We get the answer............................

I am so relieved that the ct is done and dusted but now I have stupid thoughts like what if he moved, what if it's not a good picture what if we have to do ita ll again. So now this is keeping me awake.

We get another letter from the childrens with his app, it's soon and an over booking again. Will just have to wait and life must go on.

18th November 2010

The app. is tomorrow and I am shittin myself I am alwful to be around, I am snappy, crappy, tired, irritatable and can't make any decisions to save my self. My dad has offered to go with us for the app tomorrow. I just can;t make up my mind I am trying not to think about it and if I say yes to him coming does that mean it might be bad news, what if they talk to him and not me if I make up my mind that means I have to think about it and I don't want to, I just want it to be over. Deni is sleeping with me more again now I think we both need the comfort and support of wach other, it's nice but matt doesn't like it, but I decide it what deni and i need so thats what we will do.

19th November 2010

What a day. I decided to take my dad at the last minute last night so it was a bit of a pain for him to change his plans but once I ask him to come I am relieved and happy that I made that decision.

In the waiting room I am checking out all the kids do they have cranio what do their heads look like. What do their parents look like are they tired or stressed do they look worried. All the other kids are wee babies and snuggled up with their mums so can't really get a good look and the other mums all look fine. What with me then I feel like shit and look like shit why do they all look fine, why am I the only one falling apart. It's  a long weight and I want it done.

Ever walk into a room and just want to back out slowly but swiftly. Thats what it was like this morning. The dr calls us in so we all walk over and the rooms are tine but we get aroud the corner and in the door and there are 6 dr's in there yep six bloody dr's surely there no here for us they must just be chatting. But no they shut the door before I can leave and we sit. They are all staring at us, I want to go home. Introductions are done this is blah blah head neurosurgon, this is blah blah head bone dr, this is blah blah head neurophysochologist ( is she for me or denver I could use a shrink) and it goes on around the room. I have never been good at names.

The head guy ( I know him I think I have seen him on telly on a doco) says yes the x-ray shows that denver has craniosynostosis. Is it ok if we all have a feel of his head. Why ask me it's not my head. So i ask denver and he says yep and goes and stands in the middle of them all. One of them is watching deni closely and taking notes. They all have a feel and then deni retreats to me. They explain a bit about cranio and it just flys over my head. They pu the x-ray up, yep it's a skull x-ray they show where it looks to be joined, yep got it. But then his one of voice changes. Unfortuantly the x-ray shows copper beading of the back part of denver's brain and he points to it, thats the pretty part I think. He goes copper beading means that there is pressure on the brain as that only results after the brain is under strain for a while. He has quite a bit at the back right where i first noticed the funny lump it looks to take up nearly half of his brain.  Does denver get headaches, yes a few more lately and he blinks his eyes alot yep all to do with the copper beading. He says the next step is to do a ct. No no no we have done one oh my god it didn't work he should have had the fucking general now we won't get the answers. Thank god they find the ct, it pops on screen and i look from the dr to my dad. They have both slumped in their chairs and the look on their faces says enough. I don't need to be told it's worse then they thought. All the dr's are looking and the image moves around on the screen I show deni look there is your special video denver is getting annoyed so many people in one room and he starts to play up the lady takes more notes. The dr slowly turns around. I don't want him to talk I don't need him to talk, i saw his face and that was enough. But he talks and says the ct scan shows that ALL of deni sutures are fused, they have all gone together which explains the amount of copper beading. It is unusal to have them all joined, but they are. Deni starts hitting me softly thats very unusal for denver he can feel the tension in the air. The lady takes more notes. They start talking about how he operation will be much bigger and much more complicated. Because of denvers age his bones won't re-grow and re-shape. We normally do it before they are one so their bones can recover and re-grow. My dad says how will you do the operation. He slowly says we will cut the head from ear to ear over the top fold away the sking and then cut the bones along his eyebrows down to on top of his ears and around to the back of the head. We then lift the skull off and try to re- shape it. Then he says we are virtually panel beaters to his skull to try and re-shape it. Then we put it back on as best we can and stitch up the head. He will have alot os swelling his eyes will swell shut he will have alot of pain. We are told he will need to wear a helmet. He will be in intensive care and  then on a ward. I ask how long does this take? 6-8-10 hours.  What about his brain? Yep his brain will be exposed but it will be taken care of and he will be watched very closely. The biggest risks are to his vision and behaviour. We have had 2 deaths over the past 7 yrs at about 3,500 operations.Denver is smuthering me in kisses and big hugs I can't deal with it I don't like it I want him off me, I give him to matt who is just looking at the floor and not saying any thing. Dad is asking more questions, I am glad he is here. I ask what about sport? Denver may have some holes on his skull from the surgery so he might not be able to do any contact sport untill we can fix them up in a few years. My first thought is this guy has never seen my kids wrestling on the floor at home is he kidding, no contact? How the hell do you have no rough contact in a house with five kids and you let the kids play outside and be kids. Denver is agitataed and crawls under the table and chairs he is not himself the lady takes more notes and I want to shout at her STOP this is not him we are locked ina  tiny room with all you guys Stop taking your notes this is not him. But I can't. What about the future? They tell me that they are suprised denver doesn't have more behavioural problems. They don't really answer my question but he does say it's ok some do go on to become lawyers and doctors. I don't want a lawyer or a doctor I want my son. I want my son just the way he is. I feel they are not telling me the full story. Bu I probably couldn't take it in any way. They are still talking I have no idea what they are saying. All I can do is the look at the main dr's head he is shinning bald and has the most beautiful round perfect head, why is it so shiny it is so perfect and round, I picture myself getting a hammer to smash that shinning head just once so it's not so perfect and round I don't think you should be allowed to talk to me and other parents with such a round, perfect shiny head. I think I am losing my mind. That lady is still taking notes. All the doctors expressions have changes they now look at us with sympathy no one is smiling any more. I ask is this the only option? They try to not say a straight out no. But if we leave it it will only get worse, there will be more pressure on his brain and one day his brain won't be able to take it any more, so it is really your only option. I can't take in any moe. So I hear we will be sent letters with app. to get some tests done to help decide when to do the op. He says I want them all done by feb. so we can decide. Any questions. Hah. Ring if anything changes.
We leave that women is still taking bloody notes.
We get lunch and go sit out in the back garden trying to talk about it but not knowing what to say. How do you sit around a table eating lunch chatting when you have just been told they are going to cut your sons head open and take his skull off bash it into place and then put it back and hope that he is ok. My Dad rings mum to let her know what is going on I say I don't want to talk. I watch him and when he starts to talk about the app. he moves away so we can't hear and then he moves so we can't see him and thats when it hits me, I know it is bad very bad worse than any one had even thought of. I lay down on the hard wood bench and fall into a deep sleep.