The Pants had a very busy week. Not that he would have noticed as he just gets to see a few new faces and interesting rooms in clincs. As I write this I am trying to think back to Monday and remember who we met with, oh that's right Monday was a day off I think, even so it still felt like a busy day.
Tuesday was mega. It started off with a visit from the community nurse which is always nice. She called in to check out Zack's PEG. It was still oozing gunk and the over-granulation had now formed a big blob, rather like he was growing a second body just to the left of his belly button. Dan did question whether his stomach was growing out of the hole made by the PEG which lead me to wonder about his IQ level. But it was okay he was just having a Goldie Hawn moment. I reassured him it wasn't his stomach mutating just some cells growing over the hole trying to mend it, all part and parcel of a healthy immune system. The nurse ordered us some more cream which would hopefully dry it up and stop the infection. So far this has worked and Zack's PEG is looking a lot better.
I just managed a cup of tea and slice of toast when our next visitor turned up, a lovely lady from the charity SENSE.
SENSE helps children and adults who are deafblind by offering support, campaigning and making information available via publications and the web.
SENSE lady was fantastic, she asked me all about Zack and how he communicates, I told her how I know when he's annoyed and when he is content. I also mentioned how he has started to anticipate things which she said was a really good thing, now I just need to read the signs of knowing when he wants me to continue to do something. For example when we play a game, he isn't making sounds to tell me he wants me to do more, they can often be quite subtle so I have to watch for them. This lead to a lot of time between Zack and his new friend repeating phrases and tapping his chest which he seemed to like. Zack tends to make little clucky sounds when he is happy and little whiny murmurs when he is chatting. He also makes his breathing slow down when he concentrates, that's quite cute, he stares at you intently as though you are the most interesting thing in the world.
We then popped him into his Little Room so she could watch to see how he moved and responded to play on his own. He didn't let me down. He decided he was going to be extra smart and show her how he can work out where his rattle is on the side of the box by hitting some bells and then swinging his arm around to the side. He then opened his hand and hooked his finger through the rattle so he could grab it. I was impressed, our visitor said he was definitely planning this move and using orientation to work out where it was which is all very good. She said she would like to visit again, I said great. Maybe by then Zack will have mastered the art of juggling!
After this visit it was time for a quick feed for Zack and a sandwich for me then off to the hospital for an appointment with the vision lady. I have no idea of her correct title but sessions usually include her shining a pen torch in Zack's eye for pupil response and then waving a lollipop shaped board in front of him with black and white zigzags on them. We hadn't seen her in a while and what usually happens is Zack falls asleep within five minutes of meeting her. He was so on form. As soon as we went in the room he went to sleep. When he did actually decide to play along he got annoyed with the light shining in his eyes, which the vision woman was very pleased about as this reaction meant that light was getting through. She also thought his pupil reaction was getting better, Zack made a good response when the lights were turned off and the blind pulled down. At one point he caught sight of the lollipop board and followed it only a little but enough to warrant some excitement. The lady did remark that he was a bit of a cheeky monkey and had certainly put her in her place by only doing things on his terms, which is what I have been telling everyone for weeks. Zack will not do something unless he wants to do it, a bit like his mum. We left the appointment with our very own eye pen torch and instructions to warm up his eyes by shining it in them and then follow this by showing him a black and white toy to encourage following movement.
When Dan came home that evening I told him about the appointments and the pen torch. Now Dan loves Zack immensely but he does sometimes have a habit of testing him, especially his eyes. So it is with trepidation I mention the pen torch....
"We've been given our own light pen." Dan turns to look at me with a smile on his face, "Have we, were is it?"
"I have the pen. It's hidden away because I know you as soon as I go out tonight you'll be on with the shining in his eyes and we are only to use it occasionally."
"No, I won't. Where is it?"
"I'm not saying, I am going to monitor the pen torch use."
"Well, how many times can I use it then?"
"Three." (I had no idea I just made that up).
"Okay. Well I won't do it tonight.......so where is it then?"
"Oh look is Zack having a poo, he might need his nappy changing."
Ha! A diversion meant I went off with friends to the Trafford Centre for five hours and Dan forgot about the pen torch. Okay, this may seem like very controlling behaviour but seriously, I know him, the temptation would have been too much, all Zack would have seen for the rest of the evening would have been orange lights. Needless to say we have since used the pen torch and Dan has not at all been over-doing it. In fact I think we got over-engrossed in using the pen torch on each others eyes to see how quickly our pupils reacted............I think we need to get out more. Pen torch is now a free agent in the house and rests openly on the table in the lounge.
More rest of the week to follow.