Summer 2015 Update

Travis enjoying the slides at Camp K
(where he will go to NF Camp starting when he's 12)

They say time flies when you're having fun...well, we've been having lots of fun. :)  I look up and the kids return to school in a little more than a week. Travis recovered from his correction surgery fairly quick and continues to make progress each week. He may even surpass where he was before the femur fracture in March (see blog post here), that is good news.

As in previous years, the bicyclists from the Journey of Hope North Route passed through Salt Lake City. Nolan and Barrett were out of town that weekend, so Travis enjoyed playing with ~35 older "brothers". The Davis family joined in for the friendship visit and many laps were cycled racing and chasing the bad guys.

Travis bicycling with a few gentlemen from the Journey of Hope North Route

Travis saw Dr. Viskochil on Jun 23rd for T's semiannual genetics appointment. Travis looked good upon examination with little indication of the upper body weakness observed at the Dec '14 appointment. Dr. Viskochil noticed some subcutaneous neurofibromas (just under the skin) in Travis' abdomen and back. The previous MRIs showed these neurofibromas; nothing new, just visible. Dr. Viskochil also examined the results of the correction (femur reduction) from the Mar femur fracture and change in T's thigh size. (The volumetric MRI results from May indicated a stabilizing of the tumor in the area they perform the analysis.) Travis returns to see Dr. Viskochil in 6 months, hopefully we will know more about T's potential enrollment in the MEK inhibitor clinical trial then.

Travis and Dr V, reflex checking

T helping during his exam

Travis turned 8 in July and loved having Scott and Nolan at home this year to celebrate. Travis saw his pediatrician that morning for his 8 year exam (not sure what I was thinking when I scheduled that appointment). The nurse asked him what he wanted for his birthday, Travis replied, "Everything that I get." Pretty profound for an 8 year old. (Travis saw a geneticist when he was 1.5 years old who told us that "He may not make it to 8, he may make it to 80, or he may not wake up tomorrow." He never saw her again.)

8th Birthday!

Shortly before Travis' 8th birthday, Jason Hart of Jason Hart Racing contacted me since he wanted to send T a birthday present. (You may remember Jason from 2013 Daytona, 2014 Daytona, 2014 Utah). Jason clearly marked on the box for Travis to open the present on T's birthday and Jason's wife asked us to video T opening the box. Of course we were curious and could hardly wait to see what was inside. Listen for T's comment at the end...I love the "yet".

Travis and the racing suit, letter, and stickers from Jason Hart at Jason Hart Racing

Travis spent much of the summer balancing fun, reading intervention, physical therapy, math homework, appointments, zoo trips, donuts, and of course watching and playing racing. :)  Travis works hard in PT and we know when he leaves his comfort zone in regards to mobility...sometimes I think the whole floor knows. In mid-July Travis did a gait analysis at Shriners Hospitals for Children to see how he walks and obtain a baseline to see how things will change with the correction. The annual ophthalmology exam continued the streak of great eye and optic nerve news.

Travis trying to negotiate with Mr Mark during PT

T during the gait analysis at Shriners

Watching racing in bed, what could be better if you can't be at the racetrack?

Donut time with brothers, just because we wanted donuts for breakfast (no pokes)

Helping make snack during VBS

T putting his new stuffed animal in the "MRI machine"
at Shriners Hospitals first Walk for Love

Playing with the river otter at Utah's Hogle Zoo

Rocking his annual ophthalmology exam

Swimming lessons 

Fun at Off Broadway Theatre thanks to Hope in Utah

Thank you for all the prayers and well wishes this year for Travis and our family. Stay tuned...more exciting times ahead...and we're not talking about school starting on Aug 24th.