Shoes accommodating afo braces
After all, Archer needs help 24-7 and during the day, opening doors, holding doors, taking his hoodies on and off, charging his phone and ipad, putting food on a plate or tray, giving his credit card or meal plan card to a cashier, being fed, having his Camel back water pack refilled, emptying his cath bag, getting the hair out of his face if windblown, putting his foot back on the foot plates of his chair if one falls off the plate, letting him know if there are people behind him when he turns in his chair, etc.
Like figuring out the location of the dorm room where and what and how big and accessibility given that all doors are card swiped, and figuring out tuition and cost of nursing care and what the days should be like.
We are grateful for the outpouring of support we have received. No hardware in the body other than the rods in the neck. The only thing that might give us trouble is they are looking for a C5 injury. We would plan to go for the surgery as soon as Archer graduates in June. If selected, it would mean the potential for him to regain his triceps, so he would have the muscle in the back of his arm to move his elbow, which would make Archer very very happy. And, it’s as if a door opened that we hadn’t anticipated at least at this moment. So many people from around the world have been healed, Christians and non-Christians. There is a sense of self in unity with God and with God through others. And a great deal of laughter and conversation and quiet prayer. I smiled over the phone lines, Oh you know all the usual stuff that prevented Archer from going. And also being in close proximity to the School of Engineering was very important. I took him after a snowstorm in March and there were a few streets that were difficult to cross given UPenn are in the middle of Philadelphia. We are in the beginning of seeing the fruits of a beginning collaboration at UPenn.
Click Here for more info about how the donations are processed to help Archer. But you’ve got to get your son the hell out of there. She confirmed what I felt, what I knew but did not know. Archer as you know is very “high injury” as they say, meaning high on the C spine, a/k/a not good, as a C2-C5 burst, but technically he is a C5 as that is where they placed his rods after they reconstructed his neck from the donor (thank you again, dear donor, you donated your hip bone and Archer is the beneficiary). It could also mean a restoration of the sensation in his arms below the elbow to his wrists, which could mean he might be able to grasp items between his two wrists because he could feel them rather than just meet such items now with stiff extension arms and droopy hands. Bruno Lanteri, please intercede for us as we ask for mercy. So, you might be assuming that Archer is going with me. Well, that woman came in with her son like a drill sergeant. We didn’t want to be demanding nor did I want a situation where we were adding things. We really did explore a number of dorms, but either facilities or disabilities had concerns or I had concerns. The curb cuts were still icy in some places but the most typical scenario was that the snow for walkers had been plowed and dumped in the curb cut, the only place someone in a wheelchair can go to get up onto a sidewalk. Can you believe it, already well into a new year and half way into year two for us on this journey with Archer and his quadriplegia. Last fall, Archer was admitted Early Decision into the School of Engineering at the University of Pennsylvania as part of the class of 2021. Stepping back to look at the big picture, it’s a big deal that he is even graduating from high school on time.
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.
If he passes, it’s on to the third screening where we will take him to San Diego. If that is successful still showing he is a good match for the experiment….well, then the procedure needs to happen within 30 days and we need for it to happen as soon as possible to fulfill the time afterwards given that Archer is to start UPenn the end of August. One mess up or one day of a caregiver who is not thorough and not caring could spell real trouble for Archer. So, we will continue to work on the system and safety net and emergency plans so we can exit and Archer can do his thing. Last Thursday we finally nailed down in what dorm he will be placed and that he will have a double with room for a caregiver all night.
But it’s a lot, like finding at UPenn Medicine the 18-22 medical specialists who can be consulted when needed.
After working the lunch rush in the kitchen as the cook at the Beach Club of Cape May, Archer went down to jump in the ocean and cool off before returning to clean up and get ready for the next day. Luckily, Archer was surrounded by capable and caring lifeguards and friends, and he was quickly taken to Atlanticare Regional Medical Center in Atlantic City, NJ. And as for Archer, well, it’s an inspiring aspect of Archer I must say, his inner drive. I really never had a chance to write the education chapter, as it was always happening but there was just so much more happening medically. And then everything changed after week two in the ICU, and they told us we needed to find a long-term acute care facility, as Archer would never breathe or walk or move on his own. In the insurance scramble and the chaos, I had received a call from a stranger, now I see her as an angel, affiliated with an organization that had been following these very blogs. That led to beginning to look and consider other out of state alternatives. You know the rest of the story of the scramble of calls to the Chief doctor there at the Shepherd Center and the flight and the Blue Angels pilots and the crazy delay and well…we were on a flight to Shepherd in about 48 or so hours. Delight in the use, the ease, how often you need them all day long. Breathe in the goodness of your own use of arms and wrists. But back then it was also Archer’s not being able to tolerate being hand lifted out of his chair without great pain. And it’s not that it was every hostile or closed, it was just unusual for them to be collaborating in this way they said. And because Archer’s hands have no sensation nor do they have nerve endings to help move them, it’s nearly impossible to get gloves on him, so his hands can get very cold, and he doesn’t even know it. Well, the crazy thing about quadriplegia is that the brain doesn’t register the discomfort, and that is when Autonomic Dysreflexia sets in, so…. For those of you who might be thinking mittens, we tried them too, as they were definitely easier to thread on, but he was not able to maneuver the chair and the T-bar since he could not tell whether he was on the bar or not through the thickness of the knit. It just takes time and a lot of follow up and educating about a situation. By the way, happy late Passover, and late Easter and Happy Spring! We create energy fields for healing and hope and truth of what is possible. And I will take your prayer with me if you would like to Lourdes. Bruno said, We can never hope too much; the one who hopes for everything, obtains everything. He surprised us with his decision to apply Early Decision as he is interested, at least for now, in a specific program that is not offered many places: a dual degree in Engineering and Fine Arts/Film/Animation/Design.