Travis' Doctor Appointments on Friday

Ahh...it's good to be home, and get everyone up to speed from Friday's appointments.  We had a safe drive back and only saw a little snow in the air and little on the summit by Laramie.  It took just under 7 hours to get back home on Friday night.  Thank you God for another safe trip.

Friday morning was full of appointments, but generally good news from all.  Travis saw Mike Pond at Shriners first and he was very encouraged on how Travis looks and is doing.  He examined Travis and determined that things looked so good that he would hold off on x-rays until our next appointment.  :)  That is huge!  We always want to minimize our radiation exposure, especially for NF patients.  Mike Pond commented that it looks like T's leg length discrepancy may have even slightly improved.  Great news!  He wanted to see T again in a few months and we made T's appointment for the clinic at the beginning of July.  It was great to be able to make an appointment and not have to coordinate an appointment with a clinical trial exam.  We appreciate Mike Pond seeing Travis on non-clinic dates so he can be seen while we are in town for exams and MRIs dictated by the clinical trial.  Shriners is amazing!

We were out of Shriners in less than an hour and we headed over for Travis' end of course 6 clinical trial exam.  We had a few minutes to hang out, so Travis enjoyed showing Nancy the trains, where he goes for MRIs, the lab (happy since NO poke on Friday), cafeteria, etc.

When the nurse was doing the check-in assessment, T was more than done with being at a doctor's office.  He settled down after we got into the room and was more his usual self, his sleep pattern was thrown off by the MRI and that played a big role.  Dr. Viskochil did his exam and overall Travis looks good.  He gave us a copy of the preliminary MRI report from the local radiologist (again the volumetric analysis is the better description of the plexiform's behavior) and that report showed the plexiform as STABLE.  :)  While it's not the final answer, it is an indicator that the drug trial may be continuing to help T and his plexiform.  T's lab work came back good and his triglycerides even came down this time considering the recent dose increases.

One item Dr. V wants to investigate further is why Travis tilts his head to the left while he's sitting.  He's not sure if there is anything happening with T's vestibular (balance) system and will investigate further.  Most people cock their head when they are listening intently, but that seems to be the how T holds his head.  It simply could be a habit formed from all the ear infections T had as a kid, mainly with the left ear.  Other possibilities could be a structural issue on that side or a tumor affecting the auditory system.  Tumors affecting hearing are mainly associated with NF-2 (Travis has NF-1).  Dr. Viskochil may have Travis see a neurologist when we move to Salt Lake City and may even have a brain MRI done specifically looking at the vestibular system when we are in for the next MRI.  We're not sure, but something we're working on.

I received an email from the research coordinator while we were driving back on Friday and T's rapamycin level was IN the target range!  Yes!  (We got the results early since he had blood work done on Thurs and they could overnight it that night.)  This means he'll have a repeat blood draw this Friday and hopefully we'll get the 2 consecutive weeks in range.  :)

All in all, very good appointments on Friday and a smooth drive home.  We jumped right back into our usual routine, so this morning I had a chance to catch up on the blog.  Thank you for your support and prayers.