testing begins....

31st December  2010

It's new years eve and everyone wants to celebrate the end of one year and the new beginning of what everyone hopes will be a better year. I am scared of what the new year will bring for our family. We had a shocked of a year in 2010 with Matt having his heart attack, me trying to get better after being unwell for a while and Denver being diganosied with cranio. So why won't I look forward to the new year? Because every day brings us closer to the day that we hand denver over to the surgens. I know he needs the surgery but it makes me scared and sad that we might lose him as he is, but there is no option, I  know.
Denver headaches have settled down at the moment but his behaviour is hard, it is exhausting and so is he as he just can't stop Matt and i sometimes just look at each other and say it's his motor. That seems to make it better that we have a reason for this. Denver speech is still going backwards we spent three days at my uncles farm over christmas and when we got there he could say uncle robert and by the time we left three days later he couldn't say it any more. It is heart breaking and we just have to try and figure out what he is saying. It is great to sit and watch deni run around with his cousins and have a ball, but I know find myself looking at every kids head to see what shape it is and if it looks round or not, I can't help it. In my job I see alot of babies and I find myself checking out there heads. I am so thankfull for my job as it is the only real time i can tune out from cranio and it is such a welcome break.
We go away to the beach soon and I can't get excited deni has app. during the time that we are there.
The new year has begin, so away we go.


9th January 2011

I find myself at the beach again having a quiet moment. I am glad to be here, it feels right. Tomorrow we head to the children hospital for a full day of tests, don't know if we will find out anything tomorrow but it feels really good to be doing some thing to be active in his treatment rather than just waiting. It will be a long day but thats ok. We see the neurophycologist tomorrow to see where denver is at I am intrested to what she will say about his development and his speech, lets hope deni is up for it tomorrow and then he has a brain pressure test which they some how do through the eyes, it will be intresting to see. This test will help them decide when they need to do the surgery depending on how much pressure there is on his brain. I feel strangely calm and ok only a few little butterflies but thats ok. I love that I am at the beach again it a wonderful distraction.