There are little things through out our lives that remind us of the challenges that Rett Syndrome presents. There are big things also...We deal with the big things every day. Right now we are dealing with the little things. Between now and next Tuesday I will be doing some reflecting. Tuesday January 27th, 2009 marks 3 years since we received the news that Caitlyn did indeed have Rett Syndrome. I wont get all into that right now...The focus of this post is the irritation that it can't be simple.
We have a pretty good deal going on right now for childcare coverage. I am with my 4th employer since Caitlyn's diagnosis. I left the first place shortly after receiving the news, because the Neuro scared us all to hell. (more on that another day) I stayed home with Caitlyn until the following fall when she started Preschool. Every other time I have had to leave a job, it has been because of something related to her childcare coverage. There was one gal who seemed to have it all together at first. It turned out to be not a good match, and left Caitlyn with a fear of having BM's. (a very long story) Right now we have a great set up! In the morning Eric drops her off at a sitters house. The bus picks her up there and takes her to school. After school, we have a wonderful friend that gets Caitlyn off the bus. Well this week our morning gal said she doesn't know if she'll be able to continue watching Caitlyn. Through no fault of her own, this pisses me off! If my daughter didn't have Rett Syndrome, I could sign her up for the YMCA at her school. I would get a 25% discount since I am an employee. Something as simple as finding childcare for my daughter sends my emotions in a whirlwind, and just really pisses me off.
On a happier note, Caitlyn's medication increase seems to be working for the time being. She had two seizures during the day on Sunday, and we haven't seen or heard of one since!!! Cross your fingers and pray with us that we will get a break from them for awhile.
*I will work at getting some new pictures in the next few days...
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3 comments:
I'm sorry for the childcare issues you guys are having. I definitely understand. We have gone through so many people in the past year. Although we get respite through an agency here in town, the turnover is still the same. I don't get it either, our kids are too darn cute for all this mess!
Awwww - how frustrating!!! I hope everything gets worked out!
Wonderful news about her seizures being at bay (knock on wood). And wishing you the best of luck finding a new child care. It stinks that even simple things have to be so complicated.
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