Adventures in Caregiving

I’ve been handling some more sensitive stuff recently for Caitlin, and it’s been extremely stressful. Even when you are in the right, the system is set up to save money, not to necessarily help people. Luckily, I have the support of RAMP for this headache. As most of you remember from Caitlin’s fundraising Grand Marshall gig a few weeks ago, RAMP is an advocacy agency for people with disabilities. They have been a lifesaver. It seems that I have finally stood my ground, and Caitlin will get what she needs to thrive. I just wish that people didn’t actively work against families like mine when we have so many normal difficulties to conquer each day.

Otherwise, Caitlin has been doing well. She is weaned off of Topamax and is on only one anti-epileptic for the first time since she was 3 months old. Unfortunately, it’s the expensive Vigabatrin that is approved everywhere else the world except the US. Everything seems to be working, though, with the current Vigabtrin/Ketogenic Diet/no-nap combination. During the summer, Caitlin was up to two strong spasms a day that lasted up to seven minutes each with the occasional blockbuster that went over 10 minutes until Diastat was administered. As of today, Caitlin has been seizure free since October 26. We’ll take it.

This has made her much more aware and with it. Caitlin had an awesome day at school doing very well with her vision therapy and physical therapy. She really is starting to stand for longer periods of time with minimal assistance. We’re so proud of her.

Things seem to also be going well with her and her little boyfriend. He and his mother have been arriving at school at the same time as us. The last two mornings he has insisted on holding her hand as I wheel her into class. This makes for a happy Caitlin. There is nothing quite like five-year-old love.

Last night I had my City of DeKalb Advisory Commission on Disabilities meeting. It went very well. We have finally started the process of networking with the similar committees at Northern Illinois University. It was great to share information and plant the seeds for future projects. The town/gown divide is ridiculous. This way we will combine our resources and ideas to hopefully make the community as a whole better for all of the people with disabilities. The only downside is that I think that I increased my workload again. Just call me Ado Annie....