Sleeping is better. I feel like this has become a blog about sleeping but it's a big part of Zack's Zackisms.
We did go through a couple of nights last week whereby he went to sleep early but woke up at 2am. Oh no. I am not putting up with that. The going to bed late I can deal with as he then usually sleeps through, the getting up at 2am, no, I can't be having that.
Thankfully he has gone back to normal. Granted he is falling asleep on us after story time but hey ho you can't win 'em all. Although tonight he was carrying on so much that I just put him in bed and I think, he is fast asleep of his own accord.
Poor boy has been suffering a bit at the moment. He has been extra vomity. It was suggested by the doctors that we take him off his reflux meds as his vomiting wasn't as bad as it used to be. We have given it over a week to account for any bugs he might have picked up to cause him to be under the weather but in all honesty I think that the little bit of reflux meds he was having helped to keep his stomach calm. I think we go back on them and see what happens.
We are on half term this week. Half term. Ha. I guess my life now revolves around school holidays. How very strange. Zack has done very well at nursery. I can't say he has completely settled in yet or got used to it. Thinking about it all it's a massive change for him, he's in a strange place with people he doesn't know and no mummy. Given he has profound disabilities and one of them being a visual impairment I think he has done amazingly well. I think in a few months time he will be more settled. However I have seen photographs of him having a good time and one of them was with some lady dancer shaking his hands, plus the other week he went for a walk in the forest, played in the sandpit and went in the light room. He hasn't time to be sad.
Zack has a lycra suit. It looks a bit like a wet suit but it has reinforced areas on it to give Zack more support with his body. There is also extra support on his back to make it a bit straighter. The idea is that he will wear it all day every day (not at bed time though) to provide extra neuro-sensory feedback about his body and to help his core remain in a more stable position.
I will post a picture of him in it when I get a moment. The cutest thing about it all is that he even has a little special hole cut out in his suit for his Mic-key button. When he sits down his tubby belly squishes out of it.
So far he has had it on for an hour, two hours, four hours and five hours we are working up to eight hours. He feels very different when he has it on, definitely straighter and he sits better. Only thing is after it's come off he is more floppy than usual, perhaps this is normal, we shall see.
OOoh and excited....it's Halloween soon and you know what that means? Yes my annual opportunity to dress my children up in ridiculous costumes. They've already worn them to an early Halloween party but that doesn't matter it just means I get to dress them up twice. And after all that it's time for ridiculous Christmas costumes. If only there were more themed times of the year. Photos to follow.
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.
Monday, 24 October 2011
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