6/11/16

Today has been a pretty good day for Cole. We are officially back on the HEMOC floor and settled in our new room. The PICC line has worked well so far and has eliminated some of the pain from the constant pokes and IV meds he was getting. He is not hooked up to IV fluid so we are trying to drink and eat as much as we can to avoid that. Need some tummy movement as he doesn't want to eat while his tummy hurts. He also isn't hooked up to any monitors today so he can move freely around the room which we need lots of movement to help his muscles and especially lungs.

The MRI didn't show anything concerning so far and appeared to be what the main HEMOC doctor expected so that's positive. For the first time in weeks we have been fever free for 24 hours, yay!  We anticipate that changing but we'll take no fevers as long as we can as it makes him feel bad and grumpy which isn't fun for any of us. :-)

Since he is moving around well today we hope to be able to go outside for a break later if he's feeling up to it. He is now on scheduled pain medicine so that is helping motivate him to move around more as well.

We will continue our weekend of "waiting" and hope some of the various test results start to roll in sometime next week.  We don't know what each day will bring, but we'll take the good day we've had so far today and hope it continues throughout the evening.

As always, thank you for the continued thoughts and prayers for our amazingly strong guy