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.

Hospital......Day one, Day two....

We are here and waiting room full of hungry tired kids. Denver is being a real champ and just playing why he waits, although he does remind us of his hunger often, but far enough. Waiting is hard.
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It is friday (I think) and I am sittin next to Deni as he goes off to sleep, I have a raging headache that i have had for ages, but at least I don't have leads coming out it. It is amazing watching the numbers change on the machine they tell us what the pressure is in his brain, one has to wonder how that is possible and who on earth volunteered for the first one. It is an addiction watching the numbers go up and down, I find myself looking at him and seeing what he is doing then looking at the number. He has great stats during the day most of the time in the normal range but when he goes to sleep it's a different story. There is nothing like being woken up by an alarm on the machine that is attached to your son's brain, there's a flashing orange light a loud awful noise and the nurse comes running in. And we just watch the numbers watch deni and see what happens. It's amazing what kids can sleep through.  He just keep sleeping and they said that when his pressure gets high he wakes himself up slightly which lowers the pressure and then goes back to sleep, they think he probably has a  headache most nights but is so used to it he sleeps through it. He is so cheeky with the nurses. I think he thinks it's not to bad here he gets to watch telly, has his own remote and can choose the shows, food gets brought to him on a regular basis and he gets to choose it off a menu, mum is with him all day and night and he gets visitors who bring him surprises. What more could a four year old want.

The thought of getting ready for hospital

So I have to get us ready for hospital which means I have to start planning and I hate planning. So I have written a list of what we need to take it looks like were going on a vacation pj's, books, DVDs, pillow, blanket and everything else we need. Looking at the list we must be going for ages but it's only 2 nights. But they will be two long nights. The fear is the unknown. How will he go with the general? will there be any problems in surgery? will he wake up ok and not full of fear? Will he be ok with the leads and monitors? Will he still trust me after we do this? Will I be ok? Will I still breathe when he is in surgery? Will I cry when I see him? Will I be strong? Will I survive this? I am scared and this surgery is tiny compared to the one he is going to have. I have a list and that is supposed to make me feel prepared for this trip. I have organised the kids. I am organising my husband. Then I have to organise myself.

Last night we danced.....

Last night we danced and it was lovely. We made an unplanned stop at the RSL to have dinner with Matts pa and there was great music. So after dinner the kids and I got to some serious dancing. It was fantastic just to dance and have fun with the kids. Towards the end of the night I sat down to have a breather and was watching the kids dance when I was watching Deni dance and all of a sudden I thought this is the last time we will be out together as a family before they change him and touch his head. What a strange thought at a strange time. On Thursday after eye u/s, eye tests and holding my son down screaming for the eye drops and then seeing the neurosurgeon we where told that they want to cut a hole in denvers skull put some special monitors on his brain and have the monitors connected to leads that come out of his head that are then connected to a machine that will read his brain pressure. We have to be there for 2 nights  3 days. It's freaky. He will have leads coming out of his head attached to a machine and be awake for 3 days with that. Heaven help us. How will we do that? He is four not really the laying still kind.  We are doing this on Thursday, yep Thursday. What if they don't get the answers they need? What if some thing goes wrong? How will we do this? Some people have said why does he need that? Why don't they just do the big op? Why do we have to do this? I feel stupid saying cause they said so. It was only after I started telling people and people starting questioning the need for it that I started to get confused. I thought I totally understood it and why it was needed when talking to the neurosurgeon and was only once I walked out and started talking that the lines got blurry. I know with in me that it is needed. But his head I am so sad that they will mark him, cut him change him. Will we be ok we have to be don't we?