Last weekend, Brandon decided to take a guy's trip to Florida to see the Cardinals play in spring training. Actually, it was a long weekend. Brandon left on Thursday (after being out of town Monday through Wednesday for work) and came back on Monday. Luckily, I have a very supportive sister who took me in for the weekend. Actually, her entire family took me in. They were all planning on going to their condo on the lake for the weekend and invited Sophie and me along. We had a wonderful time and it saved me from losing my mind. I look forward to the weekends more now than ever. The weekends are a time for me to get a real break from being a mom and all the responsibilities that come with it (especially being a mom to a child with special needs). When Brandon told me he was planning on taking this trip, I lost it. The thought of not having that much needed break was more than I could handle. My weeks are jam packed with doctor appointments, therapy appointments, researching new treatments, etc. Just to give you an idea of a typical week, here are our appointments this week: Monday - dentist, Tuesday - physical therapy, Wednesday - pediatric neurologist and EEG, Thursday - casting for foot orthotics, developmental therapy, follow up with ENT, fitting for ear plugs, fly to Chicago, Friday - fitting for new cranial molding helmet. I wish I could say that our weeks aren't usually this crazy, but they are. If it is not one thing than it is another. I keep thinking that things are going to slow down, but they don't. In two and half weeks, we will be leaving for John Hopkins to start the ketogenic diet. Hopefully, this will be it. Hopefully, the diet will be Sophie's "miracle drug" to stop the seizures. Hopefully, in a few years from now all of this will be a distant memory. In the meantime, thank goodness for family.
1 comment:
I bet you and Sophie get dizzy with that schedule!! It's good to hear that something has decreased her seizures. That's a blessing. Now I hope that her new diet will will really help squash them!!
Sounds like you had a nice time at the Lake. Glad the weather was good for you. I know it's nice to to get away and have a change of scenery. I'm keeping my fingers crossed that when you go down for a weekend in the spring of '08 instead of packing bags of medications you'll just have to pack a portable scale, mayonaise, cream, butter, sun screen and smiles!!
Hang in there. Be kind to each other. Be kind to yourself.
We love you.
Barb
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