolation and been able to speak to parents, I met a family with a son whom has Neuroblastoma too, however not great circumstances to meet them as their boy was about to have an MRI scan. He has been through all the chemo Harry has, as well as radiotherapy, high dose chemo and stem cell therapy, but he has a lump in his leg now, so has to have all retests again to find out the exact position of play and have more chemo. I guess that is why our consultant is never too optimistic with us as it is a long road, but hopefully we will reach Cansus City and the tin man will have a heart!!!!

1 comment:

  1. I have everything crossed for you all to reach cansus city I really do! X