2 Weeks In

No child should have to be that brave, much less an adult. Today marked Travis' return to routine blood draws, he's been on the Rapamycin for 2 weeks. The check today was his overall blood counts and triglycerides, no drug level yet. As the phlebotomist (at a Children's Hospital) gently "dug" the needle around in T's arm this morning looking for the vein, my heart broke for T. Travis was super brave, holding still and saying "Ow, ow. Ow" as needed. Many of us can recall how hard it can be to get a "poke" on the first try with T. It's not any person in particular, his veins move around even though he's still making it a hard stick.

No sooner was the needle out and T was ready to pick his prize and go get his donut.  :)  Today he picked chocolate donut with chocolate frosting and rainbow sprinkles, each time he pics something different. I think we were both a little bummed they didn't have any "U" donuts at the cafeteria this morning.

Travis continues to tolerate the Rapamycin pretty good, he doesn't care for the taste this time around. We could consider that a positive since T drinks plenty of water to get the medicine taste out of his mouth. Hopefully (knock on wood), this will keep the mouth sores away.

Next month Travis sees the Orthopedic Surgeon in Salt Lake City, Dr. Lor Randall, that would do plexiform debulking (partial removal) surgery IF needed at some point in time. This is a huge IF considering all the risks associated with that type of surgery. Dr. Randall isn't part of T's orthopedic team at Shriners, but they do communicate with each other. The plan is for Dr. Randall to do yearly follow-ups on Travis to establish a relationship with T and us. The yearly part enables familiarity and the opportunity to see changes over a longer time frame.

T also has his 6 month follow-up appointment at Shriners regarding his wheelchair next month. This is a routine appointment where any needed adjustments would be made. Travis sees his developmental optometrist tomorrow and his opthamologist in August, it's nice to have a set of eyes looking specifically at his eyes every 6 months. We appreciate the services that each specialist brings to the table, Barrett made great strides in his vision while going through the vision therapy program with the developmental optometrist.

Next appoinment with Dr. Viskochil is 2 weeks from this morning and will mark the end of the 1st course of Rapamycin. We're all pulling (and praying) for a quick appointment and things continue to look good. Thank you for all the prayers, support, and encouragement as we go through this together again.