Shriner's Appointment

Wow...can spending 3 hours at Shriners really go that fast?!?  Long morning of appointments, but totally worth it.  Fortunately Travis had fun playing with Grandma and other toys there.  Shriners is really great, we are so grateful to have Travis see doctors there.

The morning started off with Travis seeing Mike Pond, the Orthopedic PA we saw before.  He did another thorough exam of Travis and did more x-rays.  He noticed that T's lower left leg is out at more of an angle than when we were here in October.  The x-ray showed the angular deformity / valgus / knock-kneed at the top of the left tibia has worsened in the past 4 months, probably 15-20%.  This may not be all bad news since Travis has grown since they last saw him here and that top of the tibia issue could be a result of the growth spurt.  The PA said that there is a chance that the deformity can get better on its own and it's something to be followed closely.  We'll see what the trend is over the next few Shriners appointments and go from there.  However, if the valgus continues to worsen, they would put in the "8" plate earlier than what they were originally thinking.  He said there is a point where they cannot fix valgus issues and I have no idea if Travis is anywhere near that point. 

The good news is that Travis' tibia looks to be doing good and no significant changes.  Woohoo!!!  We will see the guys again at Shriners when we are back at the end of April for T's end of course 6 exam, provided he's still in the rapamycin clinical trial.

While we see the PA at Shriners, Travis' medical issues are discussed among the doctors at Shriners.  We met one of the docs that the PA works closely with and that doc will be part of the surgery team for Travis when they do the procedure to bring the knee into alignment and the shutting down the growth plate.  He's also amazing and I really like him too.

Now in all this, Travis was such a good kid waiting for the line at x-ray and during the x-rays he got a large wooden train that has about 7 pieces.  Each piece fits into a Wal-Mart bag...there's an engine, a tanker car, and other ones.  Ummm...ok?

After the appointment with the orthopedist, we went to meet with the guy that made T's brace.

Travis' clamshell brace for his tibia.

Travis holding his clamshell brace.

He had Travis try on the brace and made some marks to fine-tune the brace to T's foot and calf.  Travis did great trying on his "boot" (as he calls it) and letting the guy make the marks.  When the completed brace was done, he put the brace back on Travis and we tried on T's next size Lightning McQueen shoes to see if that would work.  Fortunately, we were able to fit T's foot in the bigger shoe with a little effort.  He also brought out a cool black and red tennis shoe and that worked also.

It was hard to watch Travis adjust to walking in the brace (shoes on).  He doesn't like the brace and wouldn't want to try to walk.  We were able to get him to walk holding on to my finger and he did end up walking some on his own...with the incentive of a granola bar.  ;)  Actually he looks better walking in the brace than not and his left foot is more towards the front than to the side.  He was able to add padding to the front brace piece and I think T was okay with that.  Travis likes the look of the brace and calls the darker spots on the design a penguin.  He has to wear the brace during active play, pre-school, the rink, or anywhere where there is potential to break his tibia.  He does not have to wear the brace at night nor when he's hanging out at home during the day while brothers are at school.

From there we went to see the photographer for Shriners and he took a few pictures of T's legs so they would have a visual reference point.  Travis did great and got to pick out a stuffed animal since he did so good getting his pictures done.  He picked out a black and white cat and is still deciding on the name.  Right now he's calling it "Black Rikki" (Rikki is the name of our/my cat at home).  We may need to add another room to the house for all the stuff he's getting.  ;)

We met with the clinical trial research coordinator after lunch to turn in the paperwork for course 3.  I had a few logistic questions for her for the clinical trial blood draw at tomorrow's MRI and Monday's exam.

Speaking of the MRI, we arrive at 8a and the scans start at 9.  All-in-all it should take 3-4 hours from the time we arrive to when we can leave after he wakes up from the sedation.  Not sure what we are doing tomorrow, but we may go to the Utah-Air Force college basketball game with comp tickets given to the Ronald McDonald House.

Thank you for your thoughts and prayers.  I'm glad that we are in such good hands and Travis has a wonderful medical team.