Monday, 3 August 2009

Sleepy Honk

The seizures came back. Though we were lucky enough to experience some seizure free days not long ago, they've gradually been creeping back.
Yesterday me n da honk were in asda, when she had a prolonged seizure lasting about 20 minutes. I just held her, and missed the fact that even a shopping trip isn't normal. She had a few more spasms yesterday evening too, so when the evil seizure monster reared it's ugly head this morning , I decided it was no longer a glitch- we needed to up the meds.
Hope has managed on 4.5 ml of vigabatrin twice daily for weeks now, but we had the go ahead to give as much as 6mls. This morning I gave her 5mls. And don't I know it. She's slept all day. Waking (just about) for feeds. I miss her on days like this. I miss her sparkly blue eyes and loud shouts and funny laughs. I hope she's more herself tomorrow. Today
I am reminded of how powerful these meds are. Just an extra half a ml can have such an effect.

We've been back to Borders closing down sale. I scoured the shelves for more special needs parenting books. I found another 2. My collection is expanding. They do help though.
Nearly finished blue sky July. A beautiful book!

After that, I really really need to get back to uni books. I've really slacked recently. So whilst my fellow students are enjoying a summer break, i'll be playing catch up. But I need to do it. I want to. I'm enjoying the course- inclusion. Gives me a different perspective on things. I'm sure it'll come in handy in the future. Perhaps if I decide I want H to go to a mainstream school?

1 comment:

  1. (((((Caroline))))) sorry to hear the seizures are back and that you'vee had to up Hopes meds, give her a great big cuddle from me and Sunshine, love and hugs xxxxxxxxxx