Archer: Dystrophic
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June 26, 2021 --
Wow, what a very unique last year and a half it has been for all of us! With the pandemic, so much of the "normal" routines that so many had were drastically shifted, and those shifts were definitely not lost on our family, particularly with the daily challenges that are presented on Archer's path through the EB gauntlet. The isolation and seclusion became even more prominent, and with the world grinding to a halt socially through physical interaction, it created even more of a bubble type of environment during such a crucial time for Archer and his physical care and mental development. With accessibility for his scheduled care very limited, travel restrictions and great caution being needed in order to do our part to help the cause and protect Archer and our family the best we could - it's been quite the added layer of perseverance and patience needed to stay the course the best we can in the fight against EB. But there is a beauty that has emerged through the despair, one where we are fully seeing Archer excel cognitively, grow physically and really take charge of his understanding of himself and where he fits within his own unique EB puzzle. Even with the pandemic struggle, there was a blessing in the situation, as it did allow each of us to be at home with Archer as a family more during such an important period of growth and development for him. While it is so exciting to see his growth physically, it also comes with the caveat of realizing that with his increased activity and maturation, there are so many more parts of his skin and body that become so much more deeply affected. To see the boundless potential and bright eyed passion be captured within a body so affected and limited with pain and fragility is one of the hardest challenges of all. Archer is a man on the move over the last year, with his legs always motoring him around even with his feet being one of his most highly affected areas. He is a true homage to the Walt Whitman quote adaptation of "be curious...not judgemental" and even though he may be a bit shy at times, you can always find him out and about going through walks in the neighborhood, swinging on his swing set, or playing a good game of "sink or float" in the backyard. He has begun to enjoy his interaction with water and bath time much more as he's grown up, and is very inquisitive to understand why things work the way they do around us each day. Archer still studies cars, trucks, planes and everything that goes, but has also really grown into a very big Super Mario Brothers fan with his brother Anderson over the last 15 months. Also a young man after his dad's heart, Archer loves to watch soccer games on TV and play soccer with his dad and brother - he is one of the lucky ones to be a natural lefty :) - and is a true fan of the University of Michigan with so much of young time being spent there for his care. Music, though, is still one of Archer's favorite muses, always enjoying a good song and a great drum beat - as he loves listening to the Killers, Motley Crue, AC/DC, The Who, Queen, Justin Timberlake and Footloose as favorites. Writing digitally has also become very fun for Archer, which is particularly exciting for us due the constriction and fusion from the scarring on his hands and his lack of full function with them. While it has been in some ways a "quiet" year for us in finding our path with Archer, his specialty care and what is available to him in regards to how we can approach RDEB clinical trials, transplant, and gene therapy studies - we are scheduled to return to University of Minnesota Masonic Children's Hospital for consultation and clinic in July and are also examining every plausible option to find any sort of small reliefs for him - our team of doctors at University of Michigan Mott's Children's hospital have been outstanding for Archer. He had two throat dilations over the past 15 months due to the narrowing of his throat and esophageal tract from sloughing and scarring in those areas. With all that transpires in the constant conflict of living with EB, it can be so naturally easy to be overwhelmed and feel defeated every day, and time teeters between eternity and the dash of seconds, minutes, hours and days. But in these blinks of time, no matter how hard it can be - Archer lives and breathes with every inch of his being. He embodies persistence with bold valor and is brimming with impact - and that is so, so much more of a gift to our family than EB could ever be a burden. Perspective is everywhere in life, and we are fortunate to have our perspective shaped by the gratitude of being able to live in and be guided through this challenge alongside Archer. - Kirk and Nicki, Archer's Parents |
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January 17, 2020 --
While enduring something we can't really imagine, Archer is, for all intents and purposes, a character filled and a happy 2-year-old boy! He has got some serious sass, a boatload of confidence, and a spirit that is positively contagious. Archer loves being around people, has the best greeting with the new smiles he's learned, and loves the fall season more than any other. He enjoys sitting outside during a nice fall breeze and watching the trees bend above him, all while letting us know exactly when a car goes by. Music is his go to, as it truly can "soothe the savage beast." He dances as much as he can, and lights up when he gets to hear his songs. Some of his favorites are "Hail to the Victors" (University of Michigan fight song), "All These Things that I've Done" by The Killers, "Footloose" by Kenny Loggins, and "Radio Gaga" by Queen - you can see his dad in him. Archer loves the Disney Pixar catalog - in particular the Cars franchise, Up, Moana, Sing and Toy Story movies. He has been working hard to try and develop his words, and is particularly stingy in saying "dad". So, we are on a first name basis, as he calls me Kirk. Archer is very affected in his mouth, tongue and throat so he is a bit behind in the speech development. He has perfected the art of waving "hi" and "bye," understands how to give high fives, fist bumps, and pounds, and, oddly enough, loves to organize! He's developed a sassy "no," and is a boy who definitely knows what he wants! He has done a great job fighting through his very affected feet. He is motoring around as much as he can, even with so much bandaging affecting his sense of touch and grip. We were able to find a pair of shoes after so much trial and error. He always wants to put them on his feet now! He officially took his first two unaided steps a couple of months ago. His mom and I were so proud, but brought back to reality immediately as he fell and caught himself with his hands, which blistered and split open...life gives and it takes away, right? We will be heading back to the University of Minnesota in March for our clinic, as well as to take the next steps in the bone marrow transplant process. However, we are waiting for Archer to develop his personality, full motor skills, and more speech before going down such an intensive path. All in all, Archer is exactly who he is meant to be, good and bad, and our family couldn't be any more thankful to have him just as he is. He is a 2-year-old boy conquering the world one small and cautious step at a time, and he is the ultimate teacher in our "classroom." -Kirk and Nicki, Archer's Parents |
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