Thursday, February 17

Is this the end of seizures??

Gosh I hope so.
We went to the neuro last week, showed him some video of Holly's seizures and he gave us a new medication. We started it on Monday night. She'd been having 3 or 4 a day, up to about 5 or 6 minutes long. Come Tuesday, not one! She didn't have a seizure at all on Tuesday, she had plenty of her normal little jolts, but no big ones. In fact, she hasn't had a seizure since! We are very happy! She's been a little sleepy and she's struggling to drink from her bottle, but we are perservering. I'm hoping she'll get used to the drugs and come back to her usual chirpy self, and I'm really hoping she'll take her bottle again quickly. I'm keeping a very close eye on how much she is actually drinking.
Tuesday we went to our orientation meeting with CPEC. The other parents were there, two bought their kids, one other lady and us didn't. They seemed nice enough, hopefully they are nice people, we are going to be spending a bit of time with them I imagine. I hate to judge books by their covers and I'm trying to keep an open mind that these people WILL be lovely!! Time will tell. After meeting all the other parents, the physio had arranged for the wheel chair company to come out and measure up a chair for her. They came with a prototype and we sat her up in it - she absolutely cracked it - but it fitted her well. All the other therapists were there at the same time and they were all commenting on how good she looked in it, as in, how well it fitted her and she could sit up properly etc. It just happens to be the most expensive one - I have no idea where we are going to get the money from, but if its what she has to have, then its what she has to have I guess. The only saving grace for it is that its designed that it will do her for about 5 years, so at least we won't be forking out for wheelchairs every one or two years. They are going to try to get the chair part to be detachable from the base so we can have her in it inside and outside. Fingers crossed it all worked out.
Wednesday I went back to my eye doctor, bit of a bugger that my left eye has now got all the problems that my right eye has. So everything we've been doing on my right eye for the last 8 years we are just about to embark on for my left eye.
Today was good, we went to very special kids and had a look around the hospice. Its really cool, there are 8 bedrooms but they only take 6 kids at any one satge. There is a really big main living room with things for the kids to play with, there is a sensory room and a music therapy room - its all just really positive. We had a quick look around the parents house too - a great fascility if we ever need it - unlikely, but if we did its there. They have a nurse on 24/7 as well as carers and they have specific doctors on call if there is anything that the nurse can't take care of. Its just really reassuring to know that she'll be taken care of.
Its been a pretty full on week so far, we've been busy all week and we've been staying at my dad's cause our floor boards are getting sanded and polished. Its always nice to come home when you've been at someone elses house, no matter how nice their place is. I'm looking forward to a big long sleep in my bed!

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