hindsight.....

Was laying in bed this morning wonering what we will think of this time of dr's appionments and operations for Deni. Will we think yeh we did it it's over and I won't change a thing. Or it's still going, will it ever end. Or it's over for now I wish I had know ......... before this all started. People say hindsight is a wonderfulll thing, but is it? I wonder if we will come out stronger for this or weaker and exhausted. Will we ever be able to talk about it freely without wondering what the other person will think if we say what we feel, will we be able to talk about it without that lump in my front threatening tears at any moment. Will we one day look at Deni and not see the wrong shape of his head and just see him for him. Will he be the same or will he be different? Will this end or is this a life long journey? Will his children have cranio? Will he be scarred from this? Will he have a fear of medical tests and operations? Will he be ok? How will our other children feel about this time in our lives? Will they feel that they were left out or abdnoned throughout this? Will they wonder why their family, their brother? Will they have a fear of any thing medical? Will their children have cranio? My son Terry said to me the other day "I feel so sad when ever I look at Denver, it's not fair. I don't know why I feel so sad, I suppose it's because I love him so much." I think it's fair to say that this time in our lived will have a lasting effect on all of us.

Pictures of Deni's head, so you can all see what I talk about and how it looks...

My Deni. You can see the head is quite a bit wider at the top and his fore head protrudes out a bit. Unfixed his head will never be able to grow wider only longer.

The back of Deni's head (which is the first bit I notices when he was a baby) You can see that it just kinda sticks out and is not smooth. And that the middle of his head is a bit wider than the rest. When you rub the back of his head you can feel that your hand goes over a bump and you can nearly grab onto the bit that sticks out.

Side view of Deni's head. You can see the lumps and bumps it is not smooth. His fore head sticks out further that the rest of his face and then the head dips down after the fore head. And at the back you can see that it goes out quite far and then at the bottom it goes out further. Unfixed his head will continue to grow out the front and the back.

Deni's pressure monitor on his brain showed that there is significant pressure being placed on his brain. His eye test have shown that the optical nerve is raised and swollen and so are the disks at the back of his eyes. If left untreated Denver will go blind, suffer more headaches, behavioural problems, loss of speech and eventually his brain will have too much pressure. His brain is currently trying to grow anyway it can but is fast running out of room.

First day at kinder. If you know what you are looking for you can see his head is just not the right shape.

My beautiful amazing boy. We are so proud of you.

Today wasn't what I thought it would be...

Today we are one week post brain pressure check surgery and I am still lost. Today we had his kinder interview with the teacher where the kids get to meet the teacher, check out the place, choose a new locker and you chat to the teacher about your kid what they like what they don't etc etc. Well today it wasn't like that for me he got to choose his locker and every thing but my time was spent talking to the teacher about Denver and his cranio. I just wanted it to be normal but it couldn't be. For one he has his bandage on his head. It's so funny people ask him ooh what did you do little man, how did you hurt your head? And he just goes matter of factly 'I just had some surgery'. Well they don't know what to say and look lost. So that's how today started at kinder. I knew that I had to chat to his teacher about his headaches, slurred speech,forgetfulness, never stopping motor in his brain, his sudden tiredness some days and that he might miss a few days due to appointments and further surgery. I just didn't expect to feel like this. I didn't expect to feel gutted and robbed. I didn't expect to be planning appointments and surgeries around his kinder. I didn't expect to still feel so scared. It makes it so real when you have to say it out loud to some one for the first time and explain it and go into detail. I don't want it to be real, I want it to be a bump on his head not the stitches holding together his skin where they cut and drilled a hole into my sons head.  I don't want to know the pressure reading of his brain and I don't want to know that he gets headaches every night. He had a bad day today headaches, the stitches are getting itchy and he was SO tired he sleep for three hours this afternoon and I've gone back to when he was a baby checking him all the time while he sleeps to make sure he is ok.
I don't want to know what I know any more, I don't want to think about it, hear about it , talk about it, I don't want to feel it.

Photo's of deni from hospital......

 Deni happily playing while waiting for his turn for theatre.

He wouldn't wear the hospital gown.

 



The morning after surgery. Teddy DJ

Came back from theatre too with a bandage and a lead coming out of his head.



He is watching the telly on his bed with his blanket and teddies. You can see his machine in the back ground there is his drip pole and the bigger machine is the one his brain is hooked up too, giving the pressure readings. 

Food makes the world a better place.

 He loved the never ending supply of ice  cream.

Room service.

 Resting at last. Still attached to the machines.

                                                I think he is happy to go home after three days.

 His bandage. They go in through the front side                                                    of  the head. So under there is his stitches.

 A fun day out at science works a week after discharge.