Baricitinib: 1 month and we’re taking steps

Walking Will (click here)

Baricitinib:
4 weeks of Baricitinib and what did we discover last evening? A walking William!!👣

This means we have a lot more work to do, but more importantly, we have progress. I have only seen Will walk in my dreams…it was once and it was perfect. I didn’t think I’d see the day he’d take steps on his own (or even with support). 👣

We are headed back to Philadelphia next week and will get some help with orthotics to support Will’s ankles. In the meantime, more swimming, therapies, and practice. I’m also interested in getting Will a gait trainer. This equipment will support Will’s body while we practice ‘walking.’ I’m going to find out what will be best for Will and ask the therapists to write the letter to the insurance company. We’re ready for more walking! 👣

Adaptive Equipment: AFOs and Standers

AFOs from Maine Orthotics

Will has dystonia affecting his extremities. Because of his strong, involuntary tone, he needs ankle-foot orthotics (AFOs) to hold his feet in a flat position (dorsiflexion), so he can bear weight on flat feet. When standing, or held upright, he points his toes downward (plantar flexion) and cannot stand. Will’s condition will prevent him from walking and standing on his own, so we need to adapt to his limitations and support him into those positions.

In order for Will to stand in his ‘stander,’ he needs to wear his AFOs. Will needs to stand at least twice a day for 20 or more minutes each time (our current goal), so his bones and muscles develop normally. Check out these cute shoes from Old Navy! I love a good deal, and these were only $7.99! Winning!

After Will has his AFOs on, he is able to use a stander. There are prone standers and supine standers. We are trialing these standers so we can assess which type of stander will be best for Will. To obtain durable medical equipment (DME) you need a letter written by a therapist demonstrating the medical need for the piece of equipment you are requesting. A physician has to sign the letter written by the therapist, then it is sent to the insurance company for review.  If the insurance company approves our request, the medical supply company will order the piece of equipment from their vendor. Once ordered, the equipment is delivered to the medical supply company (this takes a few weeks) and they use the patient’s measurements to set up the equipment. It can take 3-6 months to go through this process.

Prone Stander
Supine Stander