I have spent most of my day working on finding a respite care provider for our family. We have been approved for a waiver here in VA which allows us a certain number of hours per week of additional help. While the idea of having an extra set of hands is appealing, the process of finding someone who we trust and want to invite into our family is quite another. I wish that I had a friend or family member in the area whom I could hire. I would also love to find a college student who is interested in special education and looking for part time work. Unfortunately, I have neither, so I am forced to work with an agency. I am just not having a lot of luck. And I have only 30 days or I have to start the entire process all over again. Ugh!!
Waverly is definitely feeling better, but she has yet to get her appetite back. I am having to force her to eat and tonight she wouldn't even drink. I am not sure if she is still recovering, just exhausted, or if it is something more serious. Kids with Sanfilippo have an incredibly high pain tolerance and they are unable to communicate very well, so it is usually a guessing game and intuition.
Tomorrow I have a meeting at Waverly's school. We are beginning the preparation for kindergarten. Wow!! Our first meeting should be pain free. I have requested that she be reclassified from simply "hearing impaired" to a catagory more fitting of her disease. A new classification should allow me to get her better services and assistance...I hope.