Time Flies! Reilly will be turning 7 in June!
Reilly is really thriving in school and he has an amazing team to help support him along the way. We’ve had some struggles that have prevented him from attending school for a full day, but we’re optimistic that he will be able to attend 2nd grade for a full regular day. Right now he’s not able to tolerate his portable vent for more than 20-30 minutes because it doesn’t humidify him enough and he’s still afraid to try his phrenic nerve pacers. This limits him to the classroom during the lunch break, so he can stay on his regular, stationary vent. His teacher has created the “LUNCH BUNCH” where 4 kids are randomly chosen from his class to eat lunch with him. Reilly’s really blossomed and enjoys interacting with the kids. In return, the other kids are all very receptive and enjoy their time with Reilly too!
Reilly is doing great in his power wheelchair and has become so comfortable with his maneuvering. His ability to navigate tight spaces is improving all the time! I’m sure it will continue to improve when we a move into the house and go on more outings. As he’s gotten taller and bigger, we’ve had to adjust a lot of our day-to-day accommodations to care for him, but this is to be expected. Since his pressure sore, he now has a full-size pressure relieving adjustable bed to help keep his skin healthy and extra room is case he needs extra snuggles at night from mom or dad. Since his powerchair should only be used for a portion of his day, we’ve found a small recliner with power controls to adjust his pressure points and a special support overlay to help keep him upright. There was a little apprehension at first with these changes, but now he doesn’t think twice about his daily routine.
Reilly’s forever home is coming up to the finish line and we are all anxiously awaiting the completion. The floor plan was chosen and modified to accommodate his powerchair and specialized equipment in every room of the house.
Reilly’s made a couple of site visits and LOVES to blast his horn in the great room to hear the echo. His favorite room so far is the office because he’s looking forward to playing video games with his best gaming buddy (Dad). We will have a desk setup so that he will be able to roll up and play the games on his quad stick whenever he wants.
Reilly is also looking forward to being able to explore outdoors and has been picking out vegetables with mom that he wants planted in his raised vegetable garden beds. He’s such a nature lover. He can’t wait to see all the birds and butterflies, so Mom has put a little extra effort into finding plants to help support the ecosystem and bring in as much nature for Reilly’s enjoyment.
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