Genetics Appointment

We spent 1.5 hours with Dr. Viskochil during T's appointment today. In some moments, today felt like deja vu from 5 years ago. Fortunately this time was not a total shock to the system. Thinking I'll move his yearly genetics appointments out of December from here on out though.

Short version...Travis will have a MRI on December 16th of his cervical, thoracic, and lumbar spine. His previous 18 MRIs have been pelvic and lower extremity (the next one of those will be in early Feb) and twice included the brain.

Longer version...last year Travis started commenting about his back, shoulders hurting and he wanted me to rub them. The only other places Travis has me rub are areas where there are known tumors, the lower back and left leg. We talked with the seating guys at Shriners and they gave Travis a seat cushion to use at school. Dr. Viskochil examined that area on Travis during one of the routine rapamycin exams, nothing stood out to him. Over the past year, Travis asked for me to rub that area on his shoulder/back, sometimes more than his lower back.

Today, Dr. Viskochil performed some neurological tests on Travis' upper extremities and noted that T's left side is generally weaker than the right side (we knew that about his legs already). The muscle in T's left arm is not as "defined" as Travis right arm. Both the upper and lower arms on the left side are smaller in circumference than the right arms. While examining the lower part of Travis' neck, Dr. V noted a fullness on the right side when compared to the left, he showed me the area and I could feel it also. If you've seen Travis, you may have noticed that he tilts his head to the left, we haven't figured out why to this date.

These findings combined with a few others during the neurological testing warranted an entire spine MRI for Travis. Due the long nature of these scans and his routine scans, we would want to separate the scans into 2 appointments for this time.

We discussed the pelvic MRIs and talked about some of the reflex cross-over that is sometime observed during exams by Dr. Viskochil and the docs at the NIH. The computers worked great today and Dr. V could view the images from the prior MRI to check for tumor on the right side of the spine. No tumor areas could be identified to the right of the lower spine, but another view of that area was not included on the computer. Upon examining the spine in the MRI images, it was noticed that the vertebra on the left side where the tumor is located is showing signs of scalloping (curving in, concave). This could be tumor eroding the bone or something different. There is another area where ti looks like there may be some compression of the space between the vertebrae on the left side. This will be addressed more at Thursday's orthopedic appointment at Shriners.

Other items discussed during today's exam...Travis had a great ophthalmology exam in August with Dr. Hoffman, yet he failed the school vision screening and did a little better on the re-screen. Looking through the 2 prior brain MRIs, nothing jumped out to Dr Viskochil to warrant a brain MRI. T's optic nerves had no change in August from T's prior exam. That's good we looked through those.

We discussed the MEK trial at the University of Utah (Travis is too young to enroll) and we talked about the Peg-interferon trial through the NIH. We're not expecting to see anything big with Travis' case in regards to shrinkage, but we are thankful the growth apparently is slowing down.

Travis' leg length discrepancy measured ~8.5cm today at the check-in, better numbers to come with Thursday's appointment. Dr. Viskochil was pleased to hear that Travis is doing great in school in regards to behavior. T's report card came home on Monday and there were no bad surprises, we know he has difficulty in writing/handwriting. The only surprise was good, he was doing better in math than what we expected. The note from T's teacher was wonderful.

If the 1.5 hours with Dr. Viskochil and 2.5 hours in clinic wasn't enough today, Travis saw his pediatrician today for a sinus infection. Praying this kid catches a good break soon. Thank you for the love, support, prayers, encouragement, thoughts.