Reilly’s doing great in school and the kids seem to be very accepting, friendly, and excited when he’s around. He’s still not able to complete a full day of school yet, but he’s getting there and so far his back looks great.
Rough plumbing and electrical are mostly complete. In addition, the windows are installed. It is moving along and Reilly and his family are so excited to see the progress!
Being full time caretakers for our son (in addition to working full time jobs) is something that we are grateful for in that we received the necessary training and support from medical staff, family, and friends to get from where we were to where we are today. While exhausting in the extreme, we can provide our son with needed medical care on a daily basis as well as be there for him in ways that only a parent can be – reassuring him that all of the scary things that are happening are actually good (trach care, physical therapy, new wheelchairs, etc.), customizing his equipment and daily routines to better fit his daily schedules, the list is endless.
Reilly’s forever home is coming along nicely! Roofing has started as well as the interior rough plumbing and electrical.
We're so excited that the next phases of Reilly's forever home have taken shape after so many delays due to the pandemic. The house is now framed and then onto the facia!
Even with Reilly’s pressure sore on his lower back finally healed up, there is still a lot to do to prep him and his equipment to get him ready to go back to school in person.
Until recently, Reilly has been lying exclusively on his side and rotated every few hours, day and night, to avoid any new pressure sores. As such, we need to work him up to sitting upright slowly, not just so we don’t reinjure the healed pressure sore (which will always be susceptible to reinjury in the future), but also to build up his strength and stamina.
Reilly remains in good spirts. Most days he’s his normal happy, spunky, feisty self. But let’s be real for a second and point out that like other six year olds, he definitely has melodrama moments...lol.
Reilly wrapped up kindergarten with flying colors and excelled in reading and math. Although virtual learning was a God send this year, we’ve discovered that given his condition and attention span, the best place for him to excel will be back in the classroom. We met with the school and picked a classroom that will suite Reilly’s needs. His IEP seemed promising and we are looking forward to working with the support team. In the meantime, we are still trying to navigate through many other obstacles before he can go back at the end of August.
Mark Daggett + the great Randy Jones
Tony “Tone” Thogmartin Photo by Jam Press
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