Our So-Called Life.

So, I know I haven't even been able to find the time to blog about our recent trip to Florida to see Dr. Miller and we are already going back. Whew. OK, as most of you already know Cade's visit was very, very positive. Dr. Miller was just thrilled at Cade's progress and had nothing negative to say. It was an amazing visit with happy tears shared from both of us(Yes, Dr. Miller shared some tears as well). Very, very moving I tell ya. To see this very professional, educated, amazing doctor get teary over MY kid...the best feeling ever!   THEN, as we are checking out she calls us back to her office. She said something like, Hey I know we just had the best visit ever, but his sleep study was just read and shows severe obstructive apnea..tonsils and adenoids need to come out ASAP.   Um, Whaaat???   So, that was our only flaw this visit. Horrible sleep study with desats down to the 80s...So not good! Our last study was great, but it has been a little over a...

My Oh so lovely fellow PWS mom, Ali Shenk posted this very powerful video that I wanted to share.   What would you tell yourself on the day you received your child's diagnosis?    I remember that day so well. It was a phone call I had been anticipating for over a week as we patiently(yeah right) waited for the results. Cade's NICU doctor called and asked if Jake was home...he said to put him on speaker phone so he could tell both of us the results. I didn't though, I wasn't ready for Jake to hear it. I felt as though I knew the results already. I had done so much research, I was ready to accept it. For Jake things weren't that easy. This video hits home. What a difference 2 years has made.   If I could go back to that day, I would reflect on all these messages whole heartedly. The future was such a scary thought...and still is at times. That is besides the point. I have learned to live for today and cherish all of the unconditional love th...