It is hard to believe that we might be on the other side. It has taken such a long time to get here, but maybe we are here.
We had our 12week post op appointment last Friday and they are very happy with how Denver's head has been healing and the shape that it now has. Of course there are things we are still watching but overall the news was good. Denver has had three infections in his suture wound and if he develops another they want to operate to remove and undissolved stitches that may be left and causing the infection. The ridge on the back of his head is still prominent and a little cause for concern. The main worry that if something were to hit that ridge the skin would split open because of the shape of the ridge. They are hoping that it will mould and settle down but if not the will do an operation to smooth it down. They also spoke about that they might want to go back and make his scar smaller as it is quite large on the sides and no hair is growing there at the moment, but its a wait and see. None of those things even compare to were we have been and feel so minor at the moment, they are not life threatening and can wait for another day.
So that's all the concerns but there if GREAT news. Denver is now helmet free, yep helmet free. He has gained so much confidence and you can see that there is more light and joy in his eyes, its amazing. He now thinks he can do anything with often leads to me cringing, but he is so happy. He is so happy that there is nothing different or standing out on him, no one asks him about his helmet, I suppose he feels normal again.
They are so excited that Denver is getting memory back. Not as excited as us though. That he can now remember things that happened before the operation and after is so exciting. To know that all those memories can be slowly accessed again is mind blowing and brings a tear to my eyes. He was able to read a book back to me the other day from memory which I took for granted with my other kids, but didn't realise how important it is until Denver could no longer do it.
They think that Denver should be able to play contact sport when he is older. Once again to know that he will be able to join in at school sports and games and not be singled out is a huge relief.
So it felt like a happy fest of good information on Friday. It feels so much lighter, it's so nice to hear good news instead of doom and gloom.
We now only have one appointment a month for a few months so that's going to be good not to be always going back and fourth. We are not out of all the woods yet, but its good progress and we are so happy today and Deni is beaming and that's what we did this all for and that all that matters.
We are off on a holiday, me and the kids to have some fun, relax and be normal, no doctors, no helmets but lots and lots of fun.

can you believe it's been 12 weeks.......

Yep it was 12 weeks on Tuesday, unbelievable. It feels like some of the time has flown and then that other times have gone incredibly slow. We head back to the surgeon tomorrow for our 12 week post op check. I am nervous but not as nervous as i have been before. I feel OK at this moment. But as I think about it more I am starting to get a little nervous.  But Denver looks great, he is not sleeping in our bed anymore he has moved in to terry's bed, it's a step in the right direction. So not sure what we will find out tomorrow or what they are looking for. I hope to find out more about the ridge at the back of his head where they think his bone and slipped and see what they what to do with that. I am very excited as in the last three days Denver has started to remember things, which doesn't sound huge but for his it is as it was something he lost. He remembered a story I read to him and could read it back from memory, he remembered a place we went to today that we were last at in August. So little things like that have started to happen and Matt and I are so excited. It's those little things you take for granted, that matter so much. He has just recovered from his third infection of the suture wound so need to get that checked out and hopefully maybe get rid of the helmet. He has been allowed to wear it less and I am starting to like and get used to the new Denver. His hair is starting to grow. He and I, well everyone for that matter gets very nervous when he doesn't  have his helmet on so if we do get to toss it it will be interesting to see how that goes for us all. So all I can do now is hope and pray. Tomorrow's appointment involves no physical pain for Denver so that's a bonus and a half, not looking forward to the next round of appointments. Here's some pictures of took of Deni yesterday to show you his head 12 weeks post op.

 Pre-op and 12 weeks post op very different shaped head.

His cousin Marlee loves the helmet and thinks she is pretty cool.

A Picture......

It's amazing the power that a picture can have. Picking Denver up from kinder on Tuesday and I spotted their place mats that they have with a picture of them on it and their name on the other side. On top of the pile was one that looked like Denver. I picked it up and just held it in my hands and starred at it. It looked like Denver but it didn't as well. I just kind of starred at it in disbelief. Was that really Denver. I even turned the place mat over to make sure that it was Denver that it was his and his name was on the back. I looked up at Denver and then back at the picture, it felt unreal. He looks so different now. I then had to put the picture down as I am sure I looked odd (more than normal). 
On driving home I got mad how could they not see, how could the Dr's not see what I saw. I hated that I was getting made about this again. But the feeling of not being heard and believed were all coming back up to the surface. But then I just got sad. Sad at the difference that there is in the way he looks. I hate to say it but I still like the old Denver more. That Denver was the love of my life for 4 years and now he looks different and I love the new Denver, but their is a but. If I could have the Denver that looks like that back without the cranio and the suffering I would. It hurts deep inside that he looks so different to me and I am amazed that I still feel so deeply about it still. It is hard as this journey is not over. His head is still changing after the op and there might be more surgery down the road we don't know yet. Cranio has changed Denver not only on the outside but on the inside as well, Denver often has daily struggles with something to do with cranio and all the medical stuff. We are constantly together and trying to quietly reassure each other. I think we are both exhausted.
Denver gives me the most incredible hugs with his tiny little arms and if I close my eyes and melt into the hug I can forget the cranio for that moment and that is when I am truly happy and at peace.

no one's picking on me....

I have just finished a book I have been reading and there was some thing the said in the book that really stuck a cord with me, it just made sense to me and was like a light bulb went on. When some thing like this happens to you people say many things out of the kindness of their hearts but it's not always the best or right thing to say and that's OK, i really liked the way the women expressed herself when explaining what was happening to their family. Here's what she said.
"There are three things that well intentioned people have already said to us that are not helpful. The first is this: 'God only gives you what you can handle.' I don't believe this. I have seen in my life many people who have landed in situations that they couldn't handle. I hope that we are strong enough to handle this, but i will never accept this as a test from god. I don't believe god tests people.
"another one that gets to me is that 'this is gods plan.' that theology doesn't work for us. We don't believe that god sits up in the heavens and decides who gets what tragedy or blessing. We are certain that god didn't do this to us. We just know it happened, and now we are going to lean on our faith, and on you to get through.
"The last thing that i would be happy to never hear again is;'something good will come of this.' i have no idea what is going to come of this, but i can confidently tell you that, regardless of how this turns out, we will never, ever look back on this event and say, "Good thing that happened.'
(Inconceivable written by Carolyn and Sean Savage)
 There it is it just made sense to me. I often found myself asking why us, why Denver, why me. But i don't think there is an answer. Maybe I should be asking why not us. We are no different to anyone else, we are not stronger, smarter, better parents, more resilient or any thing else we are just like you. We were not chosen, it is a comfort to know that someone is not sitting there deciding that yep they can handle this and this and this and well how about this too. I was raised catholic and I do believe in a greater being and in spirituality, i do not believe in all the teaching of the church. But I believe we are not alone and I know that I am not alone in this and will never be, but I also know that i was not singled out and chosen to have this challenge and that's a comfort to know that no one is sitting up there picking on me. Life is always full of challenges and lessons and i can only hope that we get through to the end of this life and journey still learning, still loving and still living.