Day 86 - Heads Together

Same drill today. Feed some breakfast, get him dressed, slap some lotion on, start therapy. First was ST, then OT/PT. The team met with us to review all the therapies we have (there's a lot) and take notes to share with us in preparation for discharge still on the 25th. We have so many tasks we could be doing with Daniel, we wanted a prioritization of things at least for now so that we can try to fit everything in, but make sure we do the most important things when time is limited.

Here's a quick list of daily tasks: (it's more for me to see the whole list all together than to try and explain each one as I've done that over the course of this blog already)

• Feed 
• Dress 
• Shower 
• Bathroom breaks
• Exercise - short walks
• CPM device
• SCOI
• MPA
• JSS Splints
• Lotion Lotion Lotion
• Arm stretching and range of motion (Probably the most important therapy right now)
• Face mask
• Wound care
• Dressings

We're thinking of ways to use the therapy team with the remaining days here. We've tasked them with finding more difficult stairs to climb and create challenges that will help Daniel maneuver through our home - things he can do here that will be similar to life in our old house. Other destinations include visiting the outpatient therapy area in the AOP 4th floor, visiting the cafeteria where there are lots of tables making the route narrow and difficult to traverse, finding dark stairs or narrow ones like in our home. One place we think it's best not to visit right now it the burn center. That's because we don't want to confuse Daniel with his old rooms and make him think he's going back there. Luckily it's out of the way from all the other places we go so we won't visit there until we return for routine check-ups on his healing grafts.

The therapists are impressed with Dawn and I (mostly Dawn probably because she's a teacher's pet) and our willingness to step in and do the tasks once we've learned the basics. It's always nice to be recognized in this way. Because we've been responsible for Daniel and all the autism therapies and interventions we've done for his entire life, these new burn-related tasks that will be a big part of our daily tasks are things we just accept and do. Other people suddenly faced with dealing with a loved one may not be able to switch into this mode as easily as we have. I'm not looking forward to any of this believe me, but what choice do we have, ya know? We just do it!

Daniel took a really nice long walk. We went outside again today. I suggested we make it harder by going out in front of the outpatient entrance where there is a garden path with pavers and uneven surfaces, low tree limbs and other obstacles. Daniel had no difficulty. We returned to the rehabilitation floor where Daniel climbed the stairs one more time. He's more steady with each attempt.

We had a visitor today. It was Daniel's service manager Sharon from Spectrum. She will continue to be a close ally to Daniel. Soon she will move to the carriage house and may eventually become Daniel's official roommate once he's ready to live there too. In the meantime she has a lot of familiarity with life after hospitalization to help us all figure out "life after discharge". I am glad she's still a member of Team Daniel along with so many new faces we've come to know here at the hospital.

Tonight I'm out with the boys for dinner while Jamie visits Daniel and Dawn. I'm sure they will discuss the new gadgets that are part of Daniel's therapy.