Day +671

All - I am writing to give a brief update on James' MRI as I know many of you have asked how things are going and if we had any results yet.  James was supposed to get this done Monday but it kept getting pushed back due to over-scheduling, etc.  James didn't sleep much last night (translation -> not at all) but fortunately it wasn't due to pain he was just restless.  His steroids are about 3x normal and he took a pretty solid nap in the late afternoon so I wasn't surprised.  I served as his waterboy all night and carried him to and from the bathroom about every hour or two.  King James at his best.  I give this context because I finally flagged our nurse down and asked if we could do his MRI at 4 am this morning.  We were both up anyways and I figured we could beat the crowd and get it over with.

James did amazing... he was a little confused at first when he was getting strapped to the board and put into the machine but got through the entire thing without crying, screaming, or even showing any remote signs of being afraid.  I was very impressed considering he just turned for and an MRI is a little daunting when you can't understand what they heck is going on around you as a little kid.  We got the results this afternoon and everything looks totally normal.  This was a huge relief for us as you can imagine.

We're still stuck here on fluids and some other IV meds but James has been on the up and up.  We're hoping for a great night tonight and a bit more sleep...  and possible discharge tomorrow.  If that doesn't happen, then likely Thursday (but my money is on tomorrow).  James will be moving to a new steroid once we are out of here and off his prednisolone which is also news to our ears.  We've been working towards this for 18 months.  Although he isn't off steroids, getting off prednisolone and onto a less potent one is a very positive step.  We're hoping to handles this with flying colors and we can eventually get him off steroids all together before the end of 2020 (gotta shoot high :-))

Thanks everyone for all the support and thoughts - and also for the great turnout thus far on sign up for the blood drive!  We really appreciate everyone taking the time to sign up to donate - it means a lot of us and I am sure it will to James one day when he is old enough to understand and appreciate all the support he's had throughout this journey.

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