Madi’s Day 3 went better then expected, but her night was not so great. They suspect that her days and nights have flipped and she is not able to sleep during the night. She is not responding to melatonin and the Valium she has to take for her muscle spasms is acting as a stimulant instead of a sedative. Her swelling is still hanging around and her blood work came back clear, so no known reason for the swelling.
She headed into her day 4 with only 1 hour sleep in two days. Considering she was so sleep deprived she handled her double Physio like a champ. They tried all kinds of different positions and guided her through play.
Madison is extremely weak. She is able to do things right now equivalent to when she was just under 1 year of age. We know this will improve daily, but it is still hard to see. Most movement causes her pain and the tears make her eye swelling increase. She is a warrior and powers through. Needless to say we are looking forward to being back at the hotel.