We really like Travis' orthopedic guy (Mike Pond) at Shriners, and most importantly Travis does too. :) He also really likes Travis. He walked into the room and asked how it was going with T. I handed him the MRI report, labs, and x-rays Dr. Viskochil would like done (probably would have been done anyway) and said we're concerned with #2 on the leg MRI report. You could see his face turn from a smile to a more serious look while he was reading the MRI reports and lab reports. I think the reports caught him off guard too and not quite the visit he was expecting too.
Ortho result..."probably infiltration of the (plexiform) neurofibroma into bone in the interosseous nerves". Translated, meaning the plexiform is progressing along the nerve that goes through the bone. There may also be some bleeding. Mike was already planning on meeting with the orthopedic surgeon, Dr. Lor Randall, on Thurs (5/9) to discuss another case, they will review T's case also. Mike spoke with Dr. Randall this afternoon to have him look over the images. Mike Pond called Dr. Viskochil and went over his findings while we were still in the exam room. Apparently this is not very common.
Mike Pond said he has seen this a few times before. One of the concerns with all this is if the plexiform could be transforming into a certain type of cancer associated with plexiforms, we've known this could be a slight possibility since learning about the plexiform over 3 years ago. Typically there is a lot of pain when the transformation happens, waking at night and not being able to eat. We are NO where near that; however, the Dr. Randall will make the decision regarding if a biopsy, another type of scan, or something else may be warranted or to watch and see. Travis' will have more lab work at the end of May.
He had a student with him and asked her to come in on the case and observe. The student was able to observe T's knee flexion contracture along with weak left hip flexors and abductors. Since T's genetics appointment on Tuesday, we've been carrying a camera for T to photo document his time in the drs. T was having fun taking pics and I got this one of Travis and Mike Pond.
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| Travis taking Mike Pond's picture. |
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| The picture T took. |
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| The pic Mike Pond took of T. |
X-rays were taken of the femur and tibia, no fractures (most common cause of what was seen on MRI). Typically I am asked to help keep T's leg into position when normal x-rays are done (not when he's hurting thankfully).
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| Mom holding T's leg for femur x-ray. |
Travis is outgrowing his space brace and an order was put in for Travis to get a new brace. Fortunately Kevin, the guy we see in prosthetics and orthotics, was there and molded T's left leg for his next brace during his lunch hour. He's so great with Travis. T's brace should be ready within a few weeks.
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| Putting the mold on Travis' leg |
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| Cutting the mold off T's leg. |
For now, we wait until we hear from Mike Pond regarding his meeting with Dr. Randall on Thursday. Glad they are not feeling the urgency to meet earlier, there is some relief in that. I am so thankful to God and His guidance through all this. I am grateful He led us to decide to put Travis back on rapamycin when we did. No matter what Travis has MRIs every 3 months. Being on rapamycin, Travis sees Dr. Viskochil every 4 weeks rather than yearly or so. Also, Travis has routine blood draws being on rapamycin that caught some of the blood work changes that may correlate with the MRI findings. We are where we need to be doing what we need to do. Thank you for all the prayers, thoughts, and support, words cannot begin to describe how we feel so supported.
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