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Please keep praying for Archer to recover; we are storming heaven! I thought my chest would burst in gratitude for each of them, that gesture, that love, that solidarity. I felt assured and confident that we would figure it out. And really, rehab is the priority of the injured athlete. But even if Archer had not been complicated, he would still have wanted both, to devote time to rehab and to his education. But the truth of it all is that Archer was just very complicated. And all of you, with your prayers created the energy field for what is happening now. We knew it was an unusual surgery, that is, to actually remove a pace maker, but we knew it was getting more and more risky the longer we waited. Archer has been building stamina for a year now to be able to get on to the GEO and stay and remain upright without any heart or Blood Pressure or Autonomic Dysreflexia issues. I just love to watch it move Archer’s feet and legs. There is a mirror in the GEO room in which he can watch himself. For every step you take today or tomorrow, or really just a mindful moment of one step, feel the love and freedom in that step and what it means. Well, there he was crossing the threshold of the screening suite. Man o man, can he move quickly with that stylus on an ipad and an iphone.This picture was taken outside of The Food Market in Hampden, Baltimore on Archer’s birthday in July. I couldn’t help but feel joy and gratitude in every cell of my being as I watched Archer roll across the Mc Donogh School stage this past Monday. Archer maneuvered his powerchair using the T-bar in which his left hand rests, powered also by his left shoulder pushing his hand as if an extension. I quickly learned that none of these facilities dealing with acute rehab is equipped to teach or provide teaching while in-patient. His recovery was complicated, and honestly, his intellectual ability was complicated as it was near impossible to find teacher matches for him if the goal was to graduate a/k/a staying on course with the classes he would have otherwise been taking which were all AP’s and high level math. But I had no idea it was anything different than any other catastrophic injury like quadriplegia. So, last June, a wonderful surgeon at Johns Hopkins successfully removed it and all 42 feet of leads around Archer’s ventricles. I am sure that mirror neurons are sending messages to his brain, Remember walking? A machine like the GEO simulating what his body knows how to do already, maybe it will not only strengthen, but maybe it will wake it up. He stays up until 1am on many if not most school nights which concerns us on one hand and which we also admire on the other as he is driven to move forward and learn and do well in life despite the injury.
But it’s a lot, like finding at UPenn Medicine the 18-22 medical specialists who can be consulted when needed.
For any of you who might have special prayer requests, please send them to me. Being website and click Interested in Learning More. From the time of tryouts to now he too has grown more and more and he is now, as an 8 grader, 6’ 1” feet tall! He said it was a like a long sports tournament but with a lot more diversity and that it was really fun. So, it’s as if we need a somebody in close proximity but who is invisible until Archer needs him or her. We are actively seeking night nurses, two full time nurses who can care for Archer.
He will forever be shiny on the inside as a result. He never once talked about it until all the performances, and then he wouldn’t stop. He looks back and talked about the rehearsals and the fun they had and what it feels like to have everything so nothing and then have everything come together. Interactions with others and college friendships are as important as the academics and quality of teaching it seems to us.
He delivered it beautifully, but only after giving us all a scare by almost tipping over in his 500 lb wheelchair when he hit a divet on the grassy slope as he rolled down in staggered procession with his classmates. It also didn’t matter that it took a few extra moments for this ritual with a new twist to be completed. I could feel the wet tears rolling down my cheeks as we all clapped at the end and felt so proud. I will tell you more about all that background later. On that subject of his being complicated, do you know what else just happened? Last week The Christopher Reeve Foundation contacted us and if they could write a letter of recommendation on Archer’s behalf when they heard he was making application for a scholarship from the Swim with Mike Foundation (wonderful group at Unit of Southern California) to help pay for college. It was extremely generous of them to Can you believe that. And I have begun to counsel those who have come and reached out and it really is a wealth of how to’s I guess you could say, of course unique to each injury but many across the board learnings I hope can help others. Nonetheless, their statement was sobering and included and reminded me that Archer had had 9 surgeries in 30 days, endured medical errors that were costly to his recovery such as placing blood pressure medicine in the saline drip bag, suffered 3 heart attacks, one resulting in 6 male medical workers having to beat his chest and back as he flat-lined for 6 minutes, required a subsequent pace maker implanted when he was only 17 years old, survived collapsed lungs on multiple occasions, bore a grueling searing pleuredesis procedure, endured the excruciating pain of a body trying to regulate itself while his entire body had to be rotated up onto his side every few hours 24-7 to drain his lungs and prevent pneumonia from settling into his lungs, endure three large chest tubes (inserted directly into the lungs and attached to containers we could see bedside) to drain fluid, experience his hands and feet curling in muscle atrophy because of the delay in physical therapy, live through his body being iced and de-iced in response to wild swings of high blood pressure, not lose hope at an alarmingly chronic low heart beat, endure constant deep lung suctioning (inserting long suction tubing through the hole in his neck snaking down into his tissue) 24-7 for six months, put up with machines needed for other machines when the use of an inexufflator was used to support the ventilator machine which was to used to support Archer’s breathing, but his body was not able to breathe on its own even with the ventilator support and additional boost because of the extensive nerve damage not providing enough enervation for his diaphragm, endured prolonged use of the ventilator and chronic lung desaturations and arrests in breathing requiring bursts of oxygen and other lung devices, and kept faith even when blebs appeared in his lung tissue and the machines were discontinued. We’ve all gotten better as his programs and now it’s a am weight shift and he can sleep until am. But what it means to go to college is…well, Archer wants to be like any one else who had always planned to go away for college. We are feeling very good about his choice and are searching and networking to those in places of power and influence there. Financial Aid let us know earlier that Archer is the first quadriplegic who has no function below his biceps to attend Penn, and they thought he might be the first with these limitations to attend an Ivy League.
He pitched forward and his body landed on the TBar that he maneuvers to move the chair, causing the chair to race forward. The board of trustees also awarded him the Character and Influence award. The auditorium packed with students and Mc Donogh parents was hush quiet while Archer stopped the powerchair and then manipulated the T-bar to move his big 500 lb chair on wheels to Mr. The achievement and all it has taken to catch up, stay current and excel draped gently and lovingly around his neck. It is interesting and I tell you, it was like a suspense film week to week figuring it out. They sent a copy of the recommendation letter today. I was blown away when in the letter they said that of all the quadriplegics they have counseled and assisted, they have never seen a person with injuries as complicated as Archer’s and that he is the first they have written a recommendation for. But they stated that they had never known of a quadriplegic injury as medically complicated as Archer’s and that is really what gave me pause. It’s not to say look at him, it’s worse than others. It’s more to say, It was that bad, see what is possible. He wants to live in a dorm and be a regular student. We knew absolutely no one at UPenn before Archer’s acceptance, I know feel I have some real champions and open minded people who are willing to help us chart a good solid course of care for his needs. That just told me that we have a lot of educating to do, so that is what I began.