It’s been awhile…

It’s been awhile since my last update on Ryley. Not that I haven’t wanted to, it’s just been hard to find words to explain the ups and downs of living with a spinal cord injury (SCI). The feelings of great sadness and supreme joy that pass amongst our family in any brief moment of time. The unwavering 24/7 care that Kim provides to our boy is intense and exhausting. If the Shepherd Center had an honorary nursing degree, Kim would be top of the class. The preparation for his return home is both exhilarating and scary. Ryley WANTS to come home…the endless days in the hospital are wearing him down, yet Shepherd is the BEST place for him to be. He has made SO many strides here. When I look back at the day he arrived on August 10th to today, the progress he has made is amazing! He now has good arm control on both sides and even some wrist movement on his right side. His occupational therapy team has been working on accessible technologies he can use, including a malleable stylus to wrap around his wrist, as he has not regained finger control yet, that allows Ryley to access, read and respond to text/emails…real important stuff for a 19-year-old. He also has been successful in using modified utensils to feed himself certain foods…rigatoni is A LOT less frustrating than angel hair pasta. He continues to battle the “shivers” with bouts of extreme body temperature reduction but they are managed through a good supply of comfy blankets fresh from the dryer. And, as with anyone in his situation, he continues to battle the sadness and the lack of desire at times. This is normal and as the clinical team here has stated numerous times, if he didn’t have these feelings they would be more worried. It’s all about limiting them and substituting positive thoughts and visions of his future. Coming home for a bit will help with this and right now his scheduled inpatient discharge date is the middle of this month! Like anything related to SCI, this schedule can change at any moment…it’s called “Shepherd Time” here. The plan is for him to come back to Raleigh for several weeks to build up some strength…both mentally & physically…and then come back to the Shepherd Center in November/December time frame for their outpatient day program. There are exercises that Kim has learned during her “residency” that we can do at home and I am researching other SCI PT/OT options in the Raleigh/Durham area but so far it looks limited. Yet, I know the time at home will do him some good. So much more to consider moving forward, home/bathroom modifications, accessible vehicle purchase, disposable medical suppliers, etc. etc. All doable, just rather overwhelming to consider all the things our current house doesn’t have in order to be accessible. It will get done, it must get done. We tried to venture out to the Georgia Aquarium this weekend but it just didn’t pan out…perhaps another time. We just got take-out last night and brought it back to the room and enjoyed some family time. It was nice to see Will & Colby on either side of Ryley laughing away at some Vine videos and for a moment, things just seemed normal, and it was. Will just headed to the airport for a flight back to Greensboro, Colby & I will be heading back to Raleigh in the am…back to work, back to classes, back to routines. Kim & Ryley will do the same, back to work, back to classes and back to their routines. Thank you all for your continued support! We hope you can make the #GetARide4Ry event Margaux’s Restaurant October 21st and be on the lookout for more information about online access to the silent auction being held that night for folks from out of town or who can’t make it!
We love you all!