The weekend has been a 50/50 crap shoot. Friday night Macey was able to take in a movie with several friends but unable to eat before or after. I think she did snack at the movie but no true meal. Saturday her stomach was upset with her and she spent more time in the bathroom. By Sunday she was very tired, still had an upset stomach and rested most of the day in bed.
We will be calling to have her see the ped tomorrow. We will need to exhaust all possibilities here before I am comfortable calling NIH and letting them know she is symptomatic again and losing weight. They have already said that she will need to come back in when that happens. New weight today was 97 but also a headache was new. She is also having pain throughout the day and not just with bathroom visits.
