Emerson's Scoliosis Journey

I missed National Rare Disease Day, but here is an excellent blog post from Nora's mom. Nora's Journey Rare Disease Day When we first received a diagnosis for Emerson, I came across this blog about Nora and contacted her through Facebook, which lead to joining two Facebook "support groups."  I am so grateful for her and both of these groups for being there when we felt all alone, needed advice, or need support.  Many times she writes things that I feel like I was thinking but couldn't put it into the right words.

Our casting day was quite long!  Our appointment was at 2 and they were running 2.5 hours behind.  Even though Emerson hadn't had anything to eat since the night before she did amazing!  She is such a trooper!  Since we had been rescheduled after the asthma attack and hospital stay, we weren't able to get on our doctor's schedule fast enough, so another doctor applied this cast.  They were able to use the mask for her anesthesia instead of an iv, which was a huge plus.  She even went to the nurses so they could take her back to the operating room without crying (those of you that know Em, know that she is pretty attached to Mom and Dad). The x-ray from our last appointment had shown that the degree was over 80 and the cast improved it to 68.  Considering the last cast had moved it to 50, that isn't a huge improvement, but it is definitely movement in the right direction and will hopefully give her lungs a break so we can stay out of the hospital. ...