Wednesday, November 17

Another seizure :(

Holly had another seizure last night - this was a big one. It went for a few minutes and she turned blue for a bit. I rang the ambulance and they cam just after she'd stopped fitting. It was shit, horrible, aweful seeing her - you just feel so helpless. Even if she is fitting, there isn't anything that anyone can do - even at the hospital. Its just crap.
We got to the hospital pretty quick, she was just lethargic in the ambulance, but by the time we waited for the doctors to come around and check her out, she was totally fine. She was her usual happy self, just wanting dinner!
Very scarey.
I think that after having her so well for such a long time, we've kind of become a little compacent that she is going to be fine. It really put the wind up us both. I think anxiety is a little high because we are approaching her birthdya too - she wasn't even supposed to live this long, so its a bit worrying. I'm sure she'll be fine, its just a bit of a fright thats all.

Saturday, November 13

far out its been ages!

I can't believe its been since September that I posted last. Crazy.
Well, since September, we've just been settling in to our new house really.
Started with our new physio from Specialist Children Services - not overly happy with them, but it just adds to the excitement of CPEC. The physio from CPEC came out last week and did a bit of an initial assessment of Holly. She showed us another way for us to get Holly to roll over so she can do some tummy time and help with her head control. Her head control still isn't very good, but we'll keep working on it. She's been having quite a lot of jolts lately, they happen really often. When we went back to the neuro a couple of weeks ago I spoke to him about them, we are on another type of medication to hopefully reduce them, but it hasn't done anything yet - but we aren't on a full dose yet either. We are working our way up to a full dose, we aren't even half way there yet. We should be on a full dose by January. She had her first full seizure about a month ago. We were staying up at my Dad's while we installed the new kitchen at our house. I had Holly on the bed while I changed her nappy, just as I looked away she did a jolt - which is 'normal' for her, but then she started to make a funny noise and I realised it was like she was just continually jolting and couldn't stop them. My heart was just pounding. I didn't really know what to do. My phone was in the kitchen and I was in the bedroom - I didn't want to leave her, but I know your not supposed to pick people who are having a seizure up or touch them other than to keep them from hurting themselves. My heart was just pounding. Its really hard, even last night, she woke up screaming and L and I think that it was probably a seizure that woke her up. There is absolutely nothing we can do about them, we are giving her her medicine, so there isn't anything else I can do.
Other than her seizures though, she has been just awesome since we moved - she is just so much more settled and relaxed and not crying and happy. We are getting heaps more smiles out of her, she is very responsive to you when you talk to her, she either coos back or smiles. Its been great to see. I personally think its cause I'm a lot more settled. I've got more family and friends around me and I can see them more often and I don't feel as isolated. I'm more comfortable in this house - especially now we've done the kitchen and made the House more like our own. We all have enjoyed the move, L is enjoying being closer to training and he's enjoying the change of scenery. He's been working particularly hard on the house.
We've really been working hard to get the house up and ready for Holly's birthday party - I can't believe she's going to be one. Its unreal. What an amazing year. So many tears and heart ache and joy and love.