Tuesday, October 24, 2006
Biting my tongue
Half way through the intake assessment for respite, one of the women told me that 'I should count myself as lucky because Sheena doesn't have a feeding tube or need suction.' I bit my tongue very hard and took a deep breath. I don't think it is up to anyone else to tell you that you are lucky because your baby is sick, but hey, she isn't as sick as some others. It is like with her Down Syndrome. Some people have said to us that we're lucky that she doesn't have 'XYZ issue'. I don't think it helps.
The Commonwealth Respite lady completely renegged on our phone conversation yesterday and now says that we only qualify for 2.5 hours per week, and that it will cost $35.50 an hour. Back to the drawing board. I don't think even Madonna would pay that much to sit with bubba and make sure she is comfortable. I told them that there is no way that we could afford $35.50, so they said, well what could you afford then - so I said $10. She is going to run it by her supervisor and see if it will be OK. What a ludicrous system. I was so mad, but I decided to keep a lid on it, otherwise they wouldn't go into bat for me. I know other people with otherwise healthy DS babies that get weekly respite for $4 an hour!
Sheena was not in a good way today. We do a daily urine test for her glucose levels, and they were elevated for the first time today. I rang the Neuro, and he said that if they're high again tomorrow she'll have to have a blood test. Lets hope they're OK. Sheena had another one of her new jolting seizures today. It latest about 10 seconds this time, and my mum observed it too. They are are lot harder to watch than her spasms.
Here is Sheena last week in her shades.