Well, when the doctors were trying to put little humpty dumpty back together again they seem to have forgotten t to insert his "off" button! Isaac is doing much better. He is in a great mood and besides some occasional intestinal discomfort, he is pain free. We are still tweaking the doses of medications. One issue he is having is that he has not appeared even the slightest bit tired despite on medications that could really potentially knock him out. We are trying a little something at night but he only slept from 3am-8am yesterday and no naps during the day! But, he wasn't even the slightest bit tired. Obviously that will catch up with him soon if we don't get that figured out. We are working toward discharge in the next few days.
Despite time stopping while we are at the hospital, life certainly has a way of life piling out on the outside world. With a lot of catch up to do at home, we are in need of an extra dose of energy for the next weeks.
Maisy saw her neurosurgeon yesterday and we are ready to schedule her craniosynostosis surgery soon. This the surgery we have been waiting for--a restructuring of her skull that will allow her brain to grow again. It has not been able to grow and that has serious implications. They are going to repair her very large fontanelle in the back of her at the same time. That is good news because initially they told us that they were not able to do that at the same time. With her extreme energy level and dare devil attitude, we will be more than thrilled to have that soft spot repaired...it causes us anxiety although she isn't worried about it in the slightest!