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Feb
05

5th February 2016

Wow…. here we are again. It’s been a long time hasn’t it?

I will attempt to bring you up to speed with what’s been happening to me, seeing as I’m almost 5 years old now…yep, that’s right… 5. That’s really big you know.

So, you may remember that I had to have the pressures checked in my brain down in Oxford with Mr Wall an his team? Well in the two years (goodness, has it really been that long?) since I have been to Oxford a further 6 times. Yep they are doing a good eye on keeping their eye on me.

In June 2014 we had to cancel an appointmentĀ as I had chicken pox, then Beatrice got them too so in the end our visit to Oxford was delayed by ten weeks.

In September 2014 I was taken in for my pressures checking again. I was still showing signs of swelling behind my eyes, my seizures had ramped up big style and I was repeatedly banging my head against anything I could. I was taken to theatre, had the procedure and when I came round I went insane, hitting and kicking, screaming and shouting until eventually I was on the floor under the trolley with the sensor in my hand and just a wire sticking out of my head. Mummy and Daddy were beside themselves and off I went to theatre to have another one put in. This time they let me sleep for ages and bandaged my head so tightly so I couldn’t pull it out.

I was back on the ward and hooked up a few hours later, and I promptly fell asleep. By 9pm the sensor had stopped working, Daddy was ready to slap someone and Mummy was crying ….again! It was decided that I would go back to theatre again in the morning for a third one fitting. However, when Mr Wall and his team arrived at 7am, they said it was unnecessary, the readings they had from the three hours I was napping were enough to tell them that my pressures were very very high and surgery had now become a bit of an urgency. I was booked in for October 20th.

In October I had what they call a bi lateral calvarial expansion. Sounds fab doesnt it? I was in hospital for 9 days, most of it on the ICU and had a slow recovery once I was home… but hey, guess what? I could talk when I woke up, and Mummy says I haven’t shut up since ;)

In January 2015 I was referred to a doctor in sheffield for my epilepsy. Finally I was put on medication for it and could start to get some kind of normality. My dosage has been increased three times up to now and I still have the occasional seizure in the night (Maybe 2/3 a week) but the absences through the day are still very much present. I still wet myself if I have a good one lasting a few seconds or more, (this can be kind of embarrassing) and I still fall over…lots!

In September 2015 I started school. I have to be honest. I don’t like it. I don’t want to go and I make my feelings known every single morning by creating and upsetting myself (and everyone else) for agood two hours. I often arrive late, and my attendance is low, due to headaches, seizures, falls and generally being difficult.

In December 2015 (back at Oxford) The clinical psychologists decided that I am most definately on the autistic spectrum. I need that like a hole in the head…(oh yeah, i have several of those :P ) and a referral has to be done in Leeds. However, I can’t be referred to the early years unit as I will be 5 before I reach the top of the waiting list, and I can’t be referred to CAHMS as their system won’t take me until I’m 5. So once again we are waiting…. Always waiting and seeing. It gets a little dull after all these years.

So here we are, February 2016. Still waiting and seeing. Waiting for a full speech and language assessment, waiting for assessments to get help and support in school, waiting for referral to CAHMS, waiting for paediatrics to see me about my toes (which hurt). Just waiting.

Hope you are all well, and if you managed to get through this post well done ;) Its a bit long winded isn’t it?