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.
Thinking of you - hope you're coping
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