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.
5 comments:
awe, look how cute she is in her sunglasses!!!!
OH TOO CUTE!!
Very cool. Quit biting your tongue. The only person it hurts is you.
Happy happy.
Wow! I can't believe she had the nerve to tell you you were "lucky"! She had no business saying something like that. You should have said "Actually I would much prefer having to deal with "just" a feeding tube then watching my daughter have seizures!" Maybe that would have shut her up.
I'm so sorry to hear about the respite! How could they say one thing to you on the phone and then something else entirely the next day? Doesn't make sense! And you have to pay for respite? I thought respite was a service provided for you! At least here in our town it was through the EI center, we could use it whenever we wanted and didn't have to pay for it. Good grief I can't believe they charge $35 an hour! That's ridiculous! Who could afford that? I hope this gets straightened out. Maybe you could talk to a supervisor or something?
I agree- she does look cute in her shades!
I say appeal their decision. Sheena has some valid health concerns that require someone professional to provide her care.
Respite shouldn't cost you so much--it's just ridiculous.
Don't bite your tongue--fight for Sheena.
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