^{Support Registry Update}

One Month, Five Days and 50 Degrees

In support of
Ari Mordujovich

Last week we crossed the one-month mark in this strange new world with our son. As Ari continues with his inpatient treatment at Brooks, mundanities of daily living are being transformed into towering achievements of a new life. Complex routines are replacing what used to be simple and unthinking. For Ari, everyday life in some sense has slowed down as it is disassembled into novel component parts. Meanwhile, for the family, novel issues of every kind are rushing at us faster than we can keep up with. The phrase we hear and say a lot is “drinking out of a firehose.” High volume, high impact.

Another thing we hear a lot is, “you have the funniest son ever.” He cracks everyone up. That’s one thing, thankfully, that has not changed.

Ari has been making great progress in rehab over the last two weeks since our last update. By week two, he had improved his transfers to only requiring minimal assistance to place the board and to manage his legs; he could otherwise perform the rest of the transfer on his own, boosting his hips really well to make sure he doesn’t slide on the board. By week three, we witnessed him transfer from chair to bed without assistance for the first time. He had been hanging out with a new buddy who is at Brooks as an outpatient using their HAL robotic exoskeleton suit. Ari watched him transfer seamlessly from chair to couch and was inspired. A couple days later he burnt the bottom of his palms under his thumbs and almost fell off his chair a couple times while testing out the limits of his bulky rehab chair during an outdoor adventure around Brooks campus with his friend. Nobody who knows him is surprised.

His therapists have him doing all sorts of exercises to strengthen his upper body and work on his balance. He was able to do push-ups on a tall kneeling bench. He’s played basketball in his chair several more times. He used the E-stim muscle-stimulator on his abs to work on core muscle strengthening while doing sit ups. As a reminder, Ari’s T5 Level injury affects both his trunk and lower body.

Ari has been using an EZ stand to work on his tolerance to going upright and to get weight bearing through his legs. This will be very important to do on an ongoing basis. As of now, he has been able to get up to 50 degrees before orthostatic hypotension (decreased blood pressure) kicks in. He has also been able to push himself up on parallel bars using his upper body strength, which gives him some of that important upright time.

A major impediment to his therapy since his first week at Brooks has been a persistent major headache that comes on as soon as he goes upright and doesn’t stop until he’s supine again, and then only after a couple minutes laying down. After about ten days of discomfort and missed or interrupted therapy, and enough nudging from us, the doctors ordered a CT scan of his brain. And then another one of his spine. They have reached out to Neurosurgery at UF Shands for their opinion. The most likely culprit is a cerebrospinal fluid leak. The most effective remedy so far that has allowed him to keep up with therapy: caffeine pills. Whatever it takes.

Life has taken on some new dimensions for sure. We have set up semi-permanent camp between the fourth floor at Brooks and Helen’s House family housing across the street. We’ve built a well-oiled machine using the hospital’s insulated dome plates to transfer home cooked meals between Helen’s House communal kitchen and Ari’s room, because hospital food is still hospital food even here. The nurses and CNAs know where to go for fresh squeezed citrus, buttermilk pancakes or a sip of yerba mate in the morning.

And though every day comes with a nonstop stream of new information to absorb, new worries we didn’t know we had, new issues and frustrations, roadblocks to plow through and gatekeepers to question, we are not going it alone. So many are gathering alongside us to help, including everyone who is following and supporting us here. We are constantly wowed by the generosity of our community near and far. Dad’s employer, Koss Olinger, has provided crucial support throughout this ordeal from day one, giving opportunity for the intensive level of care and advocacy that Ari needs from his parents during what we will one day call “the early days.”

Family and friends have connected us to an amazing growing roster of co-advocates, peer mentors, and subject-matter experts. Though we had barely met her previously and only knew of her through Instagram and friends, the amazing Abby Zachritz (@advocacy.abby) was at Shands hospital meeting with us at the ICU lobby within a day of us reaching out. She has been involved since then, guiding on next steps, connecting us to tons of valuable resources, and even helping set up this support page.

We were connected to Alan Brown at the Christopher & Dana Reeve Foundation, who helped set us up with another ton of resources and a network of peer mentors. Another friend connected us to an Ironman champion and serial marathoner and triathlete who also was injured at age 17 some 30+ years ago and has the same level of injury as Ari. He has provided us with a masterclass on everything we never thought we needed to know about wheelchair specs, and is helping us navigate that whole process for Ari’s first chair to the most minute detail. And there are many, many details. There may be some hoops to jump and pushback involved so we are working through that. The right chair with the right fit is essential and can be a game changer for Ari post-rehab. It’s worth the effort. Meanwhile, Ari is about to receive a special gift from our new friend, who also happens to be the exact same size as Ari: his old racing chair that should fit Ari like a glove. Ari is super excited about this.

Every day, we are in touch with or making new connections with others who have already been where we are and who can see the future much more clearly than we can. This is a new planet. There are many hard things to come to terms with here. But we are not alone.

Ari's Family

Eddie Mordujovich
over 1 year ago

Browse Current Support Options

View Options

Comments

Abby Zachritz over 1 year ago

Wow, that was a great update. Thank you for keeping us informed. Keep kicking by Ari!

Jane over 1 year ago

I learned of Ari through a friend, and my heart is with you all. My former husband is a paraplegic--I met him after he'd been in a chair for 7 years--and we have the most wonderful sons and traveled all over the world. Ari's accident will change how he does things, and will create different challenges, but it doesn't diminish his opportunities or take away his ability to love and live boldly. Thinking of you all. Sending love. Jane

Suzanne Warren over 1 year ago

Love you guys so so much! Praying for yall and cheering Ari on!!!!

Denise Nail over 1 year ago

Thanks for your very informative and constant updates. We love you Ari!!

Amber Park over 1 year ago

Thinking of all of you and love to hear he’s not lost his sense of humor! Ari sounds like he is handling things better than any of us could! Sending love and hugs!!

Jerrydefrance over 1 year ago

This seems like remarkable progress, on a trail that stretches to the horizon. But Ari just remember you are never alone. Your family is amazing, and all The rest of us along to encourage and send even more love to you. You have the heavy lifting part of this arrangement, but your efforts roll pay huge dividends!

Noroffice2000 over 1 year ago

Thank you for managing to take the time to keep us all informed, we know your days are filled. Keep up the hard work Ari, stay strong. We love you

Regina Bailes over 1 year ago

Your words are so inspiring and what a witness to the world! In the midst of all this new planet you are living in, God is still sitting in His throne and in control. I’m so happy for all the amazing connections you have made, praying diligently and constantly have been part of my routine since the beginning. We love you guys! 💕

Dara Cohen over 1 year ago

Thank you for the update. Congratulations on the huge achievement of transferring without assistance and all the other progress Ari has made. Love the racing chair, the new friend, the basketball!! Praying for the orthostatic hypotension and other physical challenges to be overcome with continued success and recovery. Ari is a champion!!

Amber Guzinski over 1 year ago

I’m so glad this new planet comes with superhero’s. Thank you, Edwardo. Ari, keep up the fight with your flair of fun. Love you xo

Michele Gutierrez over 1 year ago

WOW! Indeed remarkable progress! Praying and sending you all love and light. Its an incredible blessing that you have each other to lean on for support. xoxoxx

Reddva over 1 year ago

Good Morning, Thank you for the update on Ari and your family. Love and Prayers.

Nitsirkyvad over 1 year ago

Thanks for the update - sending love and support and a heck yea to Ari! That's some amazing progress!

Alison Mathena over 1 year ago

Ari, your bravery and courage is an inspiration to us all. Much love and prayers your way and to your family.

silvia buschiazzo over 1 year ago

Thanks for this update!!! My hug and kisses for all of you!! So glad that Ari keeps his good humor and is rapidly progressing !!! Love, Silvia

Perla Buschiazzo over 1 year ago

Thank you Eddie for keeping us with these news!!!! Ari made a remarkable progress! Its incredible his sense of humour !!! Praying and sending you all love ,thoughts and strength.

Jannasays over 1 year ago

Every time I read these, I cry so hard, but not from sadness. I cry from positive, joyful inspiration. Of course, Ari has been amazing but really it seems your entire family and community have all risen to the call and the challenge. Incredible!!!!! 💕💕💕

Marc Woodstuff over 1 year ago

We are still cheering for you all!! I cannot even imagine the time-stoppage and slow-motion aspect your lives have taken on while still trying to be present for the hyper-speed lives of your other children and the rest of the world. Please call if you need anything. A talk, a laugh, a good cry, whatever.

H.macgowan7 over 1 year ago

One day at a time. Sometimes one minute at a time. Not just for Ari, but for your family. We're praying for you guys.

Amanda.moore over 1 year ago

There is so much here to celebrate, we are praying for continued improvement!

Tmardenusa over 1 year ago

Wonderful to hear about his progress. Thank you. God Speed.

Alebus over 1 year ago

Querida familia, Ari, Eddie, todos: les mando un abrazo grande desde Uruguay. The updates you share with us are so much appreciated, we are all supporting Ari from many parts of the world. It's so good to learn about all the progress Ari's been able to achieve along this new path!! So comforting to realize how family, friends, new friends and professionals nurture this network of love and care. No conozco a Ari personalmente, conoci a su hermana hace muy poquito, y tengo bellos recuerdos de mis primos con Eddie el mas "pequeño: :) : desde ese sentimiento de cercania, le mando a Ari un abrazo muy grande a la distancia!

Return to Support Registry