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A different Santa experience (post.4)

Updated: Jan 21, 2019

After Coopers MRI we immediately moved into Children's hospital and quickly learned the path we would be climbing as our new world unveiled itself. Our 6 year old's brain surgery was scheduled on December 13th-how do you compute this? Moving through the next 4 days was beyond torture- some moments I was able to throw myself into a game of UNO and other moments I was not able to breath.


The morning of December 13th could not come soon enough, December 12 night was a very restless one as we saw first hand the clear need for the surgery. December 13th our family gathered around to share in the waiting for our sweet little boys 10 hour brain surgery. The term "it is all relative" had new meaning for us each step brought us an unwelcome sense of spontaneity. With everything we learned we found ourselves on a never ending roller coaster of emotion.

The next few days we were presented with a 6 year old that had a full gross resection of a tumor, but now may have some side effects from the surgery. As a few ICU days/nights past we learned this would be our next hurdle was Posterior Fossa Syndrome.

Hurdle doesn't even do it justice-it really was the next Mt Everest without oxygen.

Our son was basically paralyzed with no ability to walk, talk, swallow. Spaulding Rehab would become our next transition to hopefully regain his these abilities back all the while being transferred by ambulance daily for his proton radiation protocol.


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