It snowed. Zack and I have cabin fever. Well I have, Zack quite likes the warm as do the cats who have developed an inability to go outside in the snow. One in particular, Willis, does the best impression of an RSPCA advert that if I didn't bring him inside the neighbours would think he was suffering abuse. He sits outside in the snow holding one paw up and shivering, he had only been out for 30 seconds!
Zack and I marched up the garden when it was snowing. The Pants liked it, probably because the whiteness made everything so bright. He didn't mind the snowflakes falling on his face and did his best at keeping his head upright to take it all in. He wasn't for building a snowman though. No, back into the warmth to play with his new favourite toy, Mr Dog.
I showed Dan how much he liked his doggy toy and how he smiled at it when he made his barking noise. I overheard Dan asking Zack if he liked it and then saying this doesn't mean you are going to get a real dog you know. Dammit.......I thought I had sneakily found a way of getting a Puggle. Zack and I will have to work out a new plan.
School phoned up to tell us that they were closed because of the snow. This made me giggle, not because they were closed just because Zack's school had phoned up.....he's only 11 months old!! We shall go next week though.
We have started Zack on his Vigabatrin. So far so good. But it is only a small amount so we will have to wait and see what happens when we increase it next week. His seizures have not been very many about two to three a day and when he does have them they are quite subtle.
I can't believe that he will soon be one. When you take stock of what has happened to him you can see how very far behind he is compared to other children. When I think about this it makes me sad but then Dan reminds me of all the things he is doing, things we didn't think he would ever do. For example he without doubt knows both of us. Probably me more than Dan but then that's because I am lucky to spend more time with him. I think, but can't be sure, he is starting to understand his name. It may just be my voice but he will look at me when I call his name. We didn't ever think he would smile or laugh and he does. He shows pleasure in things and shows interest and enjoyment, it is subtle but you can tell the difference. He is sitting up on your knee and can sit there whilst you support his lower back. He doesn't cry at tummy time any more and sometimes manages to push himself up. So I suppose whilst these are small things they are good steps forward.
I am also starting to realise that whilst some areas of the NHS are good there are others that are not so good and you don't always get the help and support you need. Sometimes it is assumed that Zack is similar to other children and you end up getting grouped as one. This is no good. Not all children are the same and I wish that they would try and consider the individual rather than the masses. I could go on but I don't want to turn into a rant.
This isn't my blog, it's Zack's. Zack arrived here seven weeks early, he had no heartbeat and wasn't breathing. He suffered catastrophic damage to his brain, he has cerebral palsy, problems with his hearing, vision and feeding. Our lives are both challenging and extraordinary. He is a gift. I hope that for whatever reason you find yourself reading this blog it can go some way to help those in the same situation and some way to remove the cloak that covers parenting a child with disabilities.
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