Welcome to my blog about my journey through cranio with my youngest Denver. I write this blog to benefit myself by getting my feeling out and hope that someone may read this and get an understanding about what we go through as mums dealing with cranio. Some people thimk the journey of cranio ends after the 1st cranio surgery but that is far from the truth, this is a life changing journey that goes on for the life of the child and their family. I often write things I would never have the courage to say out loud to anyone, often the feelings are very raw and honest. So join me on my roller coaster ride through cranio and lets get through this together.

Saturday, August 6, 2011

Life goes on....

Life is still going and as always it has it ups and downs. Denver is loving kindergarten and being back with his friends and feeling normal now that he doesn't have to wear his helmet. He has the sparkle back in his eyes and is confident. He is going so well, but sometimes it is as though we have gone back in time and we are back just after the operation. If he bumps his head even just a tiny bit, the fear and trauma that that can bring Denver is huge and normally takes quite alot of hugs and soothing to reassure him that he is OK. he had his first fall at kinder and knocked his head. His teacher was wonderful and sat him down and made sure he was fine, before calling me and having a little panic attack. He was fine and we all survived.  I overheard Denver having a conversation with Terry in the cars about operations. He was explaining how the first one hurt and wasn't nice but that the second one didn't hurt and they took all the hurts away and the bad bits so the second one was much better. So that was so nice to hear and really reassuring that he was going OK and wasn't angry about it at all, or untrusting.  His hair is growing, oh so slowly but growing. 
The only down side is we are still just waiting and seeing to make sure his brain is OK. He has had a few things that are worrying me. He has had a day sleep every day this week, which normally wouldn't raise alarm bells so others but for Deni it is a thing to watch as it may mean he is not sleeping well at night again which could be due to brain pressure. yesterday we were painting and having fun and he could not remember the colours. Denver knows his colours but he didn't yesterday. His favorite colours are orange and blue and he couldn't remember their names. Oh my heart broke, but in true mummy style we just move on and keep painting. But i am now on high alert (as if i never was). The other thing i am worrying about is school next year. With all this going on is he going to be ready, is his brain going to be able to cope, will he be OK? It is a struggle between wanting him to be 'normal' and go with the flow and do what we had planned for him or stopping and going no, our kid has special things we need to take into consideration. Denver is so excited about going to school next year, if we decided to keep him in kinder for another year it would be a blow for him. So...
But Denver is here and doing well and so is the rest of the family.
We only have to go to the hospital every three weeks now so that is such a welcome relief. For the most part our days are 'normal' just like any other family. I am getting used to the new Denver but sometimes my heart cracks when I see his scars and wish it could be different for him. But it's not and we are learning to live with cranio being part of our lives.