New Skills: New challenges

Gait Training Video

We have seen Will move his legs forward, at times bending his knees at the proper time in the gait sequence. This is progress! He wasn’t able to do this until recently. If you look at the video closely, you can see he needs to be held up and also needs supportive ankle orthotics.

We are headed back to Philadelphia next week and I have asked to meet with our beloved physical therapist. We will have his legs casted and orthotics will be made for him. Also, I’d like to pick her brain about assistive devices that we can use at home to challenge Will (gait trainers or gait trainer/standers). He has shown us some new tricks, let’s see what we can do with some more practice. We are upping the ante on PT…if we need to go to Philadelphia to get what we need to help Will, we will. I’m not taking ‘you won’t be able to get that here’ for an answer again.

Click on the underlined links to see some videos of Will.

Treadmill walking


Baricitinib: 1 month and we’re taking steps

Walking Will (click here)

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! 👣

Progress Update: Beginning Baricitinib

We hit the ground running after being in Philadelphia for ten days, but wanted to write a quick update about Will. We have had a few questions about the drug, so I thought I’d include some information in this update.

Will takes Baricitinb twice a day. It’s a pill that partially dissolves in water; it doesn’t dissolve but breaks down into little particulates. We mix the particulates with other medicines Will takes and orally administer by syringe; he isn’t bothered by the taste or texture when we administer the medication in this way.

Within a couple of days, we noticed that Will had little ‘bursts’ of energy shortly after his afternoon dose; he would become more wiggly and vocal. So cool! He has been more engaging, less irritable, and his appetite is much better. To our surprise, he took some sips from my straw the other day, something he hasn’t been able to do until now. We have been offering him water in a sippy cup throughout the day for the past year but are routinely offering him a cup of milk or water because he enjoys the challenge of drinking from a cup so much. Small steps in the right direction.

We will be going back to CHOP 8/21-8/23 for lab work and a clinic visit. More updates to come!