Reilly Update

Since the last update, a whole new world has opened to Reilly after having figured out his trunk support, the battery for his humidifier, and having the vent mounted to the back of his wheelchair.  For so many years, he’s been stationary or tied to a wall outlet, and we love to see him mobile and explore like a kid.  His common retort when asked where he’s going is “Anywhere I want”.   
 
Reilly was able to finish 3rd grade in person and has been attending in person & loving 4th grade.  We cannot express how supportive and accommodating the school has been through our ups and downs.  He’s so lucky to have such a great caring team.  Speaking of, can you believe he’s in 4th grade???  Although Reilly doesn’t love everything he’s learning, he has met or exceeded grade level expectations in terms of his education.  He continues to have “Lunch Bunch” with 3-4 different kids from his class.  It’s been such a delight to see the kids engage and interact with him.  Before the end of 3rd grade, he was able to drive himself to the playground for the first time since preschool and the kids were SO excited to see him. 
 
Since we haven’t been able to do any real outings in almost 5 years, we did several fun summer ventures with Reilly.  He decided his outings would include a trip to the San Diego Zoo, Birch Scripps Aquarium, and Legoland.  Unfortunately, COVID derailed our 4th planned summer outing, but we can continue to explore more and more. 
 
Although we are exploring more as a family, we are in the market for a new van.  The MV1 has served us well over the last 7.5 years, but since manufacturing of this van stopped in 2013, replacements parts have become almost impossible to find.  It also has an extremely stiff suspension that’s a bit too rough of a ride for Reilly which makes longer trips impossible.  We started the search for a new van with some crucial parameters (entry access, van height, seat layout, garage height restrictions, power outlet, etc.).  This seems to be a little more complicated than we expected.  I’m sure we will find the correct van to fit our needs when the time is right.  In the meantime, we will continue to take good care of the MV1 while we continue this search.  Who knows, maybe next summer we can do a road trip outside of San Diego.
 
With all the previous medical issues and before becoming mobile, we kept doctors’ appointments to high priority only and put off others that we didn’t feel were vital.  Although important, the dentist, eye doctor, and dermatologist were a few that we felt could wait.  We cancelled our last dental appointment for Reilly back in 2020 due to Covid restrictions and he hadn’t been to one until recently.  Since getting his power chair, there was no way he could be seen by his previous dentist.  We received a referral from his rehab doctor for a dentist that could accommodate kids with special medical needs.  This worked perfect and to his dismay, he will have a dental procedure this winter.  Another appointment that we put off was the eye doctor.  We know that Reilly struggles in school with distance and he finally had his eyes evaluated.  He was not a big fan of being dilated, but it’s done, and our little cutie will look cuter with glasses to help him see far away.  Next up on the docket is the dermatologist.
 
Fun Fact…Reilly’s favorite holiday is HALLOWEEN.  This year his big request was to throw a Halloween party that would rival his Grandma Barbara’s annual celebration.  This was a tall order, but we tried.  He was so excited and would tell everyone he came across.  At some point, we had to be the voice of reason and put a limit to invitations.  He had several of his friends from school along with family and close friends and he really enjoyed everyone’s company.  He says it’s up in the air whether this will become an annual event or not.
 
As 2025 comes near, we hope for more family adventures to fulfills his curiosity.