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.

1 comment:

  1. I just LOVE these new photos of Holly - she looks so grown up and relaxed, like you say :) So glad you guys are loving the new place. From the kitchen photos, it's going to be amazing :D

    ReplyDelete