Monday, May 5, 2014

Stable MRI!

Josiah had a great scan day. It's always a special day to him when Stephen takes him to St Jude instead of me :). He went to sleep and woke up without a problem! The last few scans have included vomiting and some slight seizure activity so they premedicated, and it did the trick. He was even awake enough to power through thirty minutes of his OT appointment.

So overall, his scan is stable. There was some thickening at his surgery site from December but they suspect that is part of the healing process. Time will tell if the brightness in his tumor is truly growth. It took over a year for them to notice it was changing at all. It could very well be another year before they can confirm it is growth and begin treatment.

It is an understatement to say we are thankful to be dealing with only seizures and not his tumor right now. Dr. B encouraged us that not finding an anatomical reason for Josiah's seizures is a good thing. I know that is true, but I confess I am very frustrated. I feel like we're beginning to go in circles trying to treat these uncontrollable seizures. Treating something you don't know the cause of seems counterproductive. But I have yet to meet someone with a seizure disorder who actually knows the cause of the disorder.

We meet with neurology tomorrow afternoon. Please pray we can agree upon a plan that will take this seizure activity down a notch (or 5) without causing him to be a zombie. He's been very tired and uncoordinated since his last med increase a week ago.

Thank you for the texts and emails and prayers today.
Please pray we all sleep through the night. We have lost a lot over the last couple nights.

2 comments:

  1. Good selection of the topic, really appreciate it

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  2. Brooke LukasiewiczMay 13, 2014 at 10:40 PM

    Praise God! Will pray for relief from seizures. Saw his picture on st jude website such a cutie! Love and miss you Merri!

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