Wow...a month since Travis was removed from the drug trial and was hospitalized for pneumonia. Time has flown by. Travis will now be followed by his geneticist at appointments in the NF Clinic and not research appointments. Since we switched Travis' medical care to Salt Lake City in Oct '10, T's exams with Dr. Viskochil have been research trial appointments. Travis' next appointment with Dr. Viskochil is Thursday, April 19th at their Riverton clinic. He's also on the wait list if anyone cancels, I'm not sure if people do though. For reference, IF Travis was still on the drug trial, he would have seen Dr. Viskochil on March 30th. No other answers at this time regarding how often he'll be seen by the geneticist and the frequency of MRIs. Best guess is that we'll figure these things out at T's appointment in April.
Travis' Physical Therapist noticed during T's appointment on Feb 6th that T is not able to completely straighten out his left leg (again). The again part...this happened ~3 years ago shortly after we discovered T's leg length discrepancy. Within 2 weeks of discovering the discrepancy then, a similar thing happened (knee not straightening completely) which caused T's Cheyenne pediatrician to send him to the orthopedists in Denver ASAP. Now we incorporate stretching into the physical therapy activities.
Travis' PT is working with Travis to do activities where Travis will bear more weight on his left leg and working on having Travis take big steps with toes forward. Currently Travis' left foot points to the side (a compensation mechanism due to the leg length discrepancy and old brace not allowing ankle movement). He wants Travis to walk with toes forward, T can do this, it's harder and out of T's comfort zone. By taking big steps, the left leg will bear more weight and the leg can support that weight. This is essentially teaching Travis how to walk again with toes forward since he couldn't bend his left ankle since the beginning of June (cast then brace when he was awake).
The physical therapist also feels Travis could benefit from a bigger lift in T's right shoe, ultimately allowing Travis to straighten his leg when he walks. He's contacted T's orthopedist (I LOVE that T is able to see them both at Shriners) and they will get things figured out when the orthopedist returns from vacation. The PT is also helping us figure out the next "stroller" option for Travis. We're borrowing a BOB jogger and that may work since T's outgrowing his current stroller.
Travis did good at OT again this week. He sees the OT every other week and he seems to like her. T even tried the slide yesterday, that's new for him. By the 3rd try, Travis was able to adjust from climbing up the step part to sitting on the slide.
Unfortunately, Travis caught another bug (or two) and wasn't feeling good since early Feb, especially the end of last week. Luckily no big fever this time. I took him in to the pediatrician's office on Sat and T saw one of the other doctors in the group. The bedside manner of that doctor leaves much to be desired and that is stating it nicely. I like T's regular pediatrician in Salt Lake City, but he was off Sat. Travis is feeling better and has done well on his temporary dairy free diet (due to bug 2). T likes his soy milk better than regular milk. ;) Ok, whatever works.
All in all, Travis is doing good. We've had up and down days. Sometimes the sting of being off the drug trial due to plexiform/tumor progression gets to me. So many more questions, questions that there may be no answers or now way to tell...as with many things, wait and see. Thank you for all the support, thoughts and prayers for Travis and our family. I know God continues to hold us in his hands through these stormy waters at the moment. The beginning of 2012 has had rough patches and we're hoping things will calm down for a while.
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