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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. Oh while I’m playing a little catch-up and we’re into Broadway, yes, Archer and Billy did go to see Stephen Colbert on his show a few weeks ago. Like figuring out PT and OT when the facility is a few miles away.
But it’s a lot, like finding at UPenn Medicine the 18-22 medical specialists who can be consulted when needed.
He also knows one of Archer’s favorite artists Shep Fairy which was realized when Archer spied one of his posters in the back room. If I can help pave the way, he can do all the rest.
Basically being his hands and his eyes when he can’t turn his body to see.
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.
The two day assessment will be later this month and include MRI, CT, physical assessments and such. But already we have found obstacles such as the cost is higher for a nurse in PA than in MD, and HHA’s or CNA’s in PA are not licensed to do certain activities and bowel programs are one. We have Archer’s body well cared for now and we hope to keep that trend going.
I will care for him with his mother as if he were my own son. If your prayer request is confidential, just write Confidential Prayer Request in the Subject line and I will copy it but not read it. Dutch said he wishes he were going with me and that so touched my heart. I went to every single showing, all 5, and sat in the front rows every time. We took out an ad in the school play program and said, Go, Onion Boy! Hopefully the seven months it took us to find good care at home will be shortened as we have learned too.
Please use that button at the top of this page if you want to make an online donation. We are waiting to see if he will pass the second screening as they review the medical records I had sent mid week. We may need help with frequent flier miles and so forth. If we have to move to San Diego for the summer, or go back and forth, we will. Please please pray that he is selected as the next human subject. It’s a crazy thing because I leave this week to go on a trip to Lourdes, France. No one in power much believed her but the peoples did one by one. The messages were to pray, to fast and to process in numbers to the place of holiness for healing. His mother and I will have enough experience to train others there. We angled for the two newest dorms where the technology is new and the possibilities thus expand for Archer to work with an UPenn physician who has suggested that they work together to figure out some new things and he told Archer that he might graduate with a couple patents. But a dorm that has Freshmen in it, lots, was key to us too. Being close to the Engineering school will limit his not having to miss classes related to rain and snow.
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.
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.
Archer loves to cook and bake, so the evening was extra special! I watched him lift his right arm and extend his hand, always wrapped carefully in an arm and wrist splint so it’s not floppy and so he can extend it, to shake hands with his School Headmaster. A simple gesture really, but one that takes great effort for Archer as he still has no feeling, no sensation in his arms or his hands. Yes, there was a certain awkwardness, as it was a bit clumsy given that Archer has no means of accepting an award in the usual way, no ability to grasp or hold or even know if an object is touching his body unless he can see it and know from experience before 8-5-15 it’s weight or texture since his brain does not register any signals about any sensations of the body from the shoulders on down as a result of the severance of his spinal cord, but it didn’t matter. He stopped his chair in front of his headmaster, and Mr. It’s surprising how few teachers there are who can teach those subjects, and they certainly are not in the home and hospital pool by and large. I don’t think it would be unusual for many of you though if it had been your son or daughter. They had called last week for an interview with Archer. They noted how Archer had not sustained just a fractured C5 neck which required delicate neck stabilization surgery but a shattered C2-C5 neck which required a complete reconstruction of the bone before it could then be stabilized with pins. We had said then, Archer, we need to get everything we can out of your body to be prepared for what might come your way in future medical surgeries and advances. I’ve felt that way too about some surgeries related to his bowel and urethra too that might be worthwhile but could change the internal workings in such a way that IF he walks someday, might interfere. Oh, I think I’ll send you a little clip of one of our more recent PT sessions. I learned from my eye healer that dead cells in my macula can be awakened. Here’s another picture of where I was waking up the cones of my non-dominant eye, the one with the most macular degeneration. Because his nightly and morning routines each take about 90 minutes now that we have things smoothly running and know what his body needs and how to care for him, it means he is going to bed very late and we need to awaken him early in the morning again.
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