Kevin’s condition going forward

As you know, Kevin’s current prognosis is that he will require the assistance of a ventilator for the rest of his life. However, we are exploring all potential options to help him breathe on his own because that will be much more comfortable and reduce potential complications going forward.

Kevin is being considered for a surgery that could help him breathe on his own, if only part-time. The surgery’s goal would be to help restore the function of Kevin’s phrenic nerve, which controls the diaphragm. It’s important to note that we do not know whether Kevin will ultimately be eligible for the surgery or whether the surgery will have the desired effect. In the coming weeks we should have a better picture whether this is a possibility. But we’re hopeful this will help.

In other news, Kevin will be coming home in a few weeks, so we’re starting to get the house ready for his arrival. Which leads us to…

Equipment and other items

If you or anyone you know has medical equipment or other items that you think would help, we would love to hear from you. Please contact Marianne Kaplan at mariannekaplan@kaplancn.com

North Bowl – Huge Success

Thanks to everyone who came out and helped make the event at North Bowl such a great success! The best part was that Kevin was able to watch a livestream of the event, so he could see everyone bowling and the amazing community he has to support him.

We are so grateful for the amount of support shown at the event and for the amazing work of the organizers and hosts, especially the folks at North Bowl. All told, the event raised about $20,000 to help Kevin going forward.  We are completely overwhelmed by the amount of contributions everyone made to help Kevin. We have a lot of people to thank, so keep an eye out for a special thank you page coming soon.

We’re gearing up for the event next Saturday, which is sold out. T-shirts will be available at the event. See you soon!

Some quick updates on our upcoming events:

North Bowl – 1/29/12
The bad news is that spots to bowl in the tournament are sold out. The good news is that there is still plenty of room to come down to North Bowl, get some drinks and food, have a great time, and support Kevin. North Bowl has generously offered all of the nights proceeds to go to Kevin’s Trust!

Boothwyn Fire Co. – 2/4/12
There are only about 50 tickets left for the event!  Please make sure to email me at nearyjp@gmail.com or visit http://www.kevinneary.eventbrite.com to get your ticket!

Anyone who has raffle items for the event can contact me at nearyjp@gmail.com to make final arrangements.  Thanks to all who have offered to help or donate!

More to follow soon on Kevin and his progress…. please stay tuned!

Just a quick note to let everyone who was planning to see Kevin today that he is in therapy until 3:00 today, so he won’t be able to take visitors until then. (Normally he doesn’t have therapy on the weekends.)

Stay safe in the snow!

A week’s worth of updates….

It’s been a week since we last posted, so we thank everyone for your patience. It’s been a busy week with both of us  traveling and dad holding down the fort. There has been a lot of progress in terms of Kevin’s rehab and ways to support Kevin.

Here are the big notes for the week:

 Kevin’s progress…

There have been some great developments recently.  Kevin is now in a power chair that he can control with a straw. It’s really great that he can shift his own weight as needed — as you may know, weight-shifting is really important to help avoid sores that can lead to infections, which can delay Kevin’s rehab. We’ll get a better sense of what his final chair will look like as he gets closer to his discharge date, but for the time being he’s getting used to the functions of the chair.

Kevin has also been cleared to eat a full menu. This means he can eat whatever he wants, which is great news. Previously he had to eat pureed or ground hospital food (yuck!). Now he’s able to enjoy some of his favorites.

He has been in pretty good spirits the last few times we have been there. Thanks to everyone for continuing to come and visit. Hard to believe he will be home in about 3 weeks!

Events (including the NEW LOCATION for the Feb. 4th event)…
Updates on events will be on our events page but here are some highlights:

North Bowl
This looks like it will be a great event!  If you haven’t signed up already and are interested please contact leagues@northbowlphilly.com If you are not able to reach North Bowl please contact Joe at nearyjp@gmail.com.

February 4th
Thanks to an overwhelming response to the event on February 4th, we had to change locations. The event will now be located at the Boothwyn Fire Company (1405 Meetinghouse Road, Boothwyn, PA 19061). We have sold over 200 tickets and are quickly approaching our capacity. If you would like to purchase tickets in advance please visit www.kevinneary.eventbrite.com or email Joe (JP) at nearyjp@gmail.com

“Night for Neary” – March 16th
When: Friday, March 16, 2012
Time: 8:00 p.m. until 12:00 a.m.
Where: 8500 Furey Road, Upper Chichester, PA
Contact: Joan Morrison – upperchirec@yahoo.com

Offers for help from charitable organizations
Many of you have shared with us various charitable organizations that may be able to help us with expenses. We appreciate and welcome all of these. I twill take us some time to assemble the list and reach out to these groups. As these connections are made we will surely share them with everyone.

Online donations
We are still in the process of setting up a way for folks to donate online. We will post that to the website as soon as we do so. Thanks for your patience.

T-Shirts!
And last but not least, we have a design for Kevin t-shirts. Thanks to the folks who designed it and ordered it. We initially have ordered some that will be available at the events, but will likely be doing orders in the future. We’ll let you know how to get one — it’s sure to be a hot fashion commodity. The designs were approved by Kevin himself!

 We’ll have more updates in the coming days and weeks. Stay tuned and thank you all again for your support.

It’s hard to believe Kevin’s been at Magee for over a month! He continues plugging away at rehab, but there’s not much to report on that front. Kevin continues with his physical and occupational therapy so that he can gain as much independence as possible before coming home. He has been in really good spirits lately, as those of you who have visited probably know. Kevin was given a new trach tube that enables him to speak more easily, so he’s been entertaining his guests with his quick wit even more recently. Thanks to all of you who have visited and helped lift his spirits.

Events

A few of us met yesterday and made some progress on the several events being hosted to help with Kevin’s long-term needs. We know some of you have had questions about the events. We will have an update with more details on the events coming shortly that should address some of those. Stay tuned.

If you have any items you would like to donate for a raffle or silent auction, please email Joe (JP) at nearyjp@gmail.com.

Trust

We’ve set up an email for the Kevin Neary Trust. If you have any questions regarding the Trust or how you can help, shoot an email to kevinnearytrust@gmail.com. We are still looking at online options for giving, which we know is probably much easier for many of you. We will have that info available as soon as possible.

Thank you again!

It has been a few days since our last post.  Thank you to everyone who kept checking on the site for updates.  This week is the first time both Chris and I have been away from home for an extended period of time since this all started.  We both appreciate your patience with us! This update is going to be brief but we should have another one coming with much more in the next day or so.

Recent developments…
– Kevin has moved from pureed food to a more solid diet.  Everything is still ground but but this is a good step.
– My dad has been able to meet with our attorney, and they have set up a Special Needs trust for Kevin.  This work was done pro bono and we are very thankful for their help!
– Many people have asked where to send donations. We know now that checks can be made payable to the “Kevin Neary Trust” and can be sent to our home address found at the following link:  https://kevinneary.com/contact-information/
– Fundraisers are still being set up.  Please make sure you click on the events tab for more information.  Thank you to all who purchased on of the 120 tickets for the event at Barnaby’s.  They can still be purchased at http://www.kevinneary.eventbrite.com

That about covers all of the major developments and we will have more to follow in the coming days.

Happy New Year!

JP