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12/7/21

 This may be a short post, we are exhausted. Pax had a rough night last night. He woke up from a bad dream with a severe bloody nose and bad stomach pains. Since we are still uncertain of the cause of the stroke/brain bleed, the nose bleed was concerning. They did some labs and sent them off to hematology. We also had to take him down for belly X-rays in the night. His intestines aren’t moving as fast as we were hoping so his bowels were FULL of air. He had to do “gut rest” today so no feeds with NG tube or by mouth. We had to place an IV again to get fluids. He’s feeling much better tonight.

We had big progress in therapy today. He was able to stick his tongue out for the first time since this all started. We also got a little movement in his right leg during PT today.

We decorated his room for Christmas. His Uncle Kevin and Aunt Erin sent a package full of space gifts that arrived today. We used the space stickers to decorate his big paper tree and used them as ornaments for his little tree. 

Sounds like tomorrow we will start 2 PT sessions a day instead of 1. We are starting to get into a routine. The doctors, nurses, and therapists are amazing here. We will meet with the pediatric stroke team soon to decide when we can get more imaging to figure out why this happened.

Thanks for the continued love and support.

Janell

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