Reagan slept well again last night...and so did her brother!!! FINALLY! He only woke up once around 3:30am and I found him standing up in his bed talking to himself. He went back to sleep and didn't wake up until after 7! I'm still in shock! Reagan even slept in this morning til 8:30am! We could tell right away that she was a bit off this morning. She had the laughs and just seemed a little more on edge. As we were getting her ready to leave to go to get her gj-tube changed out, she escalated a bit, making me nervous for our trip. Thankfully her brother fell asleep and was quiet our entire drive in, so we didn't have to worry about him aggravating her. She was great for her tube change (as always) and we were in and out in a flash! Our appt was at 11am and we were in our car driving out of the med center by 11:45am! (Note to those who have their tube changes done at the other hospital that requires anesthesia for such a simple procedure!) As the afternoon went on, Reagan's sensitivity increased. She had a big poopy diaper and seemed a little more agitated after that and then her brother started up crying and that was IT! She started crying and we had a big mess on our hands. Ever since then, she's been completely on edge and on the verge of tears at all times. I tried both Ibuprofen and Lortab...nothing. I'm hoping clonidine will do the trick and help her sleep tonight, otherwise we're in for a LONG one. Please keep our girl in your prayers tonight! She needs a break from all of this...one day is NOT enough!
On our way home from the hospital...notice Ryan's hand latched on to Reagan's toy!
On August 21, 2007 (at exactly 5 months old), Reagan had her first cluster of seizures. She was diagnosed at 6 months old with Infantile Spasms and 2 years later with Mitochondrial Disease. Life has been a roller coaster for us and our baby girl but we've been blessed with wonderful friends and family to help us though this!