Thursday, January 26, 2012

Update: Thursday, 1/26/12

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!



Maylin test rides the new tilt table

Visiting Forrest's friends at NRH! Was so great to see everyone

Forrest was a rockstar, everyone in the halls couldn't wait to see him and say hi

It takes a team to transport to DC in Forrest's van

Forrest staying strong during a long day


  1. Wow. Again, most impressive team. And way to go Forrest in successfully dealing with it all. And of course they were all glad to see you back. Can't wait for the next good steps. Love to all Aunt Lynn

  2. How wonderful! I'm so glad the recheck went well, and I'm so proud of all of you for accomplishing that long drive back and forth. You are all mighty warriors!!

    We out here are staying right with you! Prayers are coming your way every day.

    Love, Joyce and Wilbur

  3. Grandma Norma AllenJanuary 26, 2012 at 10:40 PM

    All team 44 - you just continue to amaze us. Forrest - you are so handsome and look so good. I'm sure that you know that group is doing everything they possibly can. I know you've come to trust them all. So proud you came through in such flying colors. We all just wait every day to hear how you are doing. Good going Forrest. Love and prayers are with all of you always. Keep those smiles coming guys. They look so good. lSeeing you all sure makes me happy. :) :) Grandmom

  4. WOW....what a day. I bet there was a lot of napping today! xo Thanks for the updates!

  5. Wow! And I find buckling a baby and a preschooler in and out of their carseats several times a day to be a challenge. You guys are an impressive, well-oiled crew, indeed!

    Thanks for the update. With a few days between posts and Jay out of town so I didn't hear your news from him, I'm glad to hear that the nursing situation is better and that Forrest is strong enough to make the journey back to NRH. I hope Forrest will soon be able to communicate with his friends via email and Facebook. I'm reading "Physics of the Future" and it talks of some remarkable research that lets disabled patients communicate through computers as they are regaining movement in their arms. Knowing Kent, I'm sure you already know about all the latest devices that can aid communication. Keep up the good (and hard) work. We're ALL keeping the faith!

    Diane & Jay, who just got home tonight and is already sawing logs since he's in the UK time zone

  6. Looking good buddy! Stay strong and keep your chin up!

    “Champions aren’t made in gyms. Champions are made from something they have deep inside them a desire, a dream, a vision. They have to have the skill and the will. But the will must be stronger than the skill.”
    - Muhammad Ali

    Love...the DeSantis Family

  7. Wow! You guys are such an amazing team and Forrest you are such a fighter!!!

    Glad to see the update and can't wait to see more progress!

    God bless!

  8. What an amazing vehicle! It is so great that you have all this equipment to help Forrest make his recovery. I am so impressed what has been developed to make all of his rehab possible. Keep the faith and we will all keep thinking positive thoughts ! ROLL ON !
    Paula Horne

  9. Hi Forrest --

    Nick has officially started practice and I know your amazing efforts, every day, will inspire him to try his hardest every day too! Keep inspiring...
    The Weedens