Great news for Travis filled the past few days, from IEP to next year's teacher to orthopedic news. :) Travis continues to amaze and inspire us all. Have I mentioned how T is a rock star?!
Tuesday afternoon we met Travis' teacher for second grade this fall at his IEP meeting. Even before the meeting, she researched information regarding neurofibromatosis to better understand and help Travis. I think her class will appropriately challenge Travis, just like Kindergarten and 1st grade where his confidence soared. IEP goals correctly identified the areas where Travis needs support, we all felt good leaving the meeting. The teacher showed Travis her classroom and gave him a tour of the school, he will attend the neighborhood elementary school this fall. As with other moves, this is a bittersweet transition.
Travis continued to make improvements in physical therapy and the PT "released" T from regular appointments since T is doing great. If we see things regress, regular PT will return. We are to keep doing what we are doing and the physical therapist loves that T wants to get out and play...the best type of therapy. A few months ago the physical therapist (aka Mr. Mark) showed Travis a regular bike outfitted with fatwheels. These wheels stabilize the bike, making it stable like T's Shriners bike. T took the bike for a "test drive" and learned how to pedal a regular bike. By the end of the drive, he was cruising around.
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| Trying out a typical bike |
Travis said he wants a Cars bike and T is looking forward to going to the store (a regular store) to pick out his next bike (a regular bike). I cried so many happy tears during this visit.
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| X-ray of hip to toes, Travis style |
Today brought Travis' routine orthopedic appointment with Mike Pond. Orthopedically-speaking, Travis looks great and we are to return in 6 months (or the ever present, earlier if needed). I think Mike enjoys seeing Travis and getting a "win" in the orthopedic issue NF category when "wins" aren't guaranteed. He wanted to reduce the amount of lift on Travis' right shoe from 8cm to 5cm since Travis' effective leg length discrepancy when standing has changed from last fall. When measuring T's legs separately, the discrepancy remains ~7cm (left longer than the right).
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| Physical exam with Mike Pond, ortho guy extraordinaire |
Mike wrote an order for Travis to get a new brace, the top of T's AFO was about 2 cm below where it needed to be to protect the top of T's tibia. T got his last brace almost a year ago, so this makes sense. We went to make the orthotic appointment and they had an immediate opening with the guy Travis saw last time. The team removed the bottom 3cm of T's current lift while they made a cast of T's left tibia and foot to make the next brace. While looking through the available color and design options for T's brace, we had a great idea for the design on the brace. The orthotic guy asked his colleagues to see if our idea will work, we think it will. While keeping the details a secret, this brace will be perfect for T.
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| Removing the cast form Shriners will use to make the brace |
Travis received his 10th Peg-interferon injection this afternoon, and subsequent donut. When T went to bed tonight the Tylenol - Ibuprofen plan was still working. He had a slight headache tonight, but felt good enough to sit with me to watch "The Lion King".
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| The Peg-interferon medicine box |
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| This week's donut |
May is NF Awareness month, what a way to start off the month with a continuation with great news. We pray this month continues as great as it started. Thank you for the continued prayers and support for Travis and our family.
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