None of us had the best night's sleep last night. Reagan flailed around whacking Mike in the head continuously and Ryan squirmed around a lot like he normally does. Thankfully our drive today was not nearly as long as yesterday. On a bad note, Reagan was on the verge of tears as we left the hotel and needed pain medication the entire trip. On a good note, she was able to sleep comfortably most of the drive. It was a long drive through mostly desert, but some mountains and we all just took in scenery. We got to Anaheim and checked into the Disney's Grand Californian Hotel around 4:30pm. My mom had already flown in and was waiting for us when we arrived. Also our friends from CA who were meeting us at Disneyland were there in the lobby waiting for us as well. Heather and I have been friends for over 10yrs, meeting each other through our blogs so many years ago when both of our girls were diagnosed with infantile spasms. We've spoken on the phone, texted, emailed, etc...for all of these years but never met in person. Until today. She and Zoey, her precious daughter, were both there and it was so amazing to finally meet them after all of these years! Reagan rested in the room with Grandma while Mike, Ryan, and I joined them for dinner and a stroll through downtown Disney. Ryan LOVED the Lego store! We were all exhausted but it was so nice to get to hang out with them for a bit before our day at the park the next day. Grandma and Reagan were both dozing by the time we got back...Ryan and Mike were out shortly thereafter. As I was finishing off medicines and making Reagan's formula, I could hear the fireworks going off outside. I looked but couldn't see them from our window (I didn't worry about seeing them tonight because we figured we could see them tomorrow or the next day, which we later found out wasn't going to happen, apparently the fireworks are only on the weekends now...very disappointing). Again, I was in bed by 10pm. This seriously never happens! We all went to bed just hoping and praying that Monday would be a better day for our sweet girl. We really want her to be able to enjoy Disneyland!
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!