Day 5 - Physical Therapy In Earnest

One of the nurses noticed that Dan was tapping his foot to the beat of a Disney song when Beauty and the Beast was playing a night or so ago. That was neat. We know he sometimes moves rhythmically to music and movies so this was encouraging to hear.

We met one of the OT's today even though it was Sunday: Her name is Katie and she will work most Fridays, additionally we have Jen (primary Mon-Thu), and Amanda. All of them may cover on various weekend days.

Jamie our long-time friend - she's worked with Daniel just about every week for ~13 years. As she works as a professional OT we wanted to definitely get her knowledge in the mix with the OTs here. Cosmically Jamie was here when Katie the OT was here (on a Sunday mind you) and they quickly bonded and shared knowledge about burn patients and the uniqueness of working with Daniel. This comes just at the beginning and smooths SOooo many concerns I had with staff coming up to speed with working with our non-verbal son.

So far Dan has had a good day. His daily report was solid. Nothing major to report. We're not overly worried right now about the casein in his food supply and besides there aren't options for different protein rich mixtures that won't have casein.

Things on our to do list:
Keep talking to Daniel when we are here. He needs to hear our voice. (Doctor's orders).
Make a page on Dan's Talker for PT exercises and maybe breaks that he's capable of.
Get pictures of staff to put on his talker.
Make a music playlist on his talker that can be for when the OTs work with him to help him understand that it's work time: "Good Mother" and "Baby Elephant Walk"
Make a picture schedule guided by the OTs to show Dan as he works through the steps of therapy.

Here's a list of notes exchanged with the OT:

Guidance from Katie (OT) [Okay I’d say this is more Jamie than Katie, but that’s just me and my bias - MG]

• Start continuous cycle of designated 2 songs (Elephant Walk and Good Mother) to play during all therapy/ROM times so Dan can learn to associate and anticipate therapy/movement when he hears those. Turn the movie off during therapy.
• Watch all lines and tubes
• PROM distal to proximal
• 30 sec each joint, 2x
• Start with flexion
• 30 second breaks
• Slow progressive stretch and hold until resistance, back off and then try to get more range
• Work one side at a time
• Abduction pillow for shoulder prolonged stretch: flexion or abduction, goal for 2 hours on and 1 hour off
• Feedback Daniel can give:
• Tone difference like a deep/low moan when he's distressed
• Happy sounds(high pitched vocals) when he's enjoying it
• Daniel does not like being wrong
• He wants to make people happy
• Provide verbal details to Dan what you are going to do and how he is handling it
• Simple short instructions
• Calm voice, tone are very important to Daniel
• Avoid saying “No”, instead say “Try again” or “This way”
• Once eyes are open - Pair verbal instructions with gestures
• Dan will read your facial language - eyebrows, voice and eyes are super huge for Daniel to key off of.
• Happy soothing upbeat voices work better.
• Dan has a hard time expressing his pain level and that will lead to frustration.
• PROM to bilat LE WFL, beware of L hip dialysis port
• Do NOT untie/tie restraints, ask RN or therapist to assist
• Avoid neck flex, promote extension if possible
• Stop music when therapy is over to keep the association with Therapy Time