After an appointment free week Zack and I have been thrown back onto the endless merry-go-round of hospital waiting rooms. It's only Tuesday and so far we've seen three people.
We had a meeting with his consultant on Monday. We still aren't on top of his epilepsy and (optimistic as ever) the medical opinion is that it's going to be a difficult battle. I know it's going to be tough to get it right and get it under control but I'm hopeful that we will one day.
At the moment Zack is having about 12 -15 seizures a day, they are still only lasting a couple of seconds and don't cause him any distress. We are nearly at our full dose of medicine so I think the next step would be to try something else. I don't like the thought of giving him more medication but I know that we have to in order to give Zack the best chance of development.
The rest of the appointment was just the usual measuring of head, physical checking over and meanderings about the fact that Zack is going to have severe problems. Hmmmm, you don't say, comments like that don't really help parents. It's not like we are under any illusion that things are difficult for Zack but at least cut him some slack, acknowledge the things he has managed so far, however small they may be. He's a completely different baby to the one that was in hospital and whilst he may not be able to do things that other children can whose to say that one day he will and if he can he'll do it in his own time when he's ready.
I really don't like going to the medical appointments they bring me down a little, remind me of what's wrong instead of what's right. I think this is why sometimes you have to rely on your own belief that things will get better and I really do believe that they will. I'm not talking huge leaps and bounds but slow, small, steady steps.
Dan is very supportive and a great dad. He has his moments where the worry gets him down but he is great at picking me up when I feel low, plus he notices humour in things that you may ordinarily miss. For instance, later when we were at home after the appointment he said to me: "Did you notice the fire-man tabard hanging on the doctors chair?"
"The fireman tabard, it was a tabard but it was a fireman outfit. You would put it on and be dressing up as a fireman."
"No....I didn't see it."
"Hmmm...I think at our next appointment I'm going to say, what's that Zack, you want the doctor to wear the fireman tabard."
Lord help us. Now all I can see is the consultant dressed up as Fireman Sam. I wonder if he ever does wear the tabard.
We went for another eye check today. The usual lady wasn't there but another lady took the appointment who was very nice but talked at high speed. Zack did his usual trick, he managed to stay awake for a bit but then completely switched off. The eye lady suggested he was very sleepy. She was right. Maybe they should stop giving us appointments in late afternoon, and they might get a bit more out of him.
Her consensus was that Zack isn't so much looking at things close up as things in the distance such as contrasting colours and light and dark. We are going to have another appointment in the sensory room and he will be checked over by a consultant. So to be honest, the appointment was a bit of a waste of time. I'm still carrying on with what we've been doing and will do a lot more of it, especially when Zack's alert and interested.
We've been trying Zack with a little bit of baby cereal once a day. It's going well, I can't say the apple and raspberry mush is very appealing but he can manage a spoonful and at least it's getting him used to texture and taste.
Have also been letting Zack have a lot more tummy time of late to try and build up strength in his neck, so that he can lift his head up off the floor. Today, something brilliant happened. He raised his head and shoulders off the floor so that he was propped on his forearms, he held the position for a good few seconds before turning his head and placing it down again. It was brilliant, I even managed to shout Dan in from the kitchen who was able to see it for himself. A round of applause for the Pants, I was so proud of him. Unfortunately this now means more tummy time for him. It really knackers him out but at least he is trying and putting the effort him, he's such a star.
I managed to get out to the library on Saturday morning and saw a leaflet for books for children with special needs. I asked a librarian where I could find them and she said they were in a back room and she would take me through. The back room, oooooh, it was like going into that special street in Harry Potter, (I have no idea what that street is called, I've never read the books, I just get dragged along to watch the films by Dan the avid Potter fan).
Anyway this other lady took me into the back room and there were shelves and shelves of books for special needs children. She asked me how I knew about it....I looked at her quizzically before saying, well I saw your leaflet. Then I thought, am I not supposed to know about it, have I found the holy grail of the library. She told me that she wished more people would use them but she doesn't get asked for them that much and doesn't want to put them in the children's section in case they get trashed. I said I would let the Child Development Centre know about it so that they can tell other parents before swiping four great little cloth books for the Pants. I will definitely be returning to the back room.
After my library adventure I met Dan and Zack for lunch. I enjoyed a veggie burger, Dan enjoyed a chicken burger and Zack just enjoyed the scenery before jumping out of his skin when the man on the next table dropped a knife on his plate. We had a mooch about the shops before Dan took Zack home and I stayed out shopping.....as he disappeared into Debenhams he shouted: "Will you back for his 3pm feed..."Oooh I don't think so, see ya." And with that I skipped off for an afternoon spent trying on copious amounts of clothes and ending up with one pair of leggings. It was great having an afternoon to myself but bless him, Dan was knackered by 8pm, this baby looking after business is hard-going for the uninitiated.