Tomorrow at 2pm we meet with Addysons neurologist to go over her options in regards to combating these seizures. Hopefully he has an effective plan.
I was talking to a friend today. I told her I can deal with Bag changes, gi issues, fevers, clinical trials etc. nothing scares me more than seizures. Watching her do it and having no way to help her is so hard. Knowing that she could seize at anytime. She could hit her head. She could fall wrong. She could be with another family who doesn’t know what to do. It’s all the fears. Every time we fix something and we adjust to those fears- to the new normal, something else is thrown at us. When will it be enough. Why can’t she get a break. This just isn’t fair.
Beaming with hope 