NIH Trip and School Update

I realized that I forgot to update T's blog after his appointment at the NIH a few weeks ago. Travis enjoyed his time with his medical "friends" in Bethesda, especially teasing nurse Kim. We spend more time in the air traveling to the NIH than during his actual appointments, not a bad thing for this trip.

The last post left off with a missing Sochi, his stuffed animal cat. Great news, Sochi stayed behind on the NIH shuttle from the airport and Monday morning brought a happy reunion of Travis and Sochi.

Sweet reunion

We spent some fun time in the playroom at the NIH before heading into the Peds clinic for T's lab work and appointments...and great racing games in the waiting room for between appointments. Each visit includes an exam to see how T looks, he looked great! Dr. Widemann, Andrea, and Anne were all pleasantly surprised on how well T's scar from surgery is healing.

Andrea and Travis having a blast during the exam (notice Sochi)

Good news from the volumetric analysis, Travis' tumor remains stable when compared to the numbers in February. The plate causes shadows on the MRI, so from now on, T's volumetric analysis will include only the pelvis area. This will not remove T from the Peg-interferon trial, nor exclude him from future clinical trials. All looks great and with no major side effects, Travis continues on Peg-interferon. His dose will slightly increase from 0.22 to 0.23 due to Travis' growth, not unexpected.

Travis and I decided to go see the National Zoo on Monday afternoon, the weather was beautiful. We boarded the red line and made our way to the zoo. We enjoyed seeing the giant pandas in person, really a cool experience. We arrived back at the Children's Inn in time for a wonderful catered dinner from On the Border. Mmmmm....

Giant Panda!

Car fun at the Children's Inn

We spent time playing inside and outside on the fun playground. Travis seems to know where the cars are located in any given room, even if he's never been there before. ;)

Tuesday brought another fun adventure as my friend Diana and her daughter Savanna picked us up and we went around Bethesda and Baltimore before Travis and I flew back to Salt Lake City. We stopped in Bethesda to pay tribute to a friend's sister-in-law and while there we noticed the Georgetown Cupcakes store. Yes, we got cupcakes...yes, they were delicious! We headed to Baltimore's Inner Harbor area, really a neat place passing by the Orioles and Raven's stadiums. All of us enjoyed our time together and we appreciate Diana and Savanna spending their day with us on Tuesday (and picking us up from the NIH). Thanks!!!

Savanna and Travis

Georgetown/DC cupcakes!

Travis returned to school on Wednesday just in time for parent-teacher-student conferences. No surprises at this conference and we set educational goals (separate from IEP goals) for Travis, all students have educational goals set at these meetings. Earlier this school year, the speech person evaluated Travis and she felt Travis' speech was delayed in a few areas that qualify him for speech services. Today we added speech goals to Travis' IEP, mainly pronunciation with the "l" and "th" sounds. Not surprising.

Miracle League baseball wrapped up earlier this month, another fun season in the books. Travis now uses only his walker at school, we're so glad he is doing wonderfully now in his femur fracture recovery. He doesn't let much get him down. Thank you for your patience waiting for this updated and all your continued prayers and thoughts.