For the most part, Sheena decided not to moan/cry today. She was far from happy, but she was quiet most of the time which was fantastic. We did make a lot of changes to her medication today, and she is now on Soy Formula.
She had another one of her 20 second seizures. Since she started those earlier this week, she has had one a day. Every time she has one, I look at the clock and start counting. If it goes on for 5 minutes its very serious, and its then time to call the ambulance. Of course, 20 seconds seems like 5 minutes when I'm watching my beautiful baby girl loose control of her body, so I have to watch the clock. It usually takes me a while to focus on the clock, as I feel really frantic. I have to say the time to myself several times before it soaks in. Its 11.08, 11.08, 11.08 - yes 11.08.
I am still sorting out the respite situation, and I have made a bit of progress. They've reduced the rate from $35.50 to $9.65 an hour. We can handle that. We are allowed 5 hours a fortnight moving forward, but for the first 2 weeks we get 10 hours a week. It is not clear if we have to pay at all for the first couple of weeks, I get different answers depending on who I speak to, so I'll just see.
Here is Sheena and I back in September - I was heading off to work at the time. She's got frills on her top, pants and socks - ohhhh.
2 comments:
I will be praying for you and Sheena. She is adorable!
Hey that's great that you got the rate reduced. Didn't you tell them that you can afford $10. You should have said $5.
Have a great weekend.
Cheers,
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