Wednesday, January 19

Smiles and giggles and all things nice....


Christmas is over and done with, its the new year. I haven't posted in ages cause L has had some time off work so we've been busy catching up with friends and going on day trips to the beach and things. It was a nice relaxing break.
Holly has been having these different types of seizures since Christmas. They aren't quite tonic-clonic but they also aren't her usual myoclonic. Its like a combination of the two. They are lots of myoclonics in a row. she will do up to about 50 jolts in a row, she purses her lips and her skin goes all blotchy while she is doing them. I emailed her neurologist about them the other day cause I videoed her while she was having them. He has increased her medication and told us that if it doesn't settle we can increase her meds again in two weeks. We see him in feb anyway, so its not all that long to wait thankfully.
We have been getting the most beautiful smiles, and best of all - giggles! They are gorgeous. She really is a very pretty little girl! She has been really happy and contented lately and its been heaps better. I've also started to put her into a really strict routine. She was absolutely ruling the roost here a while ago and not going to sleep until 9:30at night - that is waaayyy too late for a one year old, so I decided that she is going to be put into a routine more suitable for a one year old! She is having breakfast at set times, and having a nap at set times and doing things 'normal' kids do. Its taking a lot of patience, but she is getting there. I'm finding it better too cause I actually get more time for me during the day. Instead of her having 4 twenty minute naps, she is having decent 1 hour naps. She is a lot happier in herself cause she isn't tired and grumpy.
We've got our initial assessment at CPEC next week. I'm a bit nervous about it all, but I'm sure it will be OK. I guess I'm just nervous that we are going to find out about more things she can't do or won't be able to do. A friend of mine said to me once that even though its great we are at these great centres, we do need to be prepared that we are still going to be the worst. There will still be kids who are more capable than Holly and it will still hurt that she can't do a lot of the things that the others will do. I guess that's something we are just going to have to get used to!

1 comment:

  1. Im sorry to hear that Holly has been having more, different seizures.. Hope the increase in her meds help. Good on you getting her into a routine, it does take a bit of practice, but your right, you will get more time to yourself every day to do things that you need to do.

    You know that we had our CPEC app already and I really enjoyed it. I am really excited about what Ellie will learn & yes there may even be things that she wont be able to do soon or ever... I am aware of that, yes it makes me sad, yes it scares me... but there will be so many things she will learn, and im sure Holly will too

    Good luck with your appointment

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