I can’t believe we haven’t shared an update since August! Time certainly has flown by these last several months… Today is a special day, because it marks one year from Joey’s first transplant! And what a year it has been!

Joey, and all we have going on, has kept me so busy, it didn’t hit me until recently how full of life our house is now. For the first half of last year, Joey’s room was empty and unused; frozen in time. The only reason we went in there at all was because we used his crib to hold the blankets and stuffed animals we’d wash and rotate bringing to the hospital. I hated going in there, even to quickly grab those things… It always made me so sad. We were gone so much we barely used anything in our house at all.

I look around now and see toys scattered everywhere, piles of stuff in every room, dishes and laundry constantly needing to be washed and put away… Frankly, it is a little messy. Which normally bothers me, but I feel so grateful for now. Grateful we have been home for seven months (longer than we were in the hospital), that life feels somewhat normal again, and most importantly, that Joey is doing so well! Aside from a minor rejection scare in September, which luckily turned out to be nothing, he has been doing GREAT!

Since being home, we have celebrated so many different milestones and events. We were fortunate enough to celebrate Joey’s first birthday with close family and friends, we have gone on our first family vacation to the beach, we were able to dress Joey up in his first Halloween costume(s) and take him out in the snow for the first time, and Chris and I were even able to celebrate our friends getting married!

I have been reflecting a lot on how this journey kicked off a little over a year ago, and everything our family has been through. But mostly, how lucky we are. I have seen Joey on his deathbed, with tubes and wires all in/over him. But I look at him now, and you’d never know what he’s been through. How close we were to losing him, multiple times. He is crawling, pulling himself up on every piece of furniture we have, cruising the couches, beds, and tables. He is just getting into trouble every other minute, and keeping me so busy. He is pointing at everything and starting to say a handful of words (but still yells quite a bit to try to get what he wants). He loves to wave and say “bye-bye” to everyone and everything he parts from. He gives the best hugs and snuggles, and has the best smile with a mouth full of tiny teeth. He is beautiful and healthy. He is strong and wild. He is so happy and has the best personality. And I’m sure we are a bit biased, but we think he is the absolute cutest thing ever.

Since Thanksgiving, I have been really in my feels about the families who lost their loved ones last year, the ones who gave Joey a second and third chance at life. Don’t get me wrong, I think about those families every single day, but with all of the holidays approaching, I found them constantly on my mind. So, I finally sat down and wrote each family a letter thanking them, with the hopes they’d receive them (if they wanted to) by the holidays. As I started writing, I realized why I had been putting it off for so long- it was so difficult to put my feelings into words… How do you properly thank someone for such a generous gift, a gift that saved your child’s life? While they are grieving the loss of their own? They were, by far, the most difficult things I have ever had to write.

At the end of our letters, we made commitments to the families to celebrate the life of their loved ones every year on Joey’s transplant anniversary (we will be celebrating both transplant anniversaries, every year), and to continue to find ways to honor their loved ones. Today, we will be having cake and a small celebration at home. But we look forward to the day Joey is a bit older and we can talk about why this day is so important, and talk about his donor. We will also be donating to COTA and Donate Life America in memory of Joey’s first donor. I mention these commitments here, because I’d love to hear any ideas you may have for celebrating and honoring Joey’s donors going forward! No idea is too big or too small. Please feel free to text/call/email/comment with your thoughts 🙂

In terms of an actual update, we don’t have anything too crazy to share! Joey is doing great, and is quickly catching up to where he should be. It is fascinating, and fills me with immense pride, to see how quickly he is growing and learning. Once he got crawling, it feels like he has exploded in terms of catching up from a cognitive and motor perspective. I swear he is learning something new every day. Every week when his physical and occupational therapists see him, they are blown away by how much he has progressed. In terms of feeding, Joey has been eating solids so well by mouth that we were able to fully transition him off formula in October. We were so thrilled by his progress eating, and that we were able to make this change as soon as we did. Drinking, on the other hand, is still an ongoing challenge. Because of the damage to his kidneys, Joey has hydration requirements and is still quite a bit off from meeting them without the help of his tube. Yesterday, he finally underwent the procedure to exchange his J-tube (in his intestines) to his G-tube (in his stomach). With a J-tube, we could only give him water continuously, at a slow rate. Now, with a G-tube, we can give him higher volumes of water over shorter periods of time (think, the difference of drinking a glass of water over four hours vs. one). This will help get his body used to tolerating food and larger volumes of liquid in his stomach together. And, it can allow us to go longer without giving him water in the tube, which we hope will initiate some thirst. We will be focusing now on finding what rates and volumes work for him, and continue working to wean him off of the tube altogether. But until he can hydrate properly, and take all meds, all by mouth, he’ll have the tube. We are working to get an appointment with nephrology soon, to check in on the status of his kidney function and see if/what adjustments we can make to help optimize their health going forward.

But for now, and hopefully for the foreseeable future, Joe will be steadily recovering, growing, and learning!

As we close the chapter on this first year, I’d like to wrap by thanking everyone who has helped us get here today, and for a favor.

To our family, friends (old and new), and strangers- thank you for keeping us in your thoughts and prayers, for sending/delivering us food and gifts, for your generous donations to Joey’s COTA campaign, for checking in on us. For volunteering- without reservation- to be Joey’s donor, and for those who have become donors since. For continuing to include us in your lives and for accommodating/understanding our current lifestyle restrictions. For opening wounds of your own to talk to us about your journeys. For carrying the weight of our fears, stress, and sadness, and for sharing in the victories and progress.

To the nurses- thank you for all of the blood, sweat, and tears you put into your work. For stretching yourselves so thin (even though you shouldn’t have to). For your composure in the face of chaos. For the love you freely give to our family and all the others. For taking such great care of us in, and out, of the hospital. I hope that when we visit and you see how well Joey is doing, you see the result of your hard work and dedication to him, and to your other patients. I hope when you see his smile, you know it is, in large part, due to all of the exceptional care you provide, and continue to provide. You are the real MVPs, every day.

To the all of the medical staff- nurses, doctors, surgeons, therapists, etc.- thank you for saving our son, and for getting him strong again. For leaving no stone unturned. For letting us be so heavily involved in rounds, discussions, and decisions of his care. For answering our gagillion questions, for imparting a small part of your vast wisdom. For making us laugh, for letting us into your lives, and becoming such a big part of ours. 

And to the donor families- thank you for the most generous, precious gift of all. Your children will continue to live on in Joey and all of the others they saved.

I know everyone has given us so much already, and I am eternally grateful for all of it. And I would not ask this of you if I didn’t feel it was important. But in the spirit of honoring Joey, and all those who have/will walk this road, I’d ask you to please consider registering as an organ donor. If you’ve been following along and sharing in Joey’s journey, you know the impact this can have on a person and their family. If you’d like to learn more, check out Donate Life America. If this commitment feels too big, perhaps you could instead consider becoming a blood, platelet, or plasma donor (check out American Red Cross or a local hospital). These blood products are constantly needed for transplant patients. And the next time you are at McDonald’s, please consider rounding up or donating to the Ronald McDonald House. We were fortunate enough to live close by to the hospital, but this is not a reality for most families. Some of which are at the hospitals for months, or more. Thank you so much for your consideration!

All our love,

The Moschellas