Picture of the Day: 9/30

Hi all, as Forrest improves day by day, visits from friends & teachers continue to inspire and motivate him. We also show him almost daily your videos posted to the Friends of Forrest facebook page. He really lights up when seeing your thoughtful messages and hearing what you all are up to. So to his peers, when you get a chance to take a break from "studying" for a minute, record and post a short video (1-2min), he really loves hearing from you. The girls have had a great turn out recently, lets get some guys posting videos as well! Thanks!

Here's a picture from today of Forrest working hard at the difficult task of maintaining his equilibrium while sitting.

Picture of the Day 9/26/11

Forrest listened intently this morning as I told him again about the Super H 5K and how he inspired so many people to get involved. Our family was deeply touched by the outpouring of support, donations, and participants. No matter what our situation, it is somehow empowering to know that we can always lend a hand to someone else in need. All the week-end's positive energy and love has enveloped and re-energized Forrest. Here Forrest is taking his own first steps in the"LightGate". Hopefully next year, he'll be able to participate in the Super H Race himself!

With Love and Gratitude for our amazing group of friends, family and community,

Rae

Picture of the Day, 9/25/11

We were blown away by all the support at the Super H 5k in Tysons today! Team Forrest was the top fundraiser and generated $5,000 for NRH's adaptive sports program. Many thanks to Pops for holding down the fort with Forrest and to all who donated and came in to walk for Forrest and NRH!

Just a portion of the people who came out to walk with Team Forrest

Picture of the Day 9/24/11

Forrest strumming Dulcimer with Uncle John after music therapy with Tom Switzer!

Picture of the Day 9-22 and Team Forrest 5k Update!

Picture of the Day:

Caroline Elgin warming up for the NRH 5K Fundraiser!

Forrest and Team 44 are truly blessed to have such amazing, supportive, and dedicated friends like Caroline! The outpouring of love and support Team 44 has received in just the past week for NRH's 5k has been both astonishing and humbling. We can't wait to see everyone on Sunday to show our appreciation in person! Team Forrest will be hosting a tail gate after the race. So if you'd like to join in the 5K the link is on the side bar or bring a little something for the table and join our tail gate after the 5K!

Picture of the Day 9/20

In spite of continued nausea and occasional trembling these last few days, Forrest's neurosurgeon, Dr. Armonda, came by today and is really happy with his overall progress. Here is Forrest giving him a fist bump.

Update: Sunday, 9/18/11

Along with the therapists and nursing staff at NRH, we are amazed and deeply touched by the outpouring of support for our TEAM FORREST 5 K Race Walk & Wheel Team on next Sunday,
September 25^th at Tysons Corner. Although we have surpassed our original goal, we are continuing to raise money for the adaptive sports program at NRH. Please see the link in the sidebar and come join TEAM FORREST!

Forrest has had a good week, highlighted by his first steps between the parallel bars and slow but deliberate movements of his hands and arms. Sunday is a quiet day with no scheduled therapy. He watched football with his Dad and we did passive range of motion exercises. He is still having some tremors that we are adjusting his medications for. Later this afternoon, he enjoyed a visit from his good friend and former nanny of ten years, Mita Santos, and a spirited balloon fight with everyone including Sundance joining in. A truly amazing moment came at the end of Mita’s visit when we decided to sit him up on the side of the bed. He did that and then with help and support he carefully stood up. After a few minutes we sat him back down and thought we were done. But he sat for a minute and then initiated standing (with assistance) not once more but twice. He was very tired afterwards but clearly he wants to stand, walk and move as he attempts to come back to us.

Mom had a busy week covering with Maylin while Austin attended a business conference in Atlanta. She worked hard but got to see some great efforts from Forrest this week. She also had several girlfriends come into D.C. to help out and sometimes take her to lunch and provide her with an important link to Middleburg. Austin rolled back into town on Saturday and immediately got to work helping his brother out and acting as a great secondary therapist. Dad’s job is as usual is to spend time on the weekends and give Rae and Austin some breaks and provide Forrest with some Dadtime.

Another high point of the weekend was the visit of Hunt Lyman, Forrest’s seventh grade teacher at Hill School. He read several essay’s from Hill School students and then recited several powerful poems that he thought 44 might be interested in. Forrest listened intently as he struggled to regain control of his body. We were all moved by his delivery of “Invictus” by William Ernest Henley. It was written by a 18^th century young Englishman who at 17 had spent much time in hospitals and had most of one leg amputated due to Tuberculosis of the bone. He struggled with his disability but wrote this poem about courage and stoicism nine years later. He went on to be an accomplished poet and editor in London until he died at age 53.

Invictus

Out of the night that covers me,
Black as the Pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.

In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
My head is bloody, but unbowed.

Beyond this place of wrath and tears
Looms but the Horror of the shade,
And yet the menace of the years
Finds, and shall find, me unafraid.

It matters not how strait the gate,
How charged with punishments the scroll.
I am the master of my fate:
I am the captain of my soul.

We have no doubt that with Forrest’s determination, courage and undaunted spirit he will calm the currents of his mind and recapture the life he is meant to live.

Dad

The family together standing strong

Mita Santos with Forrest

Hunt Lyman reciting Invictus to Forrest

Picture of the Day 9/17

Forrest, Valerie, Mom and Sundance enjoying the garden in Washington. Forrest looking particularly sporty in his Orange hat and Sundance being brave as the squirrels harassed him.  Full update tomorrow.
Dad

Picture of the Day 9/16

With great courage and tremendous determination Forrest successfully navigates the parallel bars with some help from his therapists as Mum and Valerie cheer him on!

Update: Sunday, 9/11/11

Sunday September 25th, Austin, Rae, Maylin, and Sundance will participate in the 2011 Super H 5K Run Walk & Wheel to raise money for the adaptive sports program at NRH. These programs help individuals, some as young as 6 years old, return to active lives after a disabling injury or illness. We all know how important Lacrosse is to Forrest and our own favorite sport is to each of us, so this is a chance to help less fortunate individuals participate in sports too. Our Team Forrest Goal is to raise $2000, enough to purchase a basketball wheelchair for NRH's adaptive sports program. We hope that some of Forrest's followers will be able to join us on September 25th at Sport & Health in Tysons Corner, VA. We also see this as a way to show our appreciation for all of the dedicated and compassionate caregivers at NRH who are working around the clock to help Forrest in his battle to recover.

Austin, Rae, Maylin, and Sundance will be there (while Pops spends the morning with Forrest) and we'd love to see you! If you want to participate go to http://www.firstgiving.com/nrh/superh and register to "race" with Team Forrest! Registration is $25/ person. If you can't join us in person on Sept. 25, you can still support Forrest's Team, by making a donation. Click on Forrest Allen's team name on the above mentioned website and look for the green donate button.

We hope to see you there and gather together in Tysons Corner for some Team Cheer! If you have any questions, don't hesitate

to e-mail our own Team Forrest Race Coordinator: Maylin at mjcoggiano@gmail.com

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Hey Forrest, it's your Mum again. You've had a challenging but rewarding week at NRH. As you work every day to regain your strength and control over your body, you are creating the building blocks of a new life. Even though you haven't found your own voice yet, we know you understand everything we say and that you are desperately trying to find ways to communicate with us. Your courage and determination are clearly communicated through your efforts every day. Your love and appreciation for your brother, Austin, is communicated through your hugs. And your wonderful sense of humor radiates through your smiles and occasional laugh. In spite of everything you've been through, you still shine, Forrest.

This week you gathered the strength to move your legs and with help from your therapists, you took a few steps on the parallel bars! I held my breath as one therapist encouraged and coached you to raise your head as you towered above him. Tears of joy and awe flowed as I watched you slowly... slowly, raise your head. Even with your knees buckling, for a moment you held your head high and regained a posture of strength and pride. In that moment it was clear, anything is possible. On Thursday, there was celebration at the nurse's station when you responded to your nurse's request with a fist bump. As you regain some control over your arms, your Occupational Therapists help you practice again and again the sequence of movements required to put on and take off your shirt. As you become more aware of your surroundings, you are understandably frustrated and impatient with your situation. The wonderful visitors you have had this week help ease the frustration and provide an essential life line for you to the outside world. They bring shared memories, familiar voices and encouragement beyond measure to you and your entire team.

Along with amazing highs this week, you have struggled with recurrent episodes of dystonia & tremors. Symptoms we had hoped were banished from your battleground. We move with you from elation as you regain some new control, to heartbreak as you wrestle these demons, that once again beleaguer you. While Sundance lies at my feet and I write this message, your father is taking you back to Washington Hospital where the neurosurgeons will "dial down" the pressure

setting in your shunt. The plan is that the lower setting will remove more fluid from around your brain, thus lessening the dystonia and tremors. Further adjustments in your medications will surely help as well. And as the poster on your hospital room doors reminds all who enter,

Courage doesn't always roar, sometimes it is the quiet voice

at the end of the day saying, "I will try again tomorrow."

Love,

Mum and Team 44

Dr. Ric visits from Atlanta

The Daum family visits

Jacob wears Forrest's party hat

Keith and his Dad with Forrest on the way back from the garden.

Update: 11:00pm on 9/5

Forrest has been making slow but steady forward progress in the last few days. He was two weeks out from his cranioplasty. Dr. Armonda stopped by on Friday to take out almost 50 staples. Dr. A asked for a fist bump afterwards but since removing staples hurts, it’s probably lucky Forrest didn’t feel up to gesturing. The next day Dr. A stopped by unannounced to get his fist bump and Forrest immediately stuck his arm up and gave him a fist bump. It was a great moment and Forrest was strong enough to hold it for Dad to get a picture. Dr. A was excited with the progress as was all of Team 44. Another notable happening, was a hug given to Austin from Forrest tonite after a long grueling day of therapy and three and ½ hours up in his wheelchair.

So it is still a long painful road back for Forrest. He daily struggles through more pain and frustration in a week than most of us will experience in our lives. But to be able to move his hands and arms again, even slowly and infrequently, is a major forward move after two to three months of decline. Forrest and I talked this weekend (he can communicate with blinks and hopefully his iPad soon) and I reminded him that if he can do one small new thing everyday it will be huge in the long run. He is trying so hard. His increased muscle tone makes it very hard for him for to use his hands and arms and legs. The Doctors at NRH are talking about doing some procedures to try to relax the extreme muscle tone and posturing. There will be some pain involved in the procedures and will require a general anesthesia but hopefully it will allow him to progress with his mobility in his rehabilation.

Aunt Lobie visited for a week and helped recharge and refresh Rae as well as visit and support Forrest. Big brother Austin has been busy starting a new job, being a major advocate for Forrest as well as downloading movies to entertain him. He enjoys movies and humor and I have included a picture of he and I sharing a chuckle on watching “Saving Silverman”. Rae as ever is tireless in talking to the Doc’s, checking and rechecking the dozens of medications and treatments he is receiving and monitoring his calories since he is still having to be fed and receive water via a peri-epigastric tube (PEG). He is making progress on his swallowing thick fluids and had a very good session today on swallowing applesauce. Realistically it will be a while before he can swallow enough food and water to support himself and not be at major risk for aspiration and pneumonia, which is a daily concern.

So life goes on slowly and painfully but each little victory is a major celebration for Team 44. Forrest continues to struggle and is coming back again. If he can swallow, move hands and chuckle in the midst of everything happening to him, then anything is possible! What can we do but provide every level of support we can.

Proud to be a continuing member of Team 44,
Dad

Nick encouraging Forrest during PT.

Dr. Armonda getting fist bump.

Mom, Forrest, and Aunt Lobie.

Forrest smiling while watching a movie.

Update 11:30pm on 9/1

Forrest is having a great first week at NRH. He is gaining back a little bit of his strength and duration each day. His original team of therapists and nurses have been so encouraging and eager to help Forrest regain his lost ground. And tomorrow his 49 staples come out! Stand by for more pictures...

In addition to Forrest's progress, we have two exciting Team 44 announcements:  First, Austin has accepted an internship with a consulting company in DC and will be starting work tomorrow. As you all know, Austin has given himself with unparalleled grace and devotion to his brother's recovery. He has also provided a rock solid base of emotional support for me through many dark days. Austin is the first and most exuberant to celebrate each and every milestone Forrest reaches. And in perfect Austin style, he would only accept this position if the schedule allowed him to continue to be closely involved in Forrest's journey home. We couldn't be more proud or excited for Austin as he begins his own journey! 

Speaking of journeys...it would be a great help, if anyone has a spare road bicycle Austin could use for a few months to commute to work!

Secondly, we have been blessed with a new addition to our Team. Maylin Coggiano has been helping us out part time and has agreed to join our Team Full Time now! She is a pure delight and brings a wealth of talent and positive energy to our world. She has been helping us with lots of logistics... like remembering to eat and giving us precious time together away from the hospital. She is beginning now to work with Forrest and already he is responding to her enthusiasm. As she shares a bit about her time with Forrest below, you will get a sense of what a remarkable young woman Maylin is.

With a grateful heart,
Austin & Forrest's Mum

You know the feeling that comes over you when you realize you are exactly where you're supposed to be in the world? Well, that's what I'm feeling right now. As a recent graduate of the University of South Carolina with my degree in Elementary Education, I finally feel like I found where I'm supposed to be!

All my life I knew I wanted to be a teacher, and in the past several years I narrowed it down to working in a critical needs school. I made it through a rigorous seven month application process with DC Public Schools and was convinced I knew more than the world about where I should be. But, just like life likes to do, it redirected me right to Forrest!

In the beginning of August, I traveled up to Washington, DC with a self-mandated two week deadline to find my nitch. If I was still confused at the end of those two weeks, I would journey back to South Carolina and re-evaluate my life in the dramatic way only a twenty-two year old can. I wasn't even in town for six hours before a friend of a friend of Team 44 (Yeah Shannon Davis!!!) passed my name along the chain! How crazy is that!? After a couple days of pre-screening/screening to make sure I wasn't a complete nut and an interview where I was introduced to Team 44's whole story and who they were looking for, I was welcomed onto the Team with open arms! Monday only marked the beginning of my third week on the Team, but I can't even remember life without them!

I've been hearing and reading hundreds of stories about Forrest's sense of humor, passion for fun, kind spirit, and unparalleled strength, but the one thing that really shines through is everyone's face when  telling these stories! You can really tell a lot about a person by the company they keep, and from what I've gathered from meeting Forrest's friends and family, he's one remarkable guy! Forrest is extremely lucky and blessed to have such amazing people on his side, but I also think it has to do with the kind of person he is. To see the love and admiration in everyone's eyes is a true testament to Forrest's extraordinary character.

Tuesday was one of those days Team 44 will be able to look back on and smile. Forrest rocked it! From a stellar OT session where Forrest tracked himself while holding the mirror WHILE rotating his mid-section, to an amazing PT session that included standing up three times (with a little help from a machine and some expert physical therapists). He held his head straight up and high all by himself! He towered over everyone, including his good friend, Nick (who worked like a natural PT with Forrest)! We even got to go outside and enjoy the beautiful DC weather and gorgeous garden here!

As if all that wasn't enough, Forrest and Team 44 had some amazing visitors! He had an awesome visit from his best friend since kindergarten, Nick Weeden, that put a smile on everyone's face! Nick told hilarious stories of trips with Forrest, fun sleepovers, awesome birthday parties, and just all around great times. We even recorded Nick's stories so Forrest can watch them whenever he wants! Like all that wasn't enough to send Team 44 to Cloud Nine, we got a surprise visit from the wonderful Mr. Bowers from Hill School. Even Nick was surprised! Along with his contagious smile and treasured Chicken Soup for the Soul book, Mr. Bowers brought tremendous words of inspiration for Forrest. His visit officially put the cherry on top of an amazing day! Forrest worked hard and reminded us what we were really working for and our visitors brought bright smiles and good vibes to freshen our spirits!



With love, 
Maylin

Maylin helping with Forrest's OT session.

Mr. Bower and Nick with Forrest.