Sunday, August 24, 2008


Reagan has been a little turkey today. We waited to leave for Austin until she was good and ready for a nap around lunchtime. She slept for about an hour and then woke up a little fussy but OK. We made it to Austin and she was in a pretty good mood at first and then all of a sudden she turned it on and screamed and cried nonstop for hours. We thought it was probably tummy issues so we encouraged her to go potty, thinking maybe she'll feel better afterwards...didn't happen. She cried and cried some more and then finally fell asleep around 7pm. She was obviously overtired, her only nap all day was in the car on the way here. Poor thing. We were all a little miserable. Now I'm sitting on the phone calling every 24hr pharmacy I can find trying to locate some of her beneprotein (protein powder we have to add to her formula to get her diet to a 2:1 ratio). I tried to pick a can up at our local pharmacy on Saturday and they said that they didn't have any and if we wanted it they would have to order it (normally they have it in stock). Well we didn't have time for that so I figured I could just pick some up (or have it ordered) in Austin. I've called CVS and Walgreens and both say not only do they not have it, they can't even order it!!! I don't know what to do. I'm going to call one more place in the morning and if I can't locate it then I guess I'm going to have to call the dietician that oversees the ketogenic diet for suggestions on what to do! What a pain in the butt! I don't need this frustration. She has an 11am appt for the HBOT please keep her in your prayers. I'm a little nervous about it. Just starting something new. The high pressure can cause some sinus discomfort and your ears to pop, but there's really no way of knowing if it's bothering Reagan or not (since she's already prone to fussing). Please continue to pray for a decrease in seizures as well as good results from the HBOT!!

So sweet! She's always her sweetest when she's sleeping!


Kele said...

Reagan,I will be thinking of you and praying for you tomorrow!!

Forever Greatful to be a Wife and Mommie said...

I'm really interested to hear of your opinion on the HBOT, as I have thought of this for Gavin. I really hope you see some results!