Travis did good with his blood draw and lab work this morning and really wonderful during the exam with Dr. Viskochil. While blood work isn't his favorite thing (that's stating it mildly), he did tell the lady that drew his blood "Thank you" as we were leaving the lab. He also said "Hi" to her when we saw her in the hospital cafeteria when we went for breakfast. Too funny.
As always, another very informative appointment with Dr. Viskochil. Travis continues to do well taking the rapamycin and shows no signs of side effects, without having the results from his blood work done earlier in the morning. We were able talk some about Travis not wanting to walk as much as before, he's been asking to be carried more since the mid-late summer (not related to the drug trial). The doctor also noticed that T's left calf is slightly bigger than the right, I don't think that was noted during Travis' exam in early October. I had thought I had noticed that over the past few weeks, but wasn't sure. It's pretty subtle, like his thighs were a while ago. We'll see if/how this changes over time.
It was wonderful to be able to talk with Dr. V about T's NF issues with him seeing Travis in person and how things have changed over the past 2 months. He also went over regions of plexiform involvement in the pelvic/hip/abdomen area from the MRI pictures that he brought. Several questions came up from this and he will be checking on them in the coming weeks.
He is also concerned about Travis' hip structure and thinks it may be driving the tibia/knee issues. With the hip being out of normal position, this puts pressure on the tibia/knee that does not normally experience or designed to take those kind of forces. He will be talking with T's docs at Shriners to go over in more detail these bone issues. Also, it is looking more likely that Travis will need a "brace"...more like a shin guard than a brace...on his left tibia. This "brace" would protect T's tibia from breaking due to a direct hit to the tibia. While T's left femur is unusually narrow, it is surrounded by muscle and tissue to help protect it from breaking.
After the exam, I went with the research coordinator to get T's rapamycin and turn in the journal paperwork for the first course. She is a wonderful person and I wished I could have met her under different circumstances. Oh well, we know her now and Travis likes her too. She's been a tremendous help through this whole process and walking me through some of the blood work steps so we can have that done in Cheyenne (when we're not here).
Speaking of blood work, Travis will have to have another blood draw in Cheyenne on Friday. We will know the results of today's blood draw and we still need 2 consecutive blood draws within range.
Thank you for all your prayers, support, thoughts and help. Thank you so much Ali, Janelle, Ken, and Carol for taking care of the older boys while Scott's been at work. We are so grateful for your help.
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