just because he was wearing his Daniel Craig shorts doesn't mean that he's James Bond

Aqua Zack is back. I took the Pants swimming today and we had a lovely time. The original baby wetsuit we had bought now seemed somewhat tight on Zack but I managed to velcro him in, eventually.  Under this he wore his new swim shorts, Daniel Craig style. I looked less attractive in my swimsuit and tried to forget the image that looked back at me as I checked out my swim-wear in the mirror. I really must stop eating those mini chocolate brownies.


Zack enjoyed his swim. Well enjoyed it as much as he can. He was more bemused, bewildered and yet very, very into it all. I pulled him round on his front through the water and he kept his head up taking in the scenery. I also caught him checking out a little girl that was with her mum. He was looking behind me when I turned round to see a cute little baby in a pink costume. I told him just because he was wearing his Daniel Craig shorts doesn't mean that he's James Bond. We stayed in the pool for a good half hour, I reckon we could have stayed longer but I was getting a bit cold and wrinkly. I think it was fair to say that we both enjoyed our water adventure and shall be returning very soon.


I got a check up call today from the epilepsy nurse. She asked how Zack was getting on with his Vigabatrin. I explained that whilst he seemed more alert he was probably still having a couple of seizures a day so maybe it isn't work. She said that we won't know for sure until he goes for his EEG in a few weeks time, but it could be that this may be the best that we can get to with Zack. 


I said that if it hasn't worked we wanted to speak with the neurologist. I also asked why we were going through all this when the original plan was to stop the hypsarrythmia, why are we now accepting that this may be it. I can't really remember the outcome of the conversation but I think I made the point that we want to talk to the person making the decisions rather than the ones just administering the medication. I felt like I had been a bit tough on her as it isn't her fault she is just doing her job but I am not prepared to give in so easily, there has to be more options. If we look at the positives Zack is a lot more alert, he is responding more and tonight I even managed a little conversation with him. Nothing exciting, we didn't chat about Eastenders or the state of the world today, it was more like, helllooooo little man, gggggggghhhhh, ggggghhh, oh did you, gggghhhhh, that's lovely, ggggghhhhhh gaaaahhh. Not very interesting but so exciting for me.


We also had a call from the Family Support worker. She told me that we will be given some Direct Payments for three hours a week. This is great I said and we arranged an appointment for next week. I ended the conversation by saying, okay then, thanks, yeah, love you, bye. 


I put the reciever down and immediately thought, oh my God did I just say love you, oh shit, I bloody did, I said love you, noooooooooo. Now I bet she thinks I am a right crazy lady, bloody hell, she will be marking up her social workers chart for crazy ladies!!!! I am hoping by next Wednesday she will have forgotten about it. Oh God. I hope she does forget.

maybe tapping his hand is like morse code for him

My telephone stalking gained results. So far we have managed an appointment with Zack's physio, arranged an appointment with the O.T and met our Family Support Officer. 


The physio appointment went well. Zack was awake and alert and she was pleased to see that once relaxed he happily raised his neck to look round the room. Previously Zack used to hunch his shoulders up with a tendency to drop his head forward. He still does this a little but not as much. I told her he is tolerating his tummy time a lot more and even tries to lift his head up. 


We have had a little break-through with Zack's head holding and as much as I would love to say I discovered this trick it was in fact his daddy who worked it all out. Dan was looking after Zack one Saturday afternoon, he had all his toys out on the floor and was trying to encourage him to lift his head up off the mat. He tapped Zack's hand and he suddenly pushed himself up and lifted his head. "Look at this" Dan shouted,


 "oh yeah" I said, "he is lifting his head, he does that for me sometimes." 


"No, watch when I tap his hand, he does it all the time." Sure enough he did. 


I tried it myself today. I had Zack lying on the floor, arms in front he wasn't really trying so I tapped his hand. Tadaaaaaa.....he pushed himself up and lifted his head. Blimey, maybe tapping his hand is like morse code for him. But the even bigger break-through was today, he held is head up for at least a good minute, it was brilliant. I hope he keeps improving with this as then we can work towards crawling. 


We had a visit from the Family Support Officer today, otherwise known as a Social Worker. Most folk would worry about such people calling round to your house but I'll take all the help I can get. We discussed Direct Payments so that I can get extra help and support and I went through the umpteen people that Zack visits. She had already spoken to one of the doctors about Zack which was a bit strange as this doctor only treats him for one area and doesn't know him that well, but then I thought well maybe she just needed some background to his condition. I also had a good moan about the fact that in our area there is no parent support or baby and toddler groups for children with disabilities who fall into the early years category. We also discussed nursery and I told her that I wouldn't be happy with Zack just going into a mainstream nursery as I don't think he would get the one to one support he needs. She asked if I thought he needed one to one support. Well yes I do. It's not like you could pop him into a class and expect him to take on board all that's going on, he needs someone to work with him. Anyway, he isn't going into a nursery and by the time I think he will be ready he may have developed even further. 


Zack and I went to school for the second time. It was brilliant. The little class is so lovely as is his teacher and her assistants. Zack now has his photograph on the picture of the school bus which is on the wall. He was also given his own little bag that has a new hairbrush, toothbrush and face-cloth inside. We then had to get out each item and brush our hair, clean our teeth and wash our face. Well Zack's not got any pegs to clean yet but he did stick his tongue out and brush that. 


We also sang some nursery songs but by that time Zack had fallen asleep so I chose a huge chicken hat for him to wear for when we sang Old McDonald, I think he may have chosen the cow hat but he will fall asleep and leave me in charge of dressing up outfits.


We went on to do stretching and then he woke up just as we were smelling different foods. After that we all sat in a circle and had a snack. Zack had a little bit of a yoghurt but didn't really want it so I ate it for him. Whilst we were waiting he had a look at a fibre optics lamp and then we had art time. Zack painted his very first picture. We used cut up fruit and veg to dip in the paint and press onto the paper. By the end of it Zack had a lovely selection of circles. His picture now has his name and date on it and will probably be on the classroom wall. Then it was home-time, he got given a wonderful sticker and was chosen as best student in the class. Well done little man. The class is really great I understand what they are doing and why they do what they do in each session. It's good that he is experiencing new things and I am also getting new ideas of how to work with him. Never thought I'd say I was looking forward to going to school.

Zack is on his full dose of Vigabatrin. Rather than knock him out he still remains fully alert. He only falls asleep in the day for about half an hour and still goes to bed about 9pm then up at 7am. Seeing small seizures but nothing too huge I don't think as of yet it has stopped his spasms but our EEG is booked for the second week in February so we shall see then. 

Does three phone calls in a week equal stalking?

(Say this in a Geordie accent). Day 5, Linzi is hitting Zack on the head with a tambourine. Zack is enjoying being tapped on the head with a tambourine. Linzi has full blown cabin fever and did not realise that today was Friday and tomorrow the weekend. Outside is still frozen.




My venture (you can stop reading in a Geordie accent now) into the outside world has meant a meandering stroll down the street. Well, not so much a stroll, more of a sliding my Ugg boots down the lane as though ice skating. Zack knows when he gets taken out for his walk, he sits quietly in his pram, contemplating the numerous ways he can exact some punishment on me in ten years time for making him wear a pumpkin outfit, elf outfit and blow drying his hair into a quiff. I know when it's time to turn back by the colour of Zack's nose tip, a pale shade of pink usually means it's time to return home. Although I am hating the snow and frozen road, it is beautiful here. Everything is so quiet and peaceful, only disturbed as you gaze out of the back window at the cat eating a captured bird in two bites. (This consumption was also followed by a large rat being left by the garage door).


So what's a girl to do when housebound......phone up and harrass people of course. Yes. I have been chasing the Speech Therapist. Does three phone calls in a week equal stalking? I still haven't found out when Zack's next appointment is, in fact, either no-one at the hospital has seen the woman or she is avoiding me. One hopes it is not the latter. 


I also telephoned Social Services about getting Direct Payments. These I think can be used to gain support and help when caring for someone with a disability. Bingo. I was in luck, a lovely girl phoned me today. I think my over-eager telephone manner gave away my mental state of being house-bound. She apologised  for not being able to come round due to the snow etc. Apologise, don't apologise you called me, why we are practically best friends. We had a nice chat about the weather and how we both agreed it was better for it all to thaw out before she came for a visit, I mean I am more concerned about her safety than sorting Zack and I out. I told her all about how I used to work at St Helens College (she lived in St Helens), my whole life story in fact. Just kidding, I'll save that for when she visits, mwahahaha! She suggested that perhaps we can get me a Personal Assistant. Long Pause. A Personal excuse me....thoughts ran through my head of some young girl running round getting me faxes, picking up dry cleaning and answering the phone. No that can't be right, this isn't The Devil Wears Prada. She continued "you know someone to help you with Zack."


"Ohhhhhh, well I'm okay with him I could do with some help around the house you see."
" Oh, right, yes that's fine. What I'll do I'll bring all the information with me when I come and visit, after it's all thawed out."
"Okay, after it's all thawed out."


So I expect to see her in June.


I brought all of Zack's toys downstairs today. We had it all drums, maracas, tambourine, books, wrist toys the whole shahbang. As a special Christmas present I had made Zack a Sensory Book so he could touch and feel lots of different textures. When Dan come in tonight we were just putting things away when he picked up the book.


"Aaaaaah, look you've even written a little story for each picture"
I had. I was very creative.
"Aaaaah Honeycomb....but no busy bee. Fly to the moon space boy. Oh, no. Dinosaurs in your book."
He continued flicking.
"A patch of leather. Christmas tinsel. A shiny disk." He looked at me and his face said it all.


I realised that I had become less creative as it got nearer to Christmas. And to be honest, after wrapping up 45 presents it's hard to think of some witty story to go with a patch of leather.


Right back to the telephone book.......ooooh cold weather payments, not seen them yet, who do I speak to about that.