A change of plans

Well after being on the phone with Mayo clinic most of this morning and afternoon, we have a plan of action at least for this week!
 Jaxon, my Mom, and I will be headed down to Rochester tomorrow sometime to be ready for appointments all day on Friday the 14th. His neurologist called this morning before her vacation, to see what has been happening, and had some ideas of what we are going to do next. She had the radiologist check Jax's MRI scans from January, and once again they were surprised that his inter-cranial pressure had been so high at the time of his spinal tap. She is concerned about a blood clot in one of the veins or vessels in his brain, and wants a different MRI done called and MRI with MV (not super sure what that means), from what I have read it shows more of the veins and the flow of blood (with a contrast) thru them. That way they can tell for sure if there is a clot anywhere. If there is a clot, I guess I am not certain of this, but would assume that he would be hospitalized, given medications, and monitored to see if this would help. If there isn't a clot (which would be the better case) we would still not have a reason for his high CSF pressure and need to come down and do some more searching and testing. I think we would be shooting for the last week in March, and that would include having him get his infusion (his monthly Actemera, for his Stills disease) down there, have a spinal tap after that, along with an EEG (to see how his brain is doing). Hopefully also get his neuro-psych test done as well! Then we will go from there...
But back to Friday, Jaxon will also have his adrenal testing done in the morning, then his MRI, then meet with his endocrinologist and rheumatologist. They will be able to look at his MRI scans and let us know how they turned out (since his neurologist won't be there), but if there is a clot I am sure there is another neurologist that will be able to help us out and know what to do next. At least we will be there, and getting one possibility answered!
We will be heading home after his last appointment because Jonah has his last 4th grade basketball tourney the next morning, and he DOES NOT want me to miss it! It is always really hard for Jonah when anybody leaves, he just doesn't like us going anywhere (which is understandable!), but hopefully this will be better because both Jeremy and Hayden will be here and we won't be gone but for a day (hopefully!!).
That is all for now, I will try and update as the day goes on Friday, but because it is so busy I might not get to it until Saturday :)
Thanks again for all the continued support, encouragement and prayers!!