Monday, January 30, 2012
Thursday, January 26, 2012
Forrest visited NRH yesterday. “ It has been a long December but there is reason to believe maybe this year will be better than the last”, stealing a line from Counting Crows. While we would prefer to be in a better position medically and cognitively we have been in worse positions. A year ago Forrest was lying in a coma that we had been told he might not wake up from. So while we struggle thru the daily grind of caring for him, turning every two hours, making the smoothie we know things can be much worse and we are thankful and optimistic that this new year will bring some consistent positive changes. The challenge for his caregivers and friends is to ignore the past and all the things we wish had been done differently, focus on the present which is where he desperately needs us all and remain hopeful for the future. We know he has one or two more major surgical procedures and we are trying to strengthen him for those.
His friends going back to school without him has taken a noticeable toll on his attitude. We do our best to cheer him up and he still laughs at movies and bloopers. Nick was here almost every day during Christmas vacation and Forrest really enjoyed his visits and the visits from other good friends. We and Forrest missed them when they went back to school and obviously it is hard to watch them go, knowing Forrest should be with them. Keep those videos and messages coming back in we are showing them to him.
Yesterday was a major event of his recheck at NRH. It took the new 44mobile, his tilt table innovatively strapped in so he can lie down, since he can’t go that far in a chair yet. So it takes a driver (me), Mom and Austin in the back helping out and Chad, a LPN,EMT who was along to help if we got in a jam. The system currently requires placing him on the table bodily and then removing him and placing him in his chair when we arrive. So Maylin was in another vehicle with his chair. We expect to fine tune this system a bit over the coming weeks. It is still challenging to take him out particularly for the longer jaunts. Yesterday required several in vehicle adjustments and suction sessions but nothing that turned to a big time emergency. We travel with a lot of gear and meds so we are prepared for some but not all problems.
Forrest arrived did his recheck and did well. We are adjusting several medications based on the Doctors recommendations and our experiences on what we are able to do with him. Then two of his therapists came down to see him in the outpatient area when they heard he was back, he seemed glad to see them. He then went up to 3rd floor Neuro pediatrics and was greeted by the nurses ,Doc’s and others on the floor like a Rock Star! Everyone was excited to see Forrest back.
Our nursing situation at home has stabilized dramatically over the last week or two and we can all feel better but we still miss many of the smiling faces of the nurses at NRH, it was great to see them again.
Team Forrest trucks on!
DadMaylin test rides the new tilt table
Monday, January 16, 2012
Sunday, January 8, 2012
Hey Forrest & Austin, it’s your Mom. This was a week we have waited a long time for. We are settling into our new routine at BrightWood, wrapped in the warmth and safety of our family, friends and community. The Man Cave has taken on the pulse and complexity of a 24/7 rehabilitation unit. We are building our own finely tuned team of Doctors, nurses, teachers, physical therapists, massage therapist, equipment technicians, suppliers, contractors, and most importantly, our collective friends and family who offer their unconditional love, faith, homemade nourishment, and emotional support. Your friends continue their own vigil. They come by, lighting up our home with their smiles, energy and youthful optimism.
We managed a number of firsts this week. Forrest’s first visit to our stable, where my Foxhunter, Finn, gently lowered his massive Irish head into Forrest’s lap and christened him anew with loving horse slobber. At Austin’s suggestion and with Tom Switzer’s and Tom Northrup's orchestration, we bundled up Forrest for his first outing from home, which entailed a snail’s pace drive to the Hill School. A commute we used to make in 7 minutes flat, took us hours of preparation culminating in a perilous 20 minute drive, but we made it and it was Magic. We rolled Forrest into his 8th Grade room at Hill and were received by an amazing group of teachers, mentors, coaches, heads of Hill… so many childhood memories, so much love and support. These are the same amazing individuals who rallied around you, Austin when you were only eleven and recovering from heart surgery. Already wearing gloves to protect Forrest from any exposure to germs, one by one they sat next to you Forrest, held your hand and shared some of their favorite “Forrest moments”. We were a bit worried it might be too much for a first outing, but you were visibly relaxed, safe in the familiar folds of the Hill Community.
With Del Wilson and Valerie Lee’s help, we have put together a rigorous BrightWood therapy plan. And with Dr. Falkenstein and Dr. Lee’s oversight, we are closely monitoring Forrest’s medical status and emergency plans at home. Tom Sweitzer continues as your unflappable music therapist and mentor, artfully encouraging and challenging you to find your voice, to sing your own song. Today, with Austin’s and Pop’s encouragement and physical support, you stood twice, Forrest. Each time holding your head a little higher, your size 12 feet a little more firmly anchored on your home ground.
As I write this, I am between shifts but at long last I am sitting by our own hearth, with Sundance at my feet and our parrots, Cap’n Jack and Carmen carrying on an animated debate. We are almost a year out from your injury Forrest, and in many ways we have only just begun this seemingly endless battle. The details involved in managing the days and nights at home can be overwhelming, but we are indeed blessed. We are home. We have each other. We are enveloped in the love of our community, our neighbors, our lifelong friends. And after a hard day of rehab for Forrest and all-night shifts bedside for Austin, we can slip outside together and soak up that ephemeral winter sunlight, breathe in the scent of the Virginia woods, and gather our strength for the next chapter.
With Endless Love for our boys,
Forrest reconnects with teachers at Hill School