Tuesday, July 14, 2015

State of Kind - Florida: "Volleyball, Fireball, and Kindness"

When I first started State of Kind to help raise awareness for 22q11.2 Deletion Syndrome, I figured it was something I would be able to do in maybe a year, two years tops.  What I've found is that the combination of caring for a child with 22q, work, and life in general has made me have to re-evaluate the time frame in which I will pull this off (which I think is for the better).  Since my last update, however, Cohen has had many inchstones (what my wife and I call his milestones).  He no longer requires oxygen 24/7, he's crawling all around our house (and even attempting to stand on his own), and he knows so many sign language words, it's hard to keep count.  Cohen said "Mama" on Super Bowl Sunday, and "Dada" on Father's Day, so he has somewhat of a flair for the dramatic.  While he continues to be fed via a tube in his tummy, he is slowly starting to take things by mouth.  All in all, life, albeit hectic, is pretty darn good for our family.  Speaking of family, this past weekend, I was able to join my sister down in St. Petersburg, Florida, and while there, we decided to put together State of Kind - Florida!

Since last year, my sister has played in monthly beach volleyball tournaments with a group called the Tampa Bay Beach Bums.  They are a group of people who come together to have fun playing the game they love, hang out, and do philanthropy each and every month.  I asked my sister if they would be willing to partner for a State of Kind while I was down there, and unsurprisingly, they said "yes."  The next step was finding out who we would do the act of kindness for.  I did some research on area non-profits and found an incredible group called Alpha House of Tampa.  Alpha House's mission is to offer homeless pregnant women and mothers with young children safe housing and the tools they need to become self-sufficient and effective, responsible parents.  The goal for this State of Kind would be to hold a drive at the Bums volleyball tournament for items and gift cards that the mothers and children were in need of.  

Our day on the beach started at around 11AM, and it was apparent early on that this was going to be an uber successful day of fundraising (I brought a suitcase filled with items and gift cards donated by awesome people back home in Chicago as well).  I started out giving a speech about what I was doing and why to the hundred plus people in attendance, and told everyone about Cohen and 22q.  Within no time, the tables for collection items were filled, and the Beach Bums committed to donating all proceeds from their raffles to Alpha House.  There were numerous times throughout the day that people would ask about 22q, and I was excited at the opportunity to spread the word.  I've never been around a more welcoming group of people, and I was really excited to get to know all of the people that my sister has been raving about for so long.  I was happily able to meet Stacey from Alpha House when she collected the items (she also seemed like she might look to join the Beach Bums for a future tournament).  The only drawback to the weekend was that our team didn't advance out of the pool play stage of the tournament, which is alright because it gave us a little extra time to celebrate the success of the State of Kind with Coronas and Fireball.

Monday, June 8, 2015

Coming Soon!

It's been a loooooooooong time.  I have an explanation.  New States of Kind are coming soon!

Tuesday, August 5, 2014

State of Kind - Vermont: "The Adventures of Super Davin"

"The night is darkest just before the dawn, and I promise you, the dawn is coming." 
-The Dark Knight

When Cohen was in the hospital, and things kept seeming to get worse and worse, I kept thinking about this quote from The Dark Knight.  When he was hooked up to the ventilator in the medicated coma, I kept telling myself that this was as bad as it was going to be, and soon we would be looking back at this as a distant memory.  Well, almost 4 months since that scariest time of our lives, I can say that the quote above couldn't have been truer.  With each passing day since returning home in his Batman costume, I see my boy transforming before my very eyes in ways that I couldn't have imagined months ago.  His personality is starting to shine through (he is quite the flirt and joker), he is starting to pack on the pounds (we have to spend extra bath time cleaning out his fat rolls like he's a Shar Pei), and he has a non-stop smile that lights up every room he enters.  Recently, he had a sleep study done which will hopefully lead to a lowering of his oxygen intake and my wife has done a great job of getting him interested in feeding by mouth (like his sister Isla, he is a huge fan of avocados).  Physically, he is still a few months behind, but due to the efforts of my wife and Cohen's physical/occupational therapists (shout out Erin and Richelle!), he is starting to do a lot more. He will continue to grow, he will continue to get stronger, and he will continue to be an inspiration to my family and many others.  Because, like Batman is to Gotham, Cohen is the hero 22Q deserves and needs...along with his friend and fellow superhero, Davin.

In the fall of last year, Lindsey and I were still trying to wrap our heads around Cohen's 22Q deletion syndrome diagnosis.  We had done hours and hours of research on The Dempster Family Foundation website, prepared mentally for all of the different symptoms that could present themselves, and got medical journals from a friend of ours, but what we really needed was someone who has gone through a similar experience that we could relate to.  My wife joined many different groups on Facebook associated with 22Q /VCFS/DiGeorge in order to be a part of a community of people going through the same things.  At random, my wife reached out to a woman in one of those groups and asked if she might have some time to chat.  Thankfully, the woman, a single mother from Vermont named Kimberly, reached back out and quickly became Lindsey's go to resource for questions, concerns and for a shoulder to cry on.  Kimberly's son, Davin (or as he is known on the superhero circuit, Super Davin), was a fellow 22Q-T who had been going through his own journey (See Below) with the syndrome, so Kimberly seemed to have the answer to almost all of our questions.  Without Kimberly's help, who knows how ill prepared we would have been when Cohen was finally born.  Since Cohen's birth, Kimberly and Davin have been a source of inspiration and guidance for our family as we navigate our 22Q journey.  While Cohen was in the hospital, we became frustrated by the fact that the doctors didn't have any answers and didn't know where to turn.  Luckily, we had Kimberly there to give us ideas and questions to ask the doctors, and more often than not, she pointed us in exactly the right direction! Because of all of their help and the stress they helped take off of our chests, we wanted to be able to use the State of Kind platform to be able to thank them.

The demands (mental, financial, timewise, etc.) of a 22Q diagnosis are no easy things to navigate.  Between the doctor's appointments, hospital stays, and strict schedule/needs Cohen requires, we have had to make many changes to our lives to ensure that Cohen and Isla have the best lives possible.  I can only imagine how difficult it is for Kimberly and thankfully, her brother, Scott has been there to assist her, but again, I can't imagine how hectic life is for her.  We reached out to Scott to get an idea of some of the things that might make things easier for Kimberly and Davin.  We found out that Davin was a huge fan of NASCAR and race cars in general.  We also learned that one thing that Kimberly had always wanted but had been unable to get was professional photos done of her and Davin.  Finally, Scott told us that Davin has responded really well to certain iPad apps, but didn't have one of his own to utilize (and insurance wasn't keen on paying for one even though it helped).  At that point, we had enough information to become kindness superheroes, and we leapt into action!  First, I researched photographers around the Bennington, Vermont area and came across Carrie Ann Photography.  I sent Carrie an email inquiring about packages and pricing for a mother/son photo session.  I told her Kimberly and Davin's story and rather than responding with prices, she offered to do the session at NO CHARGE and give all of the images to Kimberly FOR FREE!  (Side note: Thank you so much Carrie for doing this. I know how much our own family photos mean to us, so I know what they will mean to Kimberly).  Next, I reached out to my mom because her company does some work with NASCAR and asked if she had any connections.  She hopped on the phones immediately, and got in touch with the team for NASCAR driver Ricky Stenhouse Jr.  She explained Davin's story, and Ricky sent over an autographed model of his car for Davin to have.  Finally, back in December, during an appearance on Windy City Live, I was surprised with a gift card to use on future acts of kindness.  It had been burning a hole in my pocket, and now the opportunity had presented itself for me to use it.  We would take the gift card to purchase other gift cards for Kimberly to use towards an iPad for Davin, as well as some additional funds to go towards everyday necessities, food, etc.  For his help, we also used the card to get a nice dinner at a local restaurant for her brother.  My wife reached out to Kimberly to set up a virtual playdate on Skype between Davin and Cohen as a way to present everything.  I spent the first couple of minutes pacing back and forth, nervously excited to reveal State of Kind - Vermont.  When I did, Kimberly was initially speechless, but then couldn't have been more thankful.  Kimberly, we are forever indebted to you for helping us through some of the toughest times of our lives.  You and Super Davin will continue to inspire us and many others who learn about your story!

Speaking of that story, here it is in Kimberly's own words:

"My amazing little guy has had many ups and downs during his short amount of time that he has been in this world. You could say it has been similar to riding a never ending roller coaster. As such, I’m not quite certain where to begin and where to end. So I’ll start by telling you that I have an amazing miracle who is my own personal super hero. He inspires me every single day and I am so proud of my special little man who radiates love and inspiration. He has touched more hearts and lives in his 4 years than many people do in a lifetime.  

After carrying Davin to full term, he became distressed during labor and was taken via C-section after 23 hours of hard labor.  It was three hours before I was able to even see or touch him, much less hold him in my arms, but was it worth it when I did.  He was so beautiful and I was so completely in love. However, the best day of my life quickly turned out to be one of the scariest.  Shortly after birth, Davin was put on oxygen and within 48 hours, he was transferred to another hospital that was more equipped to deal with his potentially serious issues. I had to remain in the hospital where he was born by myself because of my own complications during his birth. Shortly after, I learned how severe his issues were.  I was told over the phone at 5:30AM, alone in my room, that there was in fact something severely wrong with Davin's heart and he would require open heart surgery.  5 hours later I received yet another call telling me they were unsure if he would even be a candidate. He underwent a myriad of tests. It was a whirlwind when I was told of his multiple severe heart defects, which include TOF (Tetralogy of Fallot), severe pulmonary atresia, a VSD (ventricular septal defect), an ASD (atrial septal defect), MAPCAs (major aortopulmonary collateral arteries), right aortic arch, and a severely enlarged heart. The TOF alone was 1 in 10,000 and with everything else, he was one of the most difficult cases they had seen.  He was then also diagnosed with 22Q Deletion/DiGeorge Syndrome.  Davin is on the more severe end of the 22Q spectrum. So far (more and more issues can and have presented with time) it has been severe cardiac defects, tracheobronchomalacia, immune system issues that leave him very susceptible to becoming sick and it is harder for him to fight off illness, vaccinations don't always take or give him the amount of protection they should, pulmonary dysfunction, feeding difficulties, multiple GI issues, endocrine issues that make it necessary for regular blood draws to keep his levels balanced with medication to prevent seizures and deal with deficiencies affecting his bones among other things, ortho issues- he has osteopenia, hypotonia, pronated ankles, leg length discrepancy, bone density issues and pressure fractures in his lower back, eyes he has a stigmatism in both eyes, and exetropia. that mostly affects him when he is sick or tired.  He has survived 4 major heart surgeries, of which 3 were open heart and one was a thoracotomy. The thoracotomy saved the lower lobe of one of his lungs. Davin also has had 9 cardiac catheterization surgeries, which will always be a part of his life. He will need at least one more open heart surgery when he gets a bit older, or more.  

The first time Davin crawled was when he was 2 1/2 and began to walk a bit on his own at exactly 3 years and 2 months of age. He still doesn't speak and I am hopeful that he will someday, even though with his syndrome it is not guaranteed. He has been taking some food by mouth and has begun swallowing liquids. He is developmentally delayed in many ways due to being diagnosed with autism. Communication is a big issue.   Physical and developmental delays have honestly been a huge struggle and still are though they are improving.  He has spent almost a year and a half of his life in the hospital. He has been in and out of heart failure at times. He was also in an induced coma for 33 days after almost dying in front of my eyes from lung issues which doctors still can't fully understand and cannot explain how he pulled through.  Davin will most likely have learning disabilities, he does have some sensory issues and there is a higher chance of the development of mental issues including depression, ADHD, bipolar disorder and schizophrenia. Like Davin, many children with his disorder fall on some sort of spectrum of autism as well. Davin can never be "cured" of his DiGeorge syndrome. We will always live with it and we will try to keep it in balance. His heart will never be all better but it will be better than it was and god willing, it will now sustain him with a normal life span.  Keeping him healthy is a fine balancing act but we have been doing it.  He makes many trips to Boston to see his many many specialists and they are doing a great job of keeping him stabilized. He doesn't have the nick name Super Davin for nothing!!! 

I tell people don't feel sorry for him; be proud of him and his accomplishments!! Let him inspire you as he inspires me everyday. When you look at this amazing resilient happy little boy you would never imagine the struggles and battles he has gone and still goes through.  He has a zest for life and is one of the happiest people I have ever known. He sure puts the meaning of appreciation of life into perspective. And no, if I had known then what I know now before I had him I would not change a thing. He is the best thing that has ever happened to me and the world is a better place for having him in it.

Being able to help others that are going through similar situations is also something that helps me to deal with all we've been through.  It gives the struggle a sort of purpose, a reason, a positive.  Knowing that Davin's struggles and all we've battled through can help ease those of another families is comforting. To be able to give support and help guide another family through this journey brings a sort of peace and happiness to my heart.  I feel blessed to have met the many families I would have never known if not for our journey with 22Q and the Garcia's are one of those at the top of the list."