Happy 4th of July to everybody. We're going to go to a parade in downtown LeMars this morning, then head to Saturday in the Park in Sioux City later today. Saturday in a Park is a big, outdoor annual music festival in Sioux City, and this year the headline band is the Counting Crows. They have some things for kids to do, so hopefully Grace will have fun. Then we'll finish the night by watching fireworks (hopefully Grace will still be up).
In the last post I mentioned that we were thinking about doing some things differently with Grace in terms of nutrition. Clinical trials are currently underway with SMA kids involving valproic acid and carnitine, and we're thinking about having Grace take these. The trials aren't finished yet, so there is no proof that they work or help strengthen kids with SMA, and there definitely are some potential side effects to the valproic acid. However, we talked to a number of families at the national FSMA conference a few weeks ago who had their child on it and reported pretty positive results. The main thing is we don't want to sit idly by when maybe there is something that can help Grace. We're still debating it, and it'll be a process of probably having to go to Iowa City to get her started. We'll see.
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