Wednesday, September 17, 2014

A Wonderfully Busy Week

Hey Forrest,  I'm sorry we haven't written lately.  It's been a challenge just keeping up with you this week and the days are flying by. Here are some highlights:


Dr. FaLkenstein, with  Maxie cheering you on, removed the surgical drains from your back incision ."ouch" 


This required a celebratory ice cream at Scruffy's!


Your great pal Keith came to visit and you got to ride in his Jeep with him to the Hill School! 


Where a rousing game of bocce ball ensued. 


You began balance and strengthening exercises with your great champion, and extraordinary physical therapist, Del.

I don't have a picture for the most exciting news. With Tami's help, You completed your application for college!!! Beginning with an online course at Northern Virginia Community College, hopefully beginning next week!

You still tire easily and are in some discomfort, but your characteristic good humor and determination challenge us all to keep up!  And this next week promises to be just as exciting.  

Thrilled with your progress and grateful to be home,

Mum





Monday, September 8, 2014

Grateful

Darlin' Forrest.   It's hard to explain.  But even as I watch you refusing help and struggling to dress yourself, in spite of the discomfort and the logistics of managing the drains, I am grateful. My mother's heart is overflowing with gratitude  for your determination and your growing Independence.  The simplest tasks that most of us probably take for granted, you accomplish with patience, grace, and an unfathomable strength.  As I watch your fingers slowly manage the buttons of your shirt, I marvel at the exquisite precision of fingers that respond to your direction.


 None of us should ever take our own fingers for granted. 



I am grateful beyond words for your friends who brighten your days with their visits, face time, and messages. 

How great to be able to receive a visit from Caroline and Shelly at your front door!


It doesn't matter that you aren't strong enough yet to safely climb the stairs...
if Angel, Derek and Tami are waiting to applaud your arrival on the BrightWood "roller coaster"! 



And extreme Jenga ...



is so much more fun with virtual participation  by your awesome brother Austin!



How can I explain the thrill of hearing you belt out the words to your "Brothers Song" with Tom and Kyle during music therapy today at A Place To Be, when we couldn't even know that you would still have your voice after surgery?!? 


As the sun sets over BrightWood, I am grateful for this day and for every day we can share with family and friends,

Hug a friend, call a family member. breathe in the fesh September air, give thanks for this day. 

God Bless,

Mum




Friday, September 5, 2014

The Verdict Is In!

They all agree:

Dr Kumar,  Forrest's primary surgeon at Johns Hopkins, 

Nurse Dawn, who has helped care for Forrest for almost 2 years including 3 hospitals and BrightWood Rehab, 

Dr Falkenstein his primary care doctor since we moved to Virginia in 1996 and Matt, one of Forrest's best friends since preschool, all concur:

"Forrest is doing GREAT"!!!!! 

HOORAY!!!

Thursday, September 4, 2014

BrightWood Homecoming !

We think the smiles on Forest's and Toliver's faces say it all!  

Thank you for keeping the faith, 

Team Forrest

Break Out!

We are BrightWood Bound!
YAYYYY !!!!!!!!!!


Wednesday, September 3, 2014

Only a minor "bump in the road"

As Forrest is getting stronger and moving more often through the day the drainage from the major surgical site on his back increased and unfortunately the drain tubing clotted creating a large pocket of fluid in his back. The tubing is open again and we are hopeful that overnight the swelling in his back will start resolving and our escape tomorrow will not be delayed.  Dr. Kumar came by to see Forrest again tonight and is optimistic that the graft is going to be good and the drainage will resolve without surgical intervention.   Throughout this uncomfortable day Forrest has powered on, refusing additional pain medication,  even managing to feed Toliver himself tonight!  Toliver was delighted to bring Forrest his bowl and waited politely until Forrest said the magic words "Go for it Tolly" before chowing down. 

As eager as we are to get home, we will miss the many wonderful nurses, doctors, and physical therapists who have helped Forrest immeasurably during his stay at Johns Hopkins.  They clearly have been as delighted and amazed by Forrest's rapid progress as we are.  After many painful and prolonged recoveries, it is a thrill to see him doing so well at this stage. There are bound to be hurdles ahead but he is strong and we are blessed by your love and support.

With Nurse Dawn standing watch bedside tonight, Tami and I begin packing up our 44 outpost.  Transport support team Rebekah and Kent arrive in the morning and with any luck we will be BrightWood Bound tomorrow.  
 
Mum & Team 44



Tuesday, September 2, 2014

Physical Therapy today

Although Forrest's balance is precarious and his strength is far from his pre-surgical baseline, his determination and enthusiasm are as robust as ever. His PT asked him for 10 marching steps while seated bedside and of course Forrest proceeded to give her 15. Del would be so proud of his Champ!  

After an arduous hike down the hall to a big window overlooking the Baltimore Harbor, with two fantastic therapists to keep Forrest safe and on track, Toliver rewarded Forrest with HIS preferred form of physical therapy... FETCH!!!  They have both been waiting for this exquisitely precious toss of the ball. 

Tami will be Forrest's guardian angel tonight to make sure he practices his extraordinary thumb wrestling technique and doesn't attempt another unauthorized exit from the bed. Thankfully, either Tami or Nurse Dawn have been bedside at night and have intervened successfully to keep that precious Noggin safe around the clock. 

If our consults go well tomorrow and Forrest continues to make steady progress, without infection or other complications, we just might make it home to Brightwood on Thursday!!!! 

Whew. That would be sweet. 

Thrilled to be on the homestretch,

Mum and Team Forrest