Picture of the Day: 12/28

Forrest and Mum enjoy being home at Brightwood.

Update; Monday, 12/26/11

Thank you all for making our homecoming so magical. There are innumerable people who made this Christmas possible for Forrest and his Team. We can't possibly name everyone who has given their time, love, and talents to get us home. But we have to mention a few of our special Christmas angels and elves: Jimmy Emmet who created Forrest's new Haven (The Man Cave!) Maylin and Whitney who meticulously stocked and organized the Man Cave, Tom Sweitzer for organizing the Christmas Carolers (more than 40 Carolers raised their voices here in celebration).

Marsha Woolman's homemade cookies & Robyn's spiked apple cider added to the flavor of the day. There was love and merriment in the air: Peyton Coles taking the lead in their family carol, Sundance jumping on a chair to take center stage for the group picture, Nick Weeden forgetting the words to Rudolph the Red Nose Reindeer, Forrest SMILING at Matt Morency's antics...all in all... a great day thanks to you guys!

We are truly blessed to have such amazing friends and family to support Forrest. Whether you were able to make it out to the farm in person or were here in spirit, Forrest had a wonderful Christmas and a great start to a new year of progress. He even raised his arms on his own today!

Thanks to everyone who was able to share Christmas Day at BrightWood!

Forrest loved all the groups of carolers singing in his Man Cave.

Standing tall on Christmas Day with the Lees!

Brothers home together and enjoying the end of Christmas Day by the fire.

A Homecoming Celebration!

Team 44 and Tom Sweitzer invite you to join us in celebrating Forrest's much-anticipated homecoming with some drop-in Christmas Caroling (Christmas Music Therapy)!

Please join us on Christmas morning from 11:30am to 12:00pm at Brightwood. We'll have hot cider and Christmas cookies and gather by the fire pit. Since the grass is soft, there will be parking by the garage at the house or at Virginia Equine Imaging. You can walk down from there! We can't wait to see everyone who can drop by!

Since Christmas Day is such a busy day, please text Austin if you would like to spend some quality time with him another day. Time with his friends is so very important to Forrest, but since he is still adjusting to being home and resting after the transition we are trying to keep groups small.

Finn and Robyn welcoming Forrest and Mum back to Brightwood.

Del Wilson and Forrest having a great Physical Therapy Session at home.

Update: Thursday, 12/22/11

What a day. That was by far the most complicated, yet also the most rewarding, move we've done. Our fearless leader best-Mom-in-the-world is seen below after riding the ambulance with him from the hospital. Maylin and Mom did a fantastic job breaking down his room at NRH that we basically spent 6 months seeing how many items and how much "stuff" we could cram in there.

It's safe to say we definitely miss the amazing support crew back at NRH that have been an integral part of Team 44, and will again when we go back after his last surgery. The amazing team of doctors, case managers, nurses, therapists, and others at NRH were fantastic and we miss their camaraderie as much as their help. We are painstakingly and sometimes humorously re-inventing our daily care routines that we had so well polished. Those definitely remain a work in progress for now.

But Forrest is holding strong as always. He gave a deep and knowing smile this morning that grew as Maylin told a story of things she saw in the parking garage. He's very much still "in there" and comprehending much more than he can express for now. He loved seeing his friends that welcomed him home and he can't wait to see more friends and supporters in the days to come. It's important for him not to be overstimulated, these next few days of adjustment will be tough and he needs to get some well deserved rest. Please feel free to call or text me (540-729-2620) and I will let you know when is a good time or not. Both Forrest and ourselves can't wait to see everyone, we just have to make sure Forrest isn't overloaded.

All the best from MIDDLEBURG!

Austin

Forrest catching up on a long overdue healthy dose of Brightwood Farm sights, sounds and smells. Arriving at the house.

A few friends welcoming their buddy home

Update: Monday, 12/19/11

Forrest is coming home. If all the last pieces come together… this Wednesday. He'll be coming home for 4-8 weeks until his next and last surgery in DC. It may not be the situation we were all hoping for but it will be home for Christmas. Mom is juggling the medications he is getting and the capable NRH staff, Docs and nurses are helping us get organized. Rae has organized a Forrestmobile to move 44 and his wheel chair around. Rae is working on the nursing and PT Staff to help us at home.

We are urgently looking for LPNs (licensed practical nurses) or RNs (registered nurses) to help us for the next 4-6 weeks while Forrest is at home. They need to be happy positive individuals, have experience, reliable transportation and ideally live not too far from The Plains. (Apparently we are considered to be too "rural" for most nurses!) Valerie Lee has graciously offered to be the point person for us, so please email her at Valerie@theleeclinic.com if you have a lead for us!

Austin and Maylin are working feverishly to put things together for the move. There is a lot of work to be done to move Team 44 from DC to Brightwood. Austin will still be working on his consulting job at the National Zoo Seal and Sea Lion construction project and will be spending half the week or as much time as possible with Forrest at the farm. Maylin will continue to do all things for Team 44, she will now be doing most of it at Brightwood until we move back to DC for the surgery for a while.

Jimmy Emmett and crew have been working tirelessly to ready the Man Cave for Forrest. Jimmy is downstairs painting as I write to make sure things are ready for our boy. It is very impressive and we will make sure we post some pictures as soon as the long awaited Forrest arrives.

Dad and the crew at VEI have been working on making sure we have all of the tools we need to take care of Forrest. His new electric bed has arrived at Brightwood and is the Ferrari of beds, way cool!

Forrest is trying so hard is and making slow but steady progress. We are excited to have him coming home and think it will do wonders for his spirit which continues fighting to soar no matter what obstacles are thrown at him. Forrest this year has faced more struggles and challenges than any twenty of us have in most of our lives. He has never given up even though he wakes up every morning to pain and the knowledge of what he has lost and how far he has to go to try to get back to where he was at any point this year. We thank all of you for staying with him and us through this struggle to have our boy back. So, Home for the Holidays, we can’t wait to have both our boys and our family back to Brightwood.

Dad and Team 44

Gio and Shayna drove to Brightwood to decorate our tree and Forrest's mancave with Caroline before coming to visit Forrest

Sundance must have said something funny

Forrest raising his arm for a thumbs up with Peyton and Sarah!

Update: Thursday, 12/15/11

Today is Forrest's birthday, and although he turns 19 in a hospital, we are optimistic and hopeful for a number of reasons. Forrest had a great day and we continue to work hard toward moving him home next week. He's been moving his arms intentionally a few times, and he stood tall with his Physical Therapist today. Although the botox injections were yesterday, they seem to be helping him relax his muscles already.

Additionally, we had another great outing today to the National Aquarium in DC, as both a birthday present to Forrest and a test of his stamina. It was the first time out of the hospital since his last trip to theNational Aquarium in October, and they graciously opened their doors to us again and made us feel welcome. He did great and seemed to enjoy getting out of the hospital, if only briefly. Forrest also had a visit from the Selfe's today, who've visited him many many times over the last year. Forrest even smiled for the camera today when taking a picture with the Selfe's (that hasn't happened in months!) We're looking forward to being home for the holidays and being amongst friends in Middleburg. We also can't wait to have Forrest's friends over to the farm. Thanks for the blog posts and facebook comments and videos, you all help us keep up the charge.

Best wishes from DC,

Austin

Headed off to the National Aquarium in DC!

In front of the albino alligator exhibit

Forrest smiling seeing the Selfe's

Update: Monday, 12/12/11

As I sit watching you sleep, Forrest, Christmas Carols are playing softly and the white lights on your little Christmas trees sparkle behind your hospital bed. You have been battling relentless demons for eleven endless months. I pray that as you sleep tonight, your demons dissipate, leaving you in peace. I pray that you slip away to happier places and times, filled with laughter, where you wrestle on the Great Room floor with your brother, taunt your father as teen age boys should, and dash off to spend time with your friends. Eleven months in six hospitals and seven major surgeries. Thursday is your 19th birthday and you will have spent almost your entire 18th year in the hospital. In the face of all the heartbreak and setbacks, the resilience and determination you share with your brother never fail to amaze and inspire your father and me.

It's time to bring you home to BrightWood Forrest, in preparation for your next and God willing last surgery, to regain your strength, to reconnect with familiar surroundings and the community that we all sorely miss. Team 44 is working feverishly around the clock to get you home for Christmas. You have to be "medically stable" and we have to amass a plethora of equipment and supplies to keep you safe and comfortable at home. This week you will undergo a variety of lab tests, a cat scan, radiographs, and another series of Botox injections under general anesthesia to relieve the muscle contractions that hobble your progress. Consultations with your team of specialists; physiatrists, neurosurgeons, nurses, as well as speech, physical & occupational therapists will help us fine tune our medical & logistical plans. We are determined. We are convinced that the healing power of being home with friends and your extended BrightWood family will brighten your days and reinvigorate your recovery!

We have so much to be grateful for, Forrest. So many talented and compassionate people have embraced your journey, amazing doctors, innovative therapists, delightful nurses, dedicated friends and colleagues. We are a blessed family. We are with you every step of the way. And together we are coming home. I will read the poem below that Shannon sent to you every day, while you are building the bridge that will carry you across the abyss, to a new shore and a new beginning.

Wishing all who have offered their love and support a joyous Christmas and Healthy Loving New Year,

Mum


It Takes Time To Heal
Ted Hibbard

It takes time to heal.

Build a bridge
from now to tomorrow.
Sink the piers
deep into the Earth.
Pour in concrete
day by day,
a little at a time,
and let it set.

It takes time to heal.

It may feel very awkward,
as if you're making empty promises,
as if you're simply spanning empty space.

But someday, somehow, somewhere,
you'll find yourself
upon a brand new shore,
glancing back at the bridge
which you alone have built.

It takes time to heal.

Update: Tuesday, 12/6/11

Wow, less than 3 weeks till Christmas, where did the time go?! It's beginning to look a lot like Christmas... even in Forrest's room. Dad went to the store and bought not one, but two 3' lighted fake Christmas trees to put in Forrest's room. We're supplementing the holiday decorations by downloading Elf, Rudolf the Red-nosed Reindeer (1964), and of course by playing Mariah Carey's "All I want for Christmas" over and over again.

Dad, Maylin and I are anxiously awaiting Mom's return late tonight, but from our Skypeing with her she seems to be in high spirits and ready to return. We were graced by a visit from Shayna and Giovanni last weekend. They drove 4 hours from College to see Forrest! It was lots of fun having them tell stories of Forrest and play wii with him. Forrest truly has some incredible friends.

Forrest is working very hard every day. Usually at least once a day he is able to make an effort to fist bump or raise one of his arms on top of a pillow. While we are waiting for the consistent fistbumps and thumbs up's which will make communication much easier, we are focusing on improving his strength and endurance. He continues to spend 2 hours in his chair twice a day, and is doing a few minutes of standing each day. He's holding his head tall and gaining strength in his arms, legs, and core every day. We are still working towards getting him home, even if only for a day trip in the near term. We will keep you updated as we know more.

Love from Austin and Team 44

"Gio" showing him a Mercersburg poster Danny Quinn made.

Shayna and Gio playing wii with Forrest

Even with it raining this morning, the Christmas tree helps make the room feel cozy and warm

Update: Thursday, 12/1/11

Forrest continues to fight back. He has been back at NRH struggling to get back into the rehab therapy schedule. After fighting infections and laying in a bed for 6 weeks he is working hard to get back into a wheelchair and doing various types of therapy for several hours each day. He is very deconditioned and perilously low on reserves after 10 and ½ months in hospitals. The longer he can stay up even in a chair and keep working on therapy the more he can make the effort to return to us. He keeps trying every day no matter how hard of a day he is having.

Over the last few days we have seen slow but steady progress. He made an effort at a fist bump with one of his therapists Tuesday and tonight made an effort to hug Maylin. He continues to smile and occasionally chuckle at movies and videos or even better visits from classmates and friends. He truly enjoyed visits from The Weeden clan. Madison Lee and Matt MacMahon came by and spent time with him and Austin has told me that he thought a large part of 44’s enjoyment has been visiting with his friends.

Team Forrest has been working hard to keep an eye on our guy with Mom working on a project a long way away and skyping with 44 when she can. Maylin is working hard and keeping us organized and making smoothies for Forrest as well as sitting with him for hours a day. Austin is doing his usual phenomenal job at NRH and the National Zoo. He covers everything from part time physical therapist to smoothie maker expert to discussing Forrest’s case with the phenomenal NRH Doc’s and nurses. Dad is coming in more to cover for Mom and we continue to work here at the farm to prepare for Forrest’s arrival whenever that may be.

Thanksgiving was made memorable with visits from all of Forrest’s Stone-side Aunts and Uncles and family and the Lee family watching over Forrest on Saturday so Kent, Rae and Austin could cook for them at the farm. Thanks Bill and Valerie and Stone Clan.

Forrest continues to make superhuman efforts to return yet again even though some days that progress is measured in inches. The rest of us are supporting characters to the champ who won’t stay down no matter how many times he gets knocked about. Keep coming back Buddy we are all in your corner.

Thanks for your patience and for following Forrest’s blog.

Dad and Austin and Team 44

Forrest working hard and reaching up to give Maylin a hug!

Mom at work. Taking water samples in Southeast Asia

Update: Thursday, 11/24/11

Hey Forrest

It's your Aunt Tricia. Today is Thanksgiving and it was a glorious blue sky day in the nation's capitol. As I left the apartment this morning on my way walking to NRH, I glanced down the street to check for traffic and saw the Washington Monument. I was startled at the sight of it. Made me think of all the things I take for granted everyday on a day of thanksgiving.

When it became clear that you wouldn't be able to make it home for Thanksgiving, your aunt Lobie made reservations for us to have Thanksgiving dinner at the Art and Soul restaurant in DC. Your Mom couldn't bear to leave you behind and decided we must bring Thanksgiving Dinner to the hospital so we could be with you. So this restaurant took extra time to create a special dinner for us and packed it to go, including a vegetarian request for me! Then we gathered in the hospital cafeteria surrounded by potted palm trees and atrium over head. We gathered together like most families do and celebrated what we have at this moment. Even though you couldn't enjoy the consuming part of the meal, you clearly enjoyed getting out of your room and spending holiday time with some of your extended family.

The support that surrounds you and Team 44 is astounding. Your community embraces every moment, every blog post. Your friends are steadfast in their commitment and come to see you and send video clips. Strangers follow the blog and post comments of encouragement and prayers. There is a wonderful team of doctors and nurses here who watch over you, like the medical teams did in the previous hospitals. Most importantly, we are thankful you are here with us. Your eyes are tracking us, watching us, soaking in sounds and images.

Your Dad brought his newest, cool gadget. It connects to his I Phone and projects images from his phone up on a wall or even a white paper plate! So he projected the video clip he had shot this morning at Brightwood. It showed all the improvements in the house. The Man Cave is being updated with a great big bathroom in the basement with a roll in shower, and room to move. It has a large open area for your bedroom. Just out the patio door is a large Jacuzzi for you to soak in. This hydrotherapy will loosen those tight places in your body and ease your soul. And just past the Jacuzzi is a impressive circle of stone benches surrounding a stone fire pit. This is where we will gather, dance around flames, and sing to the starry sky above to celebrate your homecoming. Soon you will be home, back on the farm with those large trees swaying in the winter winds, the rolling hills in the distance, the horses neighing in the pasture, brilliant Kentucky Cardinals skirting about. Sundance will be by your side and you will progress forward.

On this Thanksgiving Day, we give thanks for each other. In these many months of heartache and recovery, setbacks and dogged determination for a brighter future. We are thankful for our family, friends, doctors, nurses, and the kindness of strangers.

Love Aunt Tricia And Team 44

Holidays in the hospital can be rough and Forrest and his Team are particularly grateful for the love and support of friends and family during the holiday season. Our Thanksgiving week has been brightened by Forrest's friend Mikk and her mother, Abby Laughlin, who just wrote a beautiful post. And this morning the whole Weeden Clan arrived bringing more laughter, treats, memories and boundless positive energy to our Thanksgiving. And my own siblings all arrive this week for a "Pebble" reunion at BrightWood. The gathering was planned around Forrest's anticipated homecoming, but the Pebbles seemed to know I need them even more after this last setback. So though the Victory Dance will have to wait, we will still gather to count our many blessings and to celebrate the special love between brothers and sisters. The same love that binds Forrest and Austin along every step of this tumultuous journey.

Hug your children, call a friend, share the love. With gratitude,

Mum

Mikk and Forrest catch up

Nick and Whitney Weeden share Hill School memories

A warm and happy Thanksgiving with Forrest and family

Update: Sunday, 11/20/11

Latest news from NRH:

Written by Tom Sweitzer, his mentor and music therapist:

This Thanksgiving I am thankful for the experience I am having with Forrest and his family. Today we spent a couple hours playing music and sitting out in the sun with a beautiful breeze in our faces. I am thankful for Michael Ferster, Delilah Ohrstrom, and Brittany Horkan, and Debbie Sharples for selling Forrest hats at the Hill School.

It takes a lifetime to understand that the smallest things can make you the most grateful. Today, after hours of connecting with Forrest with little response, Rae and I took him back inside. While in his room we stretched him out and breathed a lot, Somewhere in the recesses of his brain there is life, a vibrant power ready to tell us his pain, his joy, his words. No sound came out, but for that moment, it seemed that in his mind he was making words. For at least twenty seconds he moved his mouth in formations that looked like WORDS! For that brief amount of time the world stops, and a mother unlike any I have ever seen before says, “Yes, Forrest! You are doing it!” The belief of a mother is enough for any of us to survive, to grow, to decide to keep going on. I am taken aback with every visit I have with this family. That my worries of everyday life pale in comparison to the everyday mountain they climb.

Forrest has a light and a spirit about him that reminds me that we are all lucky to be in his presence. That life is about the small victories. I sang the “Thanksgiving song” that we sing every year at The Hill School. I could tell he knew this song and that years of his life came back to him. Music is the substance of memory and recall. I am only on this journey with Forrest and am learning with him what music can do, but what is clear to me is the power of love that I see in his family is true Music, more than music, it’s God.

Forrest needs music and laughter in his life to heal. Please send as many funny jokes, pictures, You-tube sites as soon as you can. For all of Forrest’s friends if you have a moment make the funniest video messages you can to say hi to him, post them to the Friends of Forrest facebook group. He will remember you. Happy Thanksgiving Forrest!!!!

Update: Thursday, 11/17/11

Great news to share! It must be all your good vibes coming this way, or maybe it's Forrest's fighting spirit, or maybe it's a combination of the two, but he had a great 2 days. Last night he laughed and smiled watching Rush Hour outtakes. Because the shunt assist devices that were implanted Saturday are becoming more effective and his ventricular hydrodynamics are stabilizing, he is able to sit up without his ventricles over-draining. Today he sat up on the side of the bed and held his head high and straight for a couple of minutes!! This is the first time he's sat up in more than a month! Maylin and our fearless leader Mom were there today, along with their blindingly bright optimism.

The other great piece of news is that because his hydronamics are improved and he can sit up, he can now return to therapy. We are incredibly excited to return tomorrow to his same room at NRH that has been held for him with all his pictures, lacrosse sticks, notes and gifts from friends. While the nurses and doctors at the 2EI and 4G ICU units have been incredible, we are looking forward to getting Forrest back to work and on to the next chapter of his return home. To his friends(the majority), I hope you had a great first semester, and we would love to see any of you that have time next week. We've been telling him his friends are coming to see him next week. For those that can't squeeze it in, I guess your families might want to see you too :) , we'll see you over winter break. Contact Maylin or I as soon as you know when you might be able to visit (mine is 540 729 2620, Maylin's is on the "Visitors" update).

All the best, keep rocking it Team Forrest!

Austin and Team Forrest

Maylin working with Forrest while he's sitting up

Update: 2:00pm on 11/15

Forrest had another surgical procedure on Saturday to balance the fluid moving between his brain and his abdomen through the shunt device. Further down in the wall of his chest, the shunt now has shunt assist devices that will help regulate the pressure so there will not be such dramatic drops in pressure as we had seen previously. These devices were implanted by Dr. Armonda on the weekend; the surgical procedures went well, Forrest was recovering from them, and there have been adjustments to the shunt through the course of the weekend and x-ray follow ups … so it has been a busy weekend, which is why Team 44 hasn’t posted.

Grandma Norma and Aunt Bev came and visited Forrest over the weekend and for the early part of this week. Forrest was very attentive and focused while Grandma Norma read and showed him the Hill School yearbook from 2007 with many of his friends as they looked 4 years ago. He enjoyed listening to Norma’s stories about Grandpa Doc and her visiting him at Hill School. As usual, he was also very attentive and interested in the stories, videos, pictures and messages from his friends.

We are hoping, with the shunt assist devices in place, that we will be able to bring the fluid in Forrest’s brain into a steady state that will allow him to sit in a chair-type position and therefore once he is stabilized there, he’ll be able to return to NRH and his rehab.

We were hoping for a Thanksgiving with Forrest attending out at the farm, but it doesn’t look like that’s going to happen; we’ll hope for Christmas now, and see if Forrest can make further progress in his rehab. I know Forrest is looking forward to some of his friends visiting when they are home from college; please contact Austin or Maylin on how that scheduling is going as we progress through those dates. We particularly appreciate Cousin Lisa and husband Lee transporting Grandma Norma and Bev around this weekend, helping out as they often do.

So, Mum continues being Super Mum and handling all things Forrest and Austin is busy still splitting his work between his internship at the National Zoo and Team Forrest. We are hoping he continues to survive bicycling in Washington, DC traffic. Dad, who was able to spend a lot of time with Forrest this weekend, has to go off to his equine meeting and give some talks; he will miss Forrest and Team 44, but we are moving forward and we continue to appreciate your thoughts and prayers. Thanks again for all the communications from his friends, we continue to read them on a regular basis. Hope and prayers to everyone that is Team Forrest.

Sincerely,
Dad and Team 44

Forrest sitting up today for the first time in 5 weeks.

Grandma Norma reading with Forrest.

Grandma sporting her Team 44 pink shirt.

Good News!

While Forrest is holding his own and gathering his strength for his next comeback, we have great news to share!

Forrest and Austin have both been blessed with incredible teachers who have played a fundamental role in shaping their character and their values. Since Forrest was very young, Tom Sweitzer has been a mentor, coach and in many ways a pivotal life line for Forrest. On more than one occasion, Tom helped Forrest find his way when he was lost and confused. Now at this most critical time in Forrest's recovery, Tom is reaching out to Forrest again. Through his Music Therapy and his belief in Forrest, Tom is offering Forrest a beacon of light, a way to reconnect with his past and a way to create a bright future.

Through his work with Forrest, Tom was inspired to establish "The Team Forrest Music Therapy Fund" in Forrest's honor to provide Music Therapy to those who otherwise would not be able to afford it. We are dedicating the Team Forrest baseball caps to this fund. (The article will be on his website below on Monday). The hats will be available at A Place to Be, The Hill School, and Virginia Equine Imaging. We hope you will join us in thanking Tom for his crucial work with Forrest. And support his efforts to provide Music Therapy with others in need.

You can check out Tom's blog posting on October 4th to read about his work with Forrest or visit his web site (http://www.aplacetobefoundation.org) to learn more about Music Therapy and A Place to Be.

We are eternally grateful for the love, support and prayers we receive every day from friends like Tom,

Mum and

Team Forrest

Update: 8:30pm on 11/6

Forrest has been hanging in there in the intermediate care floor. We continue to try to balance the fluid production in his brain with the amount of drainage the shunt is allowing. The variables include the pressure setting on the shunt, the height of the head of the bed and production of cerebral-spinal fluid (CSF). As we have talked about before the rate of his drainage is very important and Dr. Armonda today talked to us about a plan to raise the shunt setting and get him sitting up more with the plan of returning to rehab soon.

Forrest continues to receive IV Antibiotics to control the infection that started this decline. His blood work is doing well and he continues to make slow improvement.

On the home front we continue improvements on the house that will let us manage Forrest in whatever ambulatory capability he can manage when the decision is made to bring him home. Austin made it home briefly with a couple of his friends and Dad got to cook for them. Mom made it home to briefly to oversee construction and see the hunt off. I will try to post one of the pictures Katherine Elgin took of Rae at the Orange County Hunt.

The videos and pictures and emails that his friends send are huge at this point. I know you guys are busy with school work and we do want you all to study and graduate. The high point of many of these long and tiring days for him are the videos and messages from friends. Even when he is down he can still manage a smile for his friends. Austin and Maylin make sure that he sees every one of them.

So our goal continues with all of us pulling together and getting 44 home, smiling, riding, watching football and visiting friends. Please continue to pull together to help us get there.

Dad and Team 44

Forrest smiling at messages from friends.

Update: Wednesday, 11/3/11

Forrest is still in ICU, he has been having a little trouble adjusting to the VP shunt, but he is doing better tonight. He even smiled and watched videos from friends this evening. We're hoping to move out of ICU and down to an intermediate unit tomorrow. We're including a picture below of Forrest and Maylin. We can't stress enough how thankful we are to have Maylin. She has a special way with Forrest, she cheers him up with her easy going personality and they really seem to click. She's really on par with the core team 44, watching his meds, helping turn him every two hours and making sure everything is just so. But more importantly, her good humor and awesome attitude really help lift Forrest's spirits. We and Forrest are so lucky to have her on the team.

Thanks all and have a great night,

Austin and Team 44

Maylin reading to Forrest

Update: 6:45pm on 10/31

Forrest had his sixth brain surgery today. He has done well with the procedure but continues in ICU tonight as they try to balance the flow of CSF (cerebral-spinal fluid). We are hopeful that this procedure will be his turning point on his road to recovery. This surgery is the placement of a ventriculo-peritoneal shunt. This is designed to replace the small machine previously placed under the skin that was removed when the cranial implant (the lid) became infected. This small undetectable device shunts fluid when a specified pressure is reached from his brain ventricle to his abdominal cavity (the peritoneum) to be reabsorbed. It is made of antibiotic impregnated tubing and he is still on intravenous antibiotics from the previous infection. Infection is a concern of this procedure and sterile surgical procedure is practiced. 

The pressures of CSF within his brain are of concern and the shunt operates within a range of  CSF pressures. The shunt can be adjusted up or down externally via a magnetic device depending on the pressures his brain is encountering. One of the challenges with Forrest has been adjusting the pressures just right so the ventricular fluid is not so high that it is driven into his brain and also so that it is not so low that it over drains and can injure the brain. So it is a balancing act to get it just right and then get him to adjust to it. 

The plan is to get him a CAT scan in the morning and see what size the ventricles appear and adjust accordingly. If he is doing well he will go to the intermediate care ward from ICU, which has been his home for the last two and one half weeks. Hopefully soon afterwards he will return to his National Rehab room which has been his home away from home for the last several months and return to his rehab work. The cranioplasty will not be replaced until sometime after the New Year to allow his immune system to recover from the infection as much as possible.

Mom, Austin, Maylin and Valerie Lee have been standing guard with Forrest today. Dad has gotten a cold and is temporarily on the bench for Team 44. I, like the rest of you are thinking and praying for Forrest right now as he struggles through this next hurdle. 

Dad and Team 44

Friday, 10/28/11

We apologize again for taking so long to update, we will get back in the groove but this week has been extra busy! Last weekend and the first part of this week were pretty rough. Wednesday night was especially difficult, Forrest's responsiveness had declined to the point where he wouldn't track us with his eyes and definitely wouldn't give us thumbs up or really any response at all. We met with his Attending yesterday and he helped lay out a plan. Give Team Forrest any plan and we are good to go, we will go out and tackle it. It's the stasis and waiting without a plan that we aren't good at.

We've begun to do small hourly drains of CSF, to reduce the amount of fluid in his ventricles, and that has seemed to help. He is more alert and tracking better since Thursday morning when we started. Yesterday he gave Maylin and the day nurse a thumbs up, and today he gave a brief smile while we watched the fan favorite, "Super Troopers." He's doing much better tracking and paying attention to what's going on in the room yesterday and today.

We're taking each day at a time, as always, and today was better than yesterday. Forrest received an amazing and blindingly bright gift from Karen and the rest of the Dolphin Quest Virginia office, a beautiful hand made blanket with lots of bright colors shown in the pictures below. It warms up the whole ICU room! Thank you so much!

As far as the next steps of the plan, the head Doc is looking at putting in another shunt (same model as last time) as early as this Monday. It will allow us to once again control the pressure in his head, the same role that the Extra Ventricular Drain(EVD) is playing now, but the EVD, because it is external, carries a greater risk of being a vector for infection to follow into his brain. Putting in the shunt again will allow us to remove the EVD. The plan is still evolving for when we would put the cranioplasty back on, likely several months, in order to increase the chance of avoiding yet another devastating infection. In the military, they often wait 6-12 months, but in his case, because it is such a massive craniotomy, we want to minimize the effects of atmospheric pressure pressing down on his brain that occurs when it doesn't have a skull or prosthesis to create normal pressures. But like we saw before, we can and WE WILL make progress without the prosthetic. Maybe even coming home by Thanksgiving or Christmas, but all plans are moving targets, as we well know.

Thanks for the comments, you all are amazing and cheer us up and keep us going every day! Here's a quote I came across, it's kinda whimsical. " If you aren't in over your head, how do you know how tall you are?"

Love,

Austin and Team 44

Rebekah and Forrest with hand made blanket from DQV

Forrest and I watching videos from his friends

Update: Sunday, 10/23/11

We apologize to our many wonderful followers for the lack of posts this week. It has been an incredibly difficult week and we just ran out of steam. But the truth is, we have come to depend on the blog too and your comments for our own sustenance. Your support, encouragement and prayers shared through this medium have become one of our most crucial lifelines.

Forrest had such a string of great days, milestones & celebrations the week before his latest setback, that this last infection & emergency surgery seemed unbearably cruel. Now we can see that without the benefit of that week's strong parameters, we would likely have missed the early warning signs of the brewing infection. While it has been a devastating setback, we still have much to be grateful for. To date all of the CSF samples have been sterile, suggesting that the infection was caught in time and did not reach his brain. The surgical removal of his second prosthesis and the intravenous antibiotics have been effective, his white cell count is down and he is not running a fever anymore. We have taken over responsibility for all his nutrition and he seems to be responding well to a more wholesome organic diet. We take turns making & delivering his four daily "smoothies" and the doctors & critical care nursing staff have embraced our somewhat unorthodox feeding plan. Today the neurosurgeons said our approach to his nutrition is the most important thing anyone can do right now to support his immune system & help him resist another life threatening infection. Of course the best thing we could do is get him out of the hospital and back to BrightWood. But this setback has dashed our hopes of an imminent homecoming, and we were SO excited about bringing Forrest home before Thanksgiving... I guess we'll just have to reschedule Thanksgiving this year!

Without a doubt, our greatest blessings are our devoted family and friends. Our support group is unrivaled. Austin and Maylin seem to possess a bottomless well of strength & youthful optimism. When Kent or I are overtaken by the black fog of a parent's emotional despair, the unbearable fear of not being able to protect our youngest child, Austin or Maylin step in, light a candle, and lead the way. Forrest's peers and our friends continue to bolster our spirits and our faith. The indomitable Mama Bear Task Force of Valerie, Shannon, Emily & Carina graciously & fearlessly filled my shoes this week, so that I could make a pivotal business meeting. And my dear sisters (blood & soul sisters alike) endlessly restore my faith when it falters and add clarity & conviction to a healthy whole and joyous vision of the future.

Last night Forrest was able to smile at my bedside antics attempting to dance with him and, ever the gentleman, did his best to offer his hand for another round. While his smile lit up my world, his most classic "Forrest" grins are reserved now for his friends' video messages. We play them again & again. Please keep them coming!

We don't know the new plan yet or even how long he will remain in ICU, but it will likely be several weeks. We do know we will do whatever it takes for as long as it takes to help Forrest win his battle. And we know that win he will. In the mean time, short visits from healthy friends are warmly welcomed. We miss our tribe, and can't tell you often enough how much we cherish each and every one of You.

With love from Team Forrest,

Mum

Update: Monday, 10/17/11

Forrest had a good day today, all considering. He was able to raise his hand to wave at his doctor, as well as waving feebly goodbye to me when I left. He was able to slowly give me our brother handshake! Everything is difficult for him, but he is in there trying and giving it all he's got, and that's the important part. He's a fighter and he's going to make it through. "It's always too early to give up." Medical difficulties remain as he is still in the ICU recovering from surgery. He is still fighting the infection, which hopefully the quick intervention and continued antibiotics will take care of. We are working on not losing all the great progress he was making before. We are trying to keep him supple and maintain his range of motion for his anticipated future return to therapy and recovery at National Rehab Hospital. He laughed and smiled watching your videos in the facebook group, thank you to all who contribute and to those who continue to post messages and videos. And thank you for the comments on the blog, they are heartwarming and encouraging. Mom, Dad, and Maylin continue to be amazing champions to Forrest and his recovery.

Love,

Austin & Team 44.

Update: 3:15pm on 10/15

Today we begin again.

Forrest's indomitable spirit is peeking through the post surgical fog and already he is winning the hearts of his Critical Care nurses. During his first breathing trial this morning when they turned the ventilator support off he quickly started breathing on his own amazing the respiratory therapist with his large tidal volume. The breathing tube was removed and he continues to breathe well on his own. When asked he will open his eyes and do his best to move his arms & wiggle his toes. We are settling back into the ICU routines that are all too familiar to us. Morning rounds with doctors residents & nurses, tracking every medication & treatment, repositioning every two hours, moving & massaging his arms & legs, watching the monitors & reading your wonderful messages aloud. Austin spent the night bedside & went with Forrest for a Cat Scan at 5:00 AM, reassuring him along the way. The results are encouraging, but of course only time will tell.

Many cultures & lab results are still pending and the plan will evolve over the next few days & weeks. For now we count our blessings. He is alive, he is able to understand us and knows that we are always by his side. We are eternally grateful for your unending love, prayers, encouragement, and most of all your belief in Forrest and confidence that he will heal, he will return to his home, his friends, his future. 

Last week was the best we have had since March. As I sit with you now Forrest, I see a quiet determination alive in your eyes. We will never give up, never surrender. No matter how long it takes or what obstacles we encounter. Together we will go over, under, around, or straight through them. We are still on our road home. We will get there and it will be all that we dream of.

Love,
Mum & Team 44

MaMa Bear + Sara's Bear keep Forrest company in ICU.

Update: Friday, 6:00pm, 10/14/11

It breaks my heart to tell you but Forrest has suffered another unimaginable setback. After several days of unexplainable decline, it was determined that his skull flap has become infected. As I write this he is undergoing emergency surgery to remove the shunt and the prosthetic flap. We are hoping and praying that the surgery is in time to prevent the infection from spreading to his brain. The doctors can't tell us a timeline or prognosis only that we'll have to take it one day at a time.

As he left the ICU for the OR, Ray LaMontagne was singing I Could Hold You Forever on his iPad. Please hold him again today in your thoughts & prayers. With your love and support he will eventually land on his size 12 feet & grace us all again with that lovable lopsided grin. Kent and I are waiting here for him to return from surgery and his brother Austin will stay with him tonight. 

We will update the blog after surgery tonight or in AM.

Shine on my Sunbeam, 
Forrest's Mum

Update: Thursday, 10/13/11

The last four days have taken a downward turn and we've just now had the time to update you all. Forrest has a suspected infection, we're still looking for the location and exact type of infection. It's taken the wind out of him, and after a fantastic week and weekend of progress (with consistent thumbs ups, as well as answering yes and no with both head nods and touching the ipad touchscreen), since Sunday night his responsiveness has greatly declined and he's been unable to use his hands and legs like before. The posturing returned today which is troubling. We've been running cultures and haven't found anything yet. He's going over to Washington Hospital Center in a few minutes for a Cat Scan and evaluation by neurosurgery. We need to rule out the possibility of a shunt or cerebral spinal fluid (CSF) infection, which is less likely this far out from surgery, but the shunt will likely need to be tapped to take samples of the CSF. They will decide after reviewing the CT if he needs to be admitted to the Neuroscience unit overnight at Washington Hospital Center, where he was before.

Despite it all he's still able to laugh at Anchorman and smile watching videos of his friends encouraging him and telling stories(keep them coming please!). With monumental effort he gave me an ever so small fistbump today. He's faced and overcome more difficult obstacles and he will overcome this one. Keep him in your prayers.

Love,

Austin and Team 44

Update: Sunday, 10/9/11

This nine month odyssey has taken our family to many strange and sometimes terrifying lands. It has alternately plunged us into physical, emotional and spiritual despair and catapulted us to unimaginable heights. We have been gradually stripped of all our defenses and are learning to live life fully in whatever the present moment brings us. Daily we continue to count our blessings. Some days, it has been a short, though powerful, list; Forest is alive, our family is intact and so there is still hope. This last week the list is bountiful. We have been blessed with a string of small triumphs, like a child's building blocks each accomplishment stacking one on another reaching to the sky. After months of waiting, praying and reaching out to Forrest, he is starting to respond to us, expressing his determination and revealing his own "unconquerable soul." After so many months of darkness, we are beginning to see Forrest Shine Again. Let me share a few of Forrest's triumphs this week.

On Monday, his speech therapist was trying to determine if Forrest could read. She took two items a Mercersburg lacrosse glove and a pen, wrote both words on the white board and placed the items on his wheel chair tray. Then she pointed to the word "glove" and asked Forrest to point to it. He obliged her, stretching his shaking hand toward the glove! After a couple of repeat trials with different items to confirm his ability to read, Forrest tired of the exercise and reached instead to take the marker from her hand. Previously, every time he has tried to get a marker to the whiteboard to make a mark, his hand shook so hard that he couldn't get the marker near the board. This time he had the strength to push through the tremors and drew a long green wavering line across the board. The therapist was ecstatic. She took another marker and printed "FORREST" across the top of the white board. "Come on Forrest, lets write your name." She shaped a dotted "F" for him to trace and placed her hand over his to help steady his hand and trace the letter. Forrest had his own plan. He slowly shifted his trembling hand to the right and began to shape his own "F"." Then he made two more squiggly "F"s. That's our Forrest!

On Thursday Austin came to visit his brother, having stayed away as long as he could to get over his cold. It warmed my Mother's Heart to see them together again. Over the past six months, Austin has spent endless hours coaching Forrest, holding his brother's hand in his to form the shapes of their secret Brother's handshake and pretending to thumb wrestle over and over again. At last, the memory surfaced AND Forrest was strong enough to reward all of Austin's efforts with an animated rendition of their brother's handshake and a genuine thumb wrestle. The love and trust which has grown even more powerful and true between our sons is a magical thing to witness.

On Friday, a group of 20 students came to watch Forrest work with his therapist. We gave permission with the understanding that if this large group seemed to add any additional stress to Forrest's effort's they would leave the gym. As Forrest approached the double glass doors into the gym, we could glimpse the large group gathered there. The therapist opened the doors and all eyes shifted to Forrest. There was the slightest hesitation, then slowly Forrest reached down for the first time and wrapped his trembling hands around the wheels and began to propel himself into the gym. His therapist face lit up and he waited patiently as Forrest wheeled himself forward inch by inch into the room. The set of his jaw clearly communicating, "Bring it on." It was exhilarating to watch this session and to see that Forrest can still command an audience.

Friday was a pivotal day for Forrest. With two therapists escorting us, Forrest made his first "outing," his first trip (that wasn't an ambulance transfer) outside of a hospital since March. We journeyed in an NRH wheelchair access van to the National Aquarium in DC. Austin has been volunteering there 2 Sundays a month and had all the logistics worked out for his brother's visit. We were graciously received by the Director and Curator and Forrest clearly enjoyed the marine life and the simple pleasure of breathing outside of a hospital for a couple of hours. It gave us all a greatly appreciated break from the hospital routines that have become our daily lives.

Friday night brought yet another first. With his Dad's coaching Forrest caught the nerf football. Though his left hand is still tightly clenched, he is gradually regaining more control of his right. With dogged determination and three tries, he was able to release the ball as his arm extended and toss it back to his Dad. The whooping and hollering that erupted in the room would have rivaled a Redskins touchdown! Today is Kent's Birthday, and I'm sure that throw was the best gift Forrest could have given his amazing "Pops."

Kent, Austin, and Maylin will be carrying the Team Forrest Flag this week, as I head out tonight for a business meeting. It's difficult to be away even for a few days, but I know you're in the best hands imaginable, Forrest. And your friends still keep you in their thoughts and prayers. Their visits, messages and videos are an increasingly critical link to your past and your future.

Thanks to the Woffords, Tom, Sally Pont, John & Jacob, Corina, and Jay for your visits. You added so much energy and enthusiasm to our week. And hugs to my family and Girlfriends who keep me afloat.

With love,

Mum

Writing with his Speech Therapist

Success!

Off to the aquarium!

Forrest picturing himself back underwater diving again

The wonderful National Aquarium aquarists showing him a 1 year old Loggerhead turtle

Dolphin Quest Bermuda

Throughout our journey we have been blessed with such incredible support and encouragement from our families, friends, community and colleagues. Last Sunday, our Dolphin Quest Bermuda community embraced Forrest's cause in the most amazing way. They partnered with the National Maritime Museum to host a fundraising event (featuring a dolphin show, bake sale, and raffle) to raise money for WindReach Bermuda in Forrest's honor. WindReach's mission is to enrich the quality of lives of people with special needs. Like NRH in Washington, DC, WindReach provides adaptive sports programs for children and adults in Bermuda so that they might have opportunities to participate in a variety of sports and activities. For more information, their web site is www.windreachbermuda.bm.

More than 300 people turned out for the festivities and the Dolphin Quest Bermuda event raised $5,434 for WindReach! Forrest sat in his wheel chair at NRH on Sunday and via skype watched the entire show. We were all deeply touched by the generosity and kindness of our DQB Crew Members and the enthusiasm of the entire community for this important cause. At the end of the performance, Forrest rallied and gave the DQB Crew his trademark thumbs up.

We continue to be impressed with Forrest's daily efforts. And we know that he is impressed that in the last month you (his friends, supporters and fans) have raised over $10,000 for adaptive sports programs. And that's in addition to your generous donations to Shepherd and UVA TBI programs. Forrest continues to be a role model and a mentor to many of us, who previously had no comprehension of the impact that traumatic brain injury has on individuals, their families, friends and communities.

Although we sometimes struggle with our evolving role as Team Forrest, we continue to embrace it, and with your support we know beyond a shadow of any doubt, that Forrest will prevail.

With boundless love and gratitude,

Mum and Team Forrest

Kelsie, an 18 year old adaptive sports athlete, enjoys working with dolphin behaviorist Krysta and meeting Ely during the fundraiser!

Update: Tuesday, 10/4/11

Intro for tonight's blog: Forrest has had a good few days, Mom has been his champion and protector as always while I've been sick. She wanted to fill you all in on his progress in her own update soon. Tonight's blog is by one of Forrest's past teachers, Tom Sweitzer, who taught Forrest acting and music at Hill School. He's been an amazing mentor and friend to Forrest for many years. He's been working with Forrest providing Music Therapy and his recollection below is powerful and speaks to the valiant strides Forrest is making every day.

Love,

Austin

From Tom:

When you have taught a person throughout their whole childhood you look into the eyes of this now adult and still can see that little child. This last Sunday in the eyes of Forrest I saw the boy I taught many years ago and the man emerging through this tragic scenario.

As a Music Therapist we clinically look into how music can help a person with physical, mental, emotional and spiritual needs. This last Sunday we worked on helping Forrest find his breath by using a recorder, an instrument he handled at least a couple hundred times at Hill School. With limited ability to move his hands, and arms I assisted him by holding the instrument, talking him through his breath and then with permission from Rae to actually assert pressure on his chin to help him unclench his jaw allowing space for the recorder to sit between his lips. For at least 10 minutes we tried to get a sound from the recorder, and then toward the end of the session there was this moment.

This moment where the MAN came to the surface and that athlete, that actor, that lady’s man said to me without words, “Enough! I got it.” I rolled myself away from the wheelchair and allowed him to take over. Together Rae, Kent and myself witnessed a slow shaking hand taking the recorder lifting it up to his own lips, lowering his lower lip just enough to put the instrument in his mouth and then a breath through his nose was heard and then 1…2…3…4..Small, faint musical pitches were heard, then one more. He slowly put the recorder down and we all cheered.

What is hard to see sometimes with TBI is there is a full person in there. Music is not only the Universal language, but also a form of communication that reaches into places that words cannot. This little triumph is as big as a planet. It reminds us that Forrest is running and playing inside. He is climbing a mountain that is very big, but through the most loving family and friends and now perhaps a little music he’s getting closer to the summit – HOME.

This November A Place To BE Music Therapy in Middleburg will honor Forrest’s fight for life. We will be selling Team Forrest Hats and will have special displays at our center reminding us that he’s still out there preparing for the next part of his life. More information to come.

I am honored to be a part of this child’s life and to witness a Mother, Father and Brother who exemplify compassion, patience, love and FAMILY.

Love,
Tom Sweitzer

Forrest taking the recorder to use by himself

Forrest playing the xylophone with Tom