I love blogging and the opportunity it presents to record our little family's history, especially considering we don't scrapbook or write in journals. However, I have hesitated to blog about some recent events because I am having a difficult time staying positive!
We were hoping that putting Brady on seizure meds would decrease the frequency and/or severity of his seizures but unfortunately the opposite has occured. He has had 2 to 3 seizures per week lately, some of which have clustered together and turned into grand mal seizures. When this happens we administer a valium suppository and it then takes Brady two or three days to return to normal activities like walking or going to his usual therapy appointments. He is averaging one or two good days a week when he seems like himself.
We are becoming more skilled at handling each situation as it arises and no longer feel the need to call the paramedics. However, each 'event' is still incredibly frightening. It's also becoming frustrating to cancel all of our plans at the last minute and continue to sleep with Brady during all naps and throughout every night. We are finally admitting that we need some help and are starting the process of hiring a respite care provider. Respite basically consists of babysitters who are trained to care for Brady's specific needs and could watch over him while we are home and need some rest, while Troy goes on errands during the day, or in the rare possibility that Troy and I could go out on a date. It might sound insane that we have never hired a sitter since moving to AZ but we are paranoid parents who haven't really dared to ask for help followed by directions for what to do if Brady turns blue.
We have met some amazing families on our journey with Brady, many of whom have extremely medically fragile children, some with limited life expectancy. This has brought me some needed perspective and has helped me adjust my expectations of what I thought my life was going to look like once I had children. I still have my bad days but will readily admit that the positives in our situation ALWAYS outweigh the negatives. I mean, have you seen this smile?
I feel better already. Thank you, internet, for helping me stay positive.