Wednesday, 5 December 2012

Today

Jayden's had his second day of steroids and already showing signs of some of the side effects. A few tantrums today that lasted quite sometime over something nobody knows what about, least of all him. He's also eating more but thats a good thing. I'm so pleased we changed his NG tube as he's not having difficulty eating with this one but he did with the larger one. He still hates it though and wants it out, so do we but a few more days yet. I'm hoping when the antibiotics stop which should be Sunday night , then we might be able to take it out as his steroid dose will be down to 1ml and that should be ok to get him to take by mouth. Need to check with Nick about that when we see him this Friday.

I can only hope the steroids do their job and relieve him from vomiting all the time and more importantly prevent anymore brain damage. Nick suspects he will see more at the next MRI but he can't be certain. I truly hate this guessing game where nobody seems to really know for certain about anything. a lot of medication that has no guarantees or certainties. plenty of nasty side effects with the sentence constantly being said to us "the probable benefits out weigh the risks". With the risks often being extremely nasty. thats got to make any parent nervous and we are no different from the next.

Im pleased we never had to go into hospital today although we have an appointment to see nick on friday, its early so hopefully we will be out before lunch. The kids went back to school today also after two days off still recovering from that nasty virus, I still can't believe I didn't get it and am so damn grateful for that.

So today I tried to get away to do some Xmas shopping in the morning and left Jayden with Danny but it wasn't for long as Jayden doesn't cope very well if I'm away too long. He's getting better but I think with everything that's happened he's just quite a bit shaken up and just doesn't want anyone but me a lot of the time. Which is lovely to be needed so much but difficult when I have two other kids who need me too and other things that he just can't be on my hip for. Going to the toilet is one of them and does he get upset if he can't come too.
Funny little man, I do love him so and when he cried while I took a shower today I told him how I understand how hard it must be for him and that he's been through a lot and he's so brave and clever and how proud I was of him and it wasn't long before he felt better which was also about the same time that he discovered a slater bug on the floor. once he discovered that, whatever it was he was upset about was gone. I'd like to think it was my speech but I think the slater bug won hands down.

I am so very proud of him. he really is my little hero. He's been through so much and he just keeps on going, almost always with a smile.

The other night when he had his CT scan and cried through the whole thing I told him how brave he was and how proud of him I was and he said with his little voice, through tears "me brave mummy". I was so touched by him saying that as it was the first time I've heard him use that word and it is just so damn true. I can't wait till he really knows and understands what that word means and can hold his head up high knowing he is the bravest little man to me and so many others.

We are now on our way to
Danny's mums house as we missed her birthday party last week because everyone was ill.
It's so nice to be able to go somewhere as a family. Boys are arguing in the back and Layla's listening to her iPod - a bit of normal. Even with doing something that's so normal for most families I still sit in the front knowing my son is not your normal two year old. That niggling thought of what the future may hold and the feeling of sadness that comes with it, will always be with me.

Its a few hours later and everyones asleep. We had a lovely time at Danny's parents house and all the kids fell asleep as soon as their heads hit their pillows when we got back. Danny's snoring as loud as can be as per usual and I'm still awake.
The drive home was long but not too long and I sat with Jayden in the back because he was getting tired and grumpy. He chatted away to me all the way home. not everything I could understand but most of it I did. We talked about everything we could see on the road and what we drove past and about dad driving the car. "Me drive one day mum",he said. I felt a deep pain in my heart when he said that and i real need to burst into tears. i didn't and told him he would and he would be a great driver. My heart truly breaks when he says something like that or I see him watching bigger kids riding bikes or kicking a football. I know they are or will be his dreams and it breaks my heart the thought that he may not be able to fulfil them. They are such simple dreams. Not much to ask? No expensive car, house, boat. Just to be able to get old enough to ride a bike, kick a football, run! And drive a car!
I will always keep hoping he will get to fulfil those dreams, and do everything I can to make sure that it happens for he is truly deserving of that. For everything he has been through and every childlike him, they deserve that.

Below is a picture of how he sleeps-sideways across our bed. Beautiful:)



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