Test Day!

Max got to drink his contrast by bottle so that we could be precise in our measurements. 
Max thought it was fun to pretend to be a baby and drink out of a bottle.

Max made it through a long day of tests. We were a little worried when we started off the day with many tears because he wasn't allowed to eat or drink and then we had a hard time getting his magic cream and tickle tape on him.  He ran through the house grabbing his port and yelling "don't take my blood" which I am sure was just a little anxiety over going to the hospital today and not understanding what was going to happen, but then the rest of the day went very smoothly.

We managed to get an MRI, CT Scan, and a spinal tap all done successfully.  He was under anesthesia for a lot longer than he is used to but he did very well this time (so far).  He got some good pain killers for the lumbar puncture which have made him in a particularly good mood. Overall he had to fast for almost 24 hours from all food and liquids so I bet tomorrow will be spent catching up on lost time.  I have had two specialists working on calling around to different doctors around the nation to find a lab that can analyze Max's Cerebral Spinal Fluid (CSF) for the last two weeks, as of this morning they were both still working on it, unfortunatly Children's doesn't have the lab equipment needed to run certain tests and doesn't have the specialists who are trained to read the results.  We are hoping that we can find both of these things soon before the CSF goes bad so that we don't have to redo this test or even worse travel to another state to redo this test. They were able to retrieve two different samples one of which got sent directly to the clinical trial that Max is a part of.  Stay tuned for the results from the other tests, hopefully this week. 



This was the view from our hospital room today. 
Do you think God could be any clearer?