It’s been a long time since we’ve updated. Our family has been busy with the transition home. We will do our best to provide updates more frequently! We have a fair amount of updates on Kevin, his condition, what we’ve been up to, and some announcements about upcoming events.
How’s Kevin doing?
Kevin is doing pretty well. While we have encountered some challenges with his transition home, Kevin is healthy, stays busy, and continues to have a positive attitude. Most of all, Kevin is also grateful for all of the support that everyone has shown him and appreciates having people come hang out and talk for a bit. While Kev misses all of his people at Magee and the many Philadelphia visitors (he was quite popular there!), he has had a steady stream of visitors at home. If you ever feel the urge to stop by, feel free to come. He is generally ready for visitors from the early afternoon on.
The most important update on Kevin’s condition is that he is currently scheduled to have surgery to try to restore functionality to his phrenic nerve, which controls the diaphragm. Because Kevin has limited diaphragm function, he currently needs the ventilator to do the breathing for him. The problem with the ventilator is that it’s a big impediment to getting around and can lead to health complications. That’s why the phrenic nerve surgery is our focus right now — if successful, it would enable Kevin to breathe without the ventilator for some portion of the day.
Right now, we don’t know whether the surgery will be covered by insurance and we do not know exactly what the cost will be. We are hopeful that the surgery will be covered; over the long term, this surgery has the potential to add years to Kevin’s lifespan and give him a significantly better quality of life.
The surgery is currently scheduled for March 30th, but that may change. We will update the website with any pertinent updates.
What else have we been up to?
Friends and family have been busy getting a few items that Kevin will need going forward. In large part, these are not expenses that are covered by insurance, so this is where the tremendous fundraising efforts have had a big impact.
First, we are on the verge of purchasing a van that will enable Kevin to get out and about. He has been at home since he left Magee; once we have a van, he will be able to be the man about town he has always been. We’re hoping we’ll be able to make it to the Phillies’ Opening Day as a family – for the Nearys, this is akin to a federal holiday.
Next, we are working with an architect on potential designs for the addition to the house that will provide Kevin with his own bedroom and, at his request, an office so that he can get back to work. The addition will be custom tailored to Kevin’s needs, so it will significantly improve his independence and quality of life. We’re also hoping to make it more visitor-friendly. (Side note: We appreciate everyone bearing with us as we get used to having more visitors.)
We’ve also made several changes to the house and purchased a number of items that are essential for Kevin’s care and are helping him get back into the same routine he had at Magee.
We are tremendously grateful for everyone’s help, whether financial, logistical, or otherwise. They have made the transition so much easier for Kevin, and we don’t know what we’d do without it.
Many of you have asked for event updates, including how to purchase tickets for the Union Trust event. We have some updates below and on the events tab. If you have event ideas or would like to help, please contact JP. We will get details up on the Events tab for other events as they come together — thanks for your patience!
March 9th – Derwood, MD Knights of Columbus event
Kevin’s Uncle Chris Kelly and Aunt Denise Neary have put together a Family Night with Knights of Columbus Council #2323. The event will take place in Derwood, MD from 6:30 – 10 p.m. Please see the events tab above for details on the event and how to RSVP if you live in the area.
March 16th – Night for Neary
We’re all set for next Friday night’s event! Unfortunately, ticket sales are not available online, so please contact Sean Swayngim if you would like to buy tickets in advance – 610-864-3497 or email: Swayngim147@msn.com
May 6th – Union Trust Benefit
Big news – tickets are now on sale for the Union Trust brunch event! The fine people at Union Trust, where Kevin had been working recently, have teamed together with some of Kevin’s dear friends to host and organize this fundraiser. It should be a really fun event with a hearty brunch and exciting auction items, so get the tickets while you can! Tickets are $125 (including tax and gratuity) and the proceeds from the event will go to Kevin.
To buy tickets, please contact Sarah at Union Trust (firstname.lastname@example.org or 215-325-6000) or Melissa Magness (email@example.com).
The brunch will be a buffet style and, most importantly, delicious (Kevin wouldn’t have it any other way.) If anyone plans to do the Broad Street Run that morning, we’ll be able to accommodate a slightly later meal since it will be a buffet.
For more information, check out the events tab and the flyer on the FOKN facebook page. https://www.facebook.com/photo.php?fbid=929077958495&set=o.363971043613402&type=1&theater