Daniel’s Story

Site created on January 4, 2020

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Newest Update

Journal entry by Jodie Pine

Right after I posted yesterday's journal entry, Daniel's new shoes arrived. I had been tracking their journey on my phone and silently cheered that they arrived a full hour before his orthotist apointment.

It's what I'd been hoping for--that we could take the new extra wide shoes and get adjustments on the left brace, that he hasn't been able to wear yet--before Monday's surgery.

But I knew there was a problem by the size of the box, how light it felt, and then the "Infant" sticker on the side. Opening it up, we discovered a  miniature version of Daniel's shoes. 

So much for perfect timing. All we could do was laugh.

I cancelled the orthotist appt and then contacted New Balance. They sent me a return label and then "because of my trouble" graciously took $10 off my order for the right size shoes, even when it was most likely my mistake and not theirs. I give New Balance 5 stars on their customer service.

This morning I had the idea of calling to see if Daniel's Physical Medicine and Rehab doctor might have time to see Daniel today. He actually had an opening at 10:15!

This is the dr who gave Daniel botox injections in his legs last July to try to improve his spasticity. He was planning to give him a second round of injections in Oct, but Daniel ended up being hospitalized then. He visited him on his rounds and decided it was better not to repeat the botox injections because of Daniel's leg tremors.

October was the last time we'd seen him. 

This morning he was able to evaluate Daniel's gait, spasticity, ankle movement, foot strength, and knee pain. It was really helpful to hear his input in these areas, as well as to obtain a baseline so he will be able to do a post-surgery comparison.

One of his ideas was that it might be worthwhile to adjust Daniel's braces to allow for ankle movement. We can evaluate his walking post surgery before making a decision.

He was very interested in having a joint appt with Daniel's physical therapist and orthotist to collaborate on what might best help Daniel with his walking and balance.

If the right shoes had arrived and we had kept the orthotist appt yesterday, I don't think I would have had the idea to contact the PMR dr today. The rehab appt ended up being more valuable in the long run.

Thankful for the way that mistakes can become blessings.

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