And that concludes my demonstration on procrastination, thank you all for following along. We’ve got some great updates!

First, congrats to those of you who stuck it out and graduated instead of playing hooky like some people we know. It is an amazing accomplishment and we cannot wait to see what great things you all do in the future!

Second, our Shoutouts! When Billy came home he had 3 pressure wounds (aka bed sores) that have been our main focus, as these need to heal in order for him to be able to go to rehab. And we have been extremely lucky to have had Lori Garbarino as his nurse since the very beginning. She has come to our home with a smile and a gentle hand to care for his wounds and to provide whatever additional care he may need. She has come to our home at all hours to deal with a myriad of issues and we truly cannot thank her enough for all of her hard work, expertise and good humor throughout these many months of treating Billy’s wounds (more on those later). She has made so much of Billy’s care possible and has done an amazing job of helping us learn how to care for Billy, it is never easy to be someone who is entering other people’s homes and she handles it all so well, she provides welcome relief to everyone and Billy especially appreciates having an extra person to gab with!

Next shout out goes to my friend Matt Amato, he is a super talented person and was kind enough to create our logo (I've attached it below). He was able to take my initial drafts (which even a preschooler would have found jejune) and turned it into something absolutely amazing. We cannot wait to start seeing it everywhere! 

My last shutout goes to Louise Pietroforte, who designed the curtains as the final piece to Billy’s bathroom. It is truly the icing on the cake, and I am including a video of the bathroom below so you can see the amazing work that Chris Leadan and Louise put into it (please note that the trees are bare not because I shot this months ago but because I am amazing at photoshop)

Alright that is it for Shoutouts let’s get into the fun stuff!

Jelly Rolls is officially back in the house! Charlie and I may have teased Billy for his belly rolls when he was younger but we are truly excited to have them back. Billy has gained a good amount of weight and is continuing to gain more (I have been instructed to insist that mom’s cookies have nothing to do with it… i belive they are attempting to shift blame to the coffee cakes). Billy is as positive as ever and has been able to start getting out a bit more, whether it’s hanging with friends around the fire pit or soaking up some sun (with plenty of sunscreen of course), Dad has enjoyed making his signature fried bologna sandwiches for him, and Mom is always there to shower him with love... he’s really enjoying being at home (psssssst Billy blink twice for help). In all seriousness, my parents had essentially swapped roles when Dad retired and Mom continued to work full time. They have both embraced this transition and are doing such an amazing job. It’s not easy to do something like that and they continue to amaze me with how well they have been able to create new sustainable routines.

Speaking of routines, we have switched our wound care team to Southampton Hospital, where they have taken a much more aggressive approach with his wounds. This includes Hyperbaric oxygen therapy 5 times a week (some of you may be putting it together that Dad may have retired but he still has the pleasure of commuting to Southampton, although he says that the traffic is much better at 11 am than it is at 7am). In a hyperbaric oxygen therapy chamber, the air pressure is increased 2 to 3 times higher than normal air pressure. The general idea is that the increase in oxygen not just internally but also externally helps with increasing cell turnover, helps fight bacteria and also triggers the release of substances called growth factors and stem cells, which promote healing. This has resulted in his original wound (OG for the youngsters) has been deemed fully healed! It still requires some TLC (amatory magnanimous curing because I enjoy a good thesaurus perusing) and the other 2 wounds are making steady improvement as well. 

And finally, so many of you participated in the Volleyball Tournament last year, and we are happy to announce that we will have the second Will Power Volleyball Tournament, Bake Sale and Chinese Auction on August 10! Our next financial goals over the next 6 months is to find an aggressive in-patient rehab center and to continue to make our home more accessible to Billy. In addition, we have created a Trust that will serve as our foundation (turns out that unless you’re Michael J. Fox you can’t name a foundation after yourself). We have experienced so much generosity over the last year and a half and while Billy does need more help as he continues his healing journey, we also want to begin giving aid to other families impacted by ADEM and other neurological events. As we have seen and are still discovering, this disease and its recovery are full of surprises which require us to be constantly evolving, and whatever financial support that we can give to other families will go a long way. We will be posting more info in the coming weeks and months (yes, you will be subjected to more of my harangings). We hope to see you all there!

As always, thank you and we love you.

Bathroom Reveal

https://drive.google.com/file/d/1KRji_h6se_M0_fpeRghPTd56TeBfPdoY/view?usp=sharing