I don't know who had a better day, me or Alex. Alex's day was super busy and I got quite a break! Alex started the morning with OT once again. Alex really enjoys working with the OT here. They spent an hour together playing ball, doing legos, and coloring. He even gave Alex a homework assignment to complete by tomorrow. While Alex was in OT I got to spend girl time with my good friend Joy and her sister and daughter. They were in town from Dallas for an appt. After OT, Stacy came to do some more decorating of the room. They painted for a while. As they were cleaning up, a volunteer came in wanting to play with Alex. They headed off to the playroom and I did some laundry. Before they had even come back to the room, Dr. Koenig and Lakeesha joined the fun in the playroom. They were just leaving when Christine (the music therapist) came to do music. While they did music I got to go have lunch with Joy and Missy! Alex was laying down to finally take a nap when PT came in to stretch him and take him for a walk. They came back a little later to ask me if I wanted to help work on a 500 piece puzzle in the playroom. While I helped complete the puzzle, Alex played with one of his favorite volunteers. We did get in some quiet time this evening before ending the night with a puppet show. Bug is finally getting settled in.
Medically we are kind of in a holding pattern. Alex is doing well. We dropped one of the antibiotics today and are down to just two. We are just watching him for the next week. Assuming we have no more hiccups the plan is to go to surgery next Wednesday for a new port, an MRI of his spine, an SSEP and any tests that GI feels are necessary. Alex's ultrasound yesterday showed an enlarged liver. Today we discussed with GI his pancreas numbers and his liver enlargement. Our GI comes on service on Monday. At that time depending on his labs, we will determine if a closer look at either the liver or pancreas is necessary. The hope is that we can head home next weekend.
I am so thankful for the continued love and prayers we feel surrounding us.
Ali
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