Saturday 8th February

Hello everyone, just a little update from me.

My Mummy has been stressing so much lately it is unreal. She is like a whirlwind all of the time, constantly on the phone to people, dragging me down to the doctors and flitting around like a headless chicken. She doesn’t seem to achieve much to be honest. In fact, if I can trust you to keep a secret…. her standards are slipping drastically. The house looks like a bombsite most days, she doesn’t seem to be able to keep on top of it all. Mind you, we don’t help much….as she cleans one room we mess up two others, I feel a little bit sorry for her.

I have lots of things in the pipeline… next week I go back to see the lovely Dr London at the LGI. She specialises in ears and stuff. I cant hear very well in my right ear and as you can imagine that makes things a little bit difficult for me. I will have another hearing test and then speak to the Doctor to update her on whats happening with me.

I am also waiting for a referral to paediatric neurology. This referral was put in place by the neurosurgeons at John Radcliffe Hospital, but it has been upgraded to urgent by my GP this week as I am having seizures (thats what ‘they’ call them anyway) and lots of them.

Most of them are just funny little moments where I disappear off into my own little world, and can’t see or hear mummy. I sometimes wet myself and if Im standing up I fall over, which isnt very nice :(

But I have had four of what they call ‘grand Mal seizures’ and these are a bit scary. They last a lot longer than the little ‘flying away’ ones and I am so so so tired afterwards. They can hurt too and they always make me cry and want lots of cuddles.

So the neurologists (that’s a big word isn’t it?) will have a look into my brain and see if they can find out what is going on in there.

I am going back to Oxford on the 8th April. It will be a busy day (maybe two) as I am to see the whole team to update them; Have my head checked; Have my eyes checked again (Yuck!); have a full psychological assessment and have my bloods taken for the genetics people.

We now know that surgery will not be soon, unless my inter cranial pressure suddenly increases. This is because my lambdoid sutures are still fusing and could cause further issues later on.

So we are pretty much at a ‘lets keep a close eye on him and wait and see’ stage. ┬áIts a little bit frustrating. I know my Mummy is worried that I will have to have the surgery when I’m older and will be more aware, my Daddy tells her that I will probably think its quite cool and that my friends (and the girls) will all think I’m pretty amazing :D

Anyway, that’s where I am right now. The plan for today is to sit down and watch films and have a lazy day :D I might have a little bit of a snooze, its very tiring being awake in the night after a seizure ;)