Tuesday, August 19, 2008
Reagan was up again last night. Wide awake at 3:45am and having lots of seizures. Despite everything she was super happy and talkative. I stayed up with her until 5am and finally gave up on her going to back sleep and just laid her down in her swing awake. I guess she went back to sleep but when she woke up at 8am she woke screaming! More tummy pain. She cried nonstop until she finally fell back asleep. Poor thing. She was hurting and held her breath again until she turned completely blue! I hate it when she does that...because she also stiffens out like a board...it's pretty scary. Luckily she woke up in a much better mood. I spoke with Reagan's pediatrician today about getting into Shriners and she said that we need to reapply when she's two. She had talked with the admitting physician and they said that because she's not walking right now, Shriners cannot provide her any more services than she's already getting and that she's better off with her current orthopedist. Ugg. Not at all what I wanted to hear. Of course there is no guarantee that she will be walking by two, but they are more likely to accept her at that time regardless. I don't know. I'm just so sick of getting the shaft by all of these organizations. I can't tell you how much time I spend each and every day on the phone and on the internet trying to get the equipment/services that Reagan needs...that she deserves! Why do they make all of this so difficult?!?!?! It's just so frustrating! She has an ophthalmologist appt tomorrow morning to check on the state of the cataract in her left eye and possibly schedule an exam under anesthesia/surgery. I plan on asking the doctor's opinion on HBOT because I have read that it may accelerate the maturation of cataracts (although I'm not sure how much she'll even know about it to begin with). Please continue to keep Reagan in your prayers as she is still struggling with these darn seizures and due for another increase in her medication.