So she also has a tube now for urine. :( We met w/ a nice Episcopalian minister, Renee today. I don't remember what all exchanges we had, but it was an awesome feeling. Looking forward to the "prayer circle" I believe it is called. It is a circle of around 200 people in the city praying for the children on this list that I can go add her to. Random people. praying for her - how neat.
Yup this was not my plan. However it was nice to only have to be bawling while I repack into the smaller bag last night rather than have to go home and figure out what to pack.... We were already packed, had reading material and snacks. We were brought to SUNY State Univ. of NY Upstate Medical University which my Indiana friend informed me that she knows a child brought here to Syracuse after not getting answers at Riley. Apparently Syracuse hospital is known for genetics, epilepsy... Curious to see what a second, third, etc. set of eyes see.