Friday, May 9, 2014

Month 3 of Maintenance

Ev has just finished his third month of maintenance. It has gone smoothly and no backlash from the small risks we are slowly starting to take. And, we got to the bottom of "wrinkly eyes."

Awhile back I posted about how Ev will get wrinkly eyes when he is sedated for a spinal tap. Well, he doesn't like spinals (who does) and getting wrinkly eyes freaked him out. So, after talking to one of the nurses we determined that the doc sedating him needs to balance the meds differently. Either balance the med or sedate him quickly.

This past visit he was sedated quick and it freaked me out. I wasn't ready for him to go limp in my arms in 5 seconds. My heart dropped, but I can see the vitals just like the two docs and two nurses in the room with us. So, all was well, but what the hell?! It's unnerving to hold your child while they are being sedated anyway and I just didn't know going quick was an option. Ev said he had no wrinkly eyes this time, so that was great and now we have a better idea of how to keep "wrinkly eyes" away for good.

Ev continues to relax more and more. He knows now that he doesn't have to be anxious or fearful the whole time and that even though the nurses might cause him pain or discomfort that they are caring people. He'll ask me what the nurses are there for and then act accordingly.

The summer promises to be a good one...we have plans underway with Make A Wish (http://wish.org/) and Ev has done a 180 from where he was almost a year ago.


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