Life as a Leach

You've probably already read a bit about Reagan .  Remember, she's the mom of one of only a handful of kids who are currently living with CCMS?  I love that when you search for CCMS, her blog pops right up on top!  What a great way to get the word out about this crazy syndrome! Anywho, Reagan's doing an interview with another woman about their life with a special needs child.  Hop on over to this blog to read Reagan's truthful answers to some difficult questions.  I can relate to so much of what she says!  Our circumstances will most likely be different once Abby is home, but our hopes and dreams for our daughters are very much the same.

Our meeting went pretty well today. We discussed a lot of information and there are still a lot of unknowns about Abby's condition. There is much more genetic testing to be done...not that it will necessarily change Abby's care, but knowing exactly what she has may help them to treat certain aspects of her syndromes in the future. However, we are encouraged by the doctors' attitude toward Abby's future and we believe that she will have lots of time to really change the world!! :) They believe that she is beating the odds, and so do we. Abby doesn't know the statistics, and we're not going to be the ones to tell her! We also discussed Abby's future surgeries and the need for an excellent orthopedic surgeon. Thankfully, there is a world-renowned spinal specialist at Hopkins that UMMC is highly recommending! I'm so thankful that we live within driving distance to so many wonderful hospitals! We were told today that by choosing the trach for Abb