Tuesday, June 23, 2009
Reagan was up a lot again last night, but she has been in a much better mood today so it's made my life a lot easier. I've been playing catch up all day. I was able to schedule her upper GI with small bowel follow through for next Tuesday, bright and early at 7am. She's had one of these before when she was first diagnosed with seizures at 5mo and everything looked OK (although it did show reflux), but with all of the tummy problems she's been having lately her doctor thought it might be a good idea to check it out again. It will look at the basic architecture of the stomach/intestines just to make sure everything looks structurally sound. Over time things can change, so this is something we need to rule out (again). I still need to schedule Reagan's cataract surgery, but I haven't been able to get through to the surgery scheduler today. I'll try again tomorrow. I'm also trying to get the seating company we bought Reagan's Squiggles chair from to bring out some special needs strollers for us to try. The Squiggles chair is perfect to use around the house for therapies, but it's just too bulky (and doesn't have a sunshade) to use when we're out and about. I'm leaning toward something very simple and light, like an umbrella stroller. The two I really want to see are the Special Tomato Buggy Stroller (with liners) and the Maclaren Major. What's irritating is that we already have funding for this equipment but we've been waiting over 2 months now for them to get us a demo. I want to see it first to make sure it's actually going to work for Reagan. She is so difficult to manage now with her always wanting to go into extension (making her stiff as a board), it's almost impossible to hold her and she extends herself all the way out of our regular stroller. Hopefully we'll find something that is light enough for me and supportive enough for her so we can get out and do more. Right now we're pretty much hermits, never leaving the house except for doctors and therapy appts. Seizures seemed a little improved from yesterday, but then she woke from an afternoon nap and had a bunch that really knocked her for a loop. Poor thing. Still no word from her neurologist. So frustrating, it seems we can never get a hold of this guy lately! I'm hoping we'll get the Clobazam in this week so we can start it before the weekend. Please continue to keep her in your prayers.