Update: 11:00pm on 5/29

Forrest Stone Allen has had a rough couple days. He's been very unresponsive and is arching his back and tremoring many hours during the day. We're doing our best to keep him calm by talking to him, rubbing his muscles, and adjusting medication with the doctors. We're unsure of the cause of these tremors he's been fighting the last couple of months since the cranioplasty. But the posturing(extreme arching of his back for long periods of time) is relatively new within the last couple of weeks. Occasionally, he's able to raise a finger or squeeze a hand in response to a question, so we're holding onto the small things. We're hoping the doctors here at Shepherd can help him and that the Doctors at UVA can help us find a long term solution.

Thank you for keeping him in your thoughts and prayers. We will continue to keep you updated.

Love,

Austin

Update: 7:45pm on 5/27

Forrest is out of ICU and back in his usual room in Shepherd's ABI unit. It's not evident what infection caused his collapse, but the diagnostic tests have ruled out a number of serious conditions. As his Doctor explained today, severe TBI patients have very little reserve in their weakened state, and even an every day viral infection can set them back. He is still only occasionally able to respond to us and its hard for him to open his eyes. Earlier today when Mom asked if he wanted to go back to VA, he did his best to give a thumbs up.

On a positive note, Forrest was accepted by one of UVA's neurosurgeons, the same Doctor who initially did his craniectomy and saved his life. Once he's strong enough, he will likely have more surgery, though there are a number of diagnostics that need to occur first. His doctors at Shepherd Center believe that at this stage it will be difficult for him to sustain any lasting progress in therapy until we resolve the hydrodynamic challenges affecting his brain, which requires the replacement of his skull flap. We are hoping to move Forrest via air ambulance to UVA next week. We are looking forward to getting closer to home where Dad can be with us more often and when he is ready, Forrest will be able to have more visits from his amazing friends.

Right now is definitely another low point, but we shouldn't forget that we're only 4 1/2 months in. The largest gains often occur within 1 to 1 1/2 years post injury. A lot of great things are still waiting to happen. Although sometimes its hard, we can't let ourselves look down or behind us, we have to look forward towards the horizon and our goal. Aunt Trish is standing guard with Forrest as Mom and I write this together. Tricia is amazing, supporting Forrest and us in every way possible. Sundance seems to have picked a new favorite too, won over by Trish's "happy talk" and upbeat attitude. She's really given us all a much needed lift, and she helps Mom remember to breathe, especially during the dark moments.

Love,

Austin and Mum

Update: 12:00am on 5/26

Well…Forrest you gave us a bit of a scare today.

You had a morning that started off bad and got worse quickly. You were running a fever, then vomited your meds up, were excessively lethargic, and your mom saw the change in your skull cavity. Doctors were called, vitals taken and your mom correctly insisted these were signs that were all quickly changing for the worse. You were moved upstairs to ICU were they gave you IV fluids, and took blood for labs. Lab work showed you had an infection so they started antibiotics and we waited for more tests to be run. Your CT scan showed some changes. So we waited for more consultations and labs. While we waited, you and I spent time together and you started responding to my voice, turning your head to look at me, you gave me a shaky peace sign and we slowly passed the small rubber ball back and forth. You were shaky and trying to work through the tremors, you were slow, but deliberate on how you handled the ball. So at that point I felt like I could breathe again, and only realized then that I had been almost holding my breath since Rae called me to say come quick they are taking him to ICU. Forrest, you are so strong and determined, this is just another damn detour on our way to get you home.

We will meet with the docs in the early morning to review more labs and see how you did during the night. Your Mom and Dad will have a conference call with some more doctors tomorrow to see what the next plan is for you. Tonight rest easy and sleep dreams of rolling hills, tall grasses waving in the breeze, that beautiful horizon from your back porch, Sundance trotting by you and friends and family encircling you with the power of love.

Love Aunt Tricia and team 44

Reading posts from his facebook wall and Friends of Forrest facebook group

Update: 10:00pm on 5/21

It's been a busy couple of days without Mom. Aunt Tricia and I didn't realize how much we missed Mom and how much she does every day until she flew back to VA on Thursday. She went into DC and Baltimore to look at two rehab centers as possibilities for the next phase. Forrest missed her as well. Forrest is getting a little stronger, holding himself up for longer periods and moving his limbs a bit more. He's still having a lot of trouble with back pain, tremors, speaking, and swallowing. He's definitely in there, he's never, ever, stopped trying, no matter how difficult it is for him to hold his head up or answer "yes." We're glad Mom returned tonight, hopefully seeing her tomorrow will help him eat successfully again.

Love,

Austin

Forrest soaking up the love of the May 7th community photo taken at the Hill School for him. The cards held up in the picture spell "We Love you Forrest"

Update: 10:50pm on 5/17

Fellow Fans of Forrest,

After a long line to get through security at Baltimore Washington International Airport and a heated debate with TSA over whether or not lacrosse sticks should be allowed through security, I made it down to see Forrest on Sunday morning. The past few days have been great. Although Forrest has experienced a setback from his usual self, his courage and desire to win this battle is consistent with the competitive Forrest we all know.

After getting down here on Sunday morning I went over to Shepherd to see Dr. Stone, Austin and Forrest after he had some breakfast. Forrest cracked a smile for me when I saw him and we went down to the garden to catch some fresh air and stretch. We hung a poster from the U.S. Naval Academy Men's Lacrosse Team who learned of Forrest's recovery and sent me down with a poster signed by all the seniors to cheer him on. On Sunday's here at Shepherd, Dr. Stone and Austin are the active physical therapists, keeping Forrest working and limber for his regular week-day therapy sessions. I also got to meet Sundance, Forrest's therapy-certified dog, who I am convinced is Forrest's secret weapon for leaving Shepherd with a few nurses. We spent the rest of Sunday telling some Mercersburg stories and talking about all of Forrest's "bros," who I know are missing their leader but patient for his return in due time.

Yesterday was choc full of activities. Forrest's morning was busy with therapy, stretching, and some serious bro time (we watched lax!). Before lunch, Forrest stood up with me for a few minutes and he cracked another smile, probably because he realized he's grown another 3 inches since he last saw me. While he was getting some rest, I worked on putting together a Mercersburg poster for his wall. I found some great pictures of his crew from Mercersburg and left space open so that friends can mail him some of their favorite photos with him. Austin also worked with Forrest on his handshake and fist bump. I've been asking Forrest each day to give me a fist bump and each day it has been getting more powerful, a sign that he is just as pumped about his recovery as his family and friends are.

Staying in touch with friends is crucial to Forrest's recovery. Seeing friendly faces and hearing the voices of the people he has grown up with is both comforting and crucially important to him as he will soon be reconnecting with those friends and neighbors. While we go about our daily routines, it is important to remember that Forrest is working hard to regain his mobility and cognition, and providing our support for him reminds him that we will be there for him when he is ready. We were able to get Pete Flanagan, Forrest's roomate at Mercersburg on the phone last night and hearing a familiar voice was obviously comforting for him. As Mr. Hurley, a friend of Forrest and Team 44 said today, "we spend so much time thinking of ourselves every day that it is important to take time each day to think of others." That statement hit hard for me and it re-enforced the fact that Forrest's recovery can be actively helped everyday by his fans at home and at school who are proud of his progress and determination. His recovery is incredible, harnessing the desire to succeed in a tough circumstance is difficult for anyone, but Forrest does it with grit and consistency. I encourage friends, bros, and teammates alike to stay in touch with Forrest as much as possible during this time of the year when some of us are graduating, starting our summers, and beginning a new chapter in our lives. Because even though we are experiencing these transitions, our friendship, devotion, and love for Forrest is steadfast.

Love,

Danny

Forrest and Danny

Update: 10:30pm on 5/16

Sorry to be out of touch this week with just Austin and Mum here, every waking hour has been busy. It's hard to believe it's been four months this week-end since Forrest's accident. Four months spent living in four hospitals can take its toll… Fortunately, we are blessed with an amazing, supporting cast of devoted family members, friends and colleagues. And each day Forrest lights up our world with his courage, tenacity and determination. This week the speech therapist used electrical stimulation to help him strengthen his ability to swallow. Even though having the electrical impulses on his throat was uncomfortable he indicated by touching the yes sign to keep going. After several sessions, with much effort, he is able to swallow a few spoon fulls of pudding-like consistency! So, we are bringing organic vegetable and fruit juices in to thicken and feed him. (Don't tell, but Mum's been slipping the organic green juice in his feeding tube for the last week…) The treatment also seems to be improving his vocal cords. He has been able to say a few more words which is such a huge relief. There was growing concern that there was significant damage to his vocal cords caused by the endotracheal tube that was in his wind pipe for so long. He still struggles to find his voice and his words. He rarely is able to communicate verbally, but we know he can speak. As we say in Team Forrest, "we can work with that."

We are reminded that there are lots of ways to communicate. Today, I wanted to get Forrest back to bed from his wheel chair, but the nurses and techs were all tied up. I've been "cleared" to transfer Forrest, but he is so tall and so unbalanced on his heavy casts that I haven't attempted it by myself. He was in a lot of pain and needed to lie down, so I decided to go for it. I got all the belts and leg braces undone, organized the tubes, aligned the chair just so with the bed, made sure the brakes on the chair were on, double checked his helmet, tightened his stabilizing waist belt, got his attention, looked him straight in the eye and explained it was just him and Mum so I'm counting on his help. "Okay, Forrest, on three. One…two…THREE." Up he came out of the wheel chair, towering over me. With the casts adding to his height and the fact that his tendons are so contracted that he is balancing on his toes, he must be 6'7”. OMG I've got my arms around him, but can I keep him balanced and pivot him 90 degrees so that he can sit on the bed? I am frantic. I crank my head back and ask him to put his hands on my shoulders so we can turn. Instead he calmly places his left hand on my head and gently strokes my hair. Okay, I hear you Forrest. Breathe. We stand there for 2 or 3 minutes, letting his tendons stretch. Finding our Balance. Reconnecting. Now we can pivot and slowly lower all his height safely to the bed.

This is not the journey any of us would have chosen. And I ache for Forrest's losses. But we are blessed daily in many ways. I never would have had so much time with both of my boys. Some of the time is painful, much of it is very hard. But all of it is special. I am forever grateful for Austin's strength, his devotion to his brother, his character and his love. I love them both beyond all measure and I want them both to have the opportunity to live their lives with passion, purpose and great joy.

With love,

Mum

Electrical stimulation to strengthen swallowing and vocalization

Cousin Troy and Austin helping with his walking

Danny Quinn, Forrest's friend from Mercersburg Academy, took leave from the Naval Academy to visit this weekend

Update: 11:45pm on 5/10

I went home this past weekend and it was great to return to beautiful green hunt country and see the farm, friends, and Middleburg. Definitely the most touching and heart warming moment was Saturday morning when an incredible group of people gathered at the Hill School for one purpose: to show their support for Forrest's recovery. The Nettere's organized the gathering, and I was fortunate enough to be able to be home and represent the family at it. I can't begin to express how much it meant to me to hug and talk to everyone. Everyone wants to see Forrest back in Middleburg, and he's making his way back to us, one hard won step in front of another. Not everyone who wanted to show their support was able to make it on a busy weekend morning, but it was amazing to see such an outpouring of generosity regardless.

Returning to Atlanta on Sunday, I was greeted with some positive news. Forrest has been communicating more. Although he is still plagued by persistent and intense "storming" episodes, he has become much more purposeful and able to communicate. His arms and hands are becoming more mobile, he even put on his own deodorant in bed when asked to tonight. Apparently he's been vocalizing a little bit, and I finally heard it myself today. During his assisted walking (on a modified standing walker) at physical therapy today, after pausing for a break, his therapist asked him if he was able to finish the rest of the walk, and he stoically whispered "yea" before shaking and fighting his way to the end of the hall.

Mom and Dad were watching him in Atlanta this weekend, but they both wanted me to express for them how much the photo and gathering meant to them. Like the blog comments, calls, cards, and countless other things Team Forrest members have done, Saturday's gathering warms our hearts thinking about all those who are keeping Forrest in their daily thoughts.

Love to you all,

Austin

Saturday's photo of support for Forrest at the Hill School!

Update: 10:00pm on 5/7

Forrest wrestled with his demons yesterday and although it was difficult he won more battles.  He whispered a few words to his speech therapist," I'm alright", the first words anyone's heard in one or two months.  With the aid of his therapist's and a upright walker he walked a few steps, the first he has done in two months.  It was exhausting in his heavy casts on his legs but he made progress.

He is still struggling thru his storms and tremors and sometimes sweating profusely.  He is still being fed thru the stomach tube inserted near his belly button.  He is working on swallowing ice and thicker fluids but while he is improving they are still a struggle.  Some days the margin between exhilaration and despair is very thin.

His dog Sundance, now a certified Therapy Dog, visited him and interacted some. It was a great moment but Forrest was very tired at the end of the day. Sundance decided it was worth the 11 hour trip down just to cuddle up next to Forrest and get a head pat and have Forrest drop a ball for him.

So Sundance and I watch him doze off and I read him some Winnie the Pooh, still a favorite of ours and we hope he has a quiet night.

Dad, Sundance and Team 44

"No sense wishing for what we had, the past is already gone. Let us instead hope for what may be, for tomorrow anything is possible."

Sundance joins Forrest for a session with his therapist.

Forrest dropping a toy for Sundance.

Working with the therapist to learn to make sounds and talk again.

Update: 9:30am on 5/6

Good morning Forrest! As one of your faithful bloggers reminded us recently, today is the first day of the rest of our lives. It may not be the life we had planned, but with hard work & help from a lot of incredible friends, it is going to be a wonderful life. Let me show you some of your hard work. I'll let your friends tell you their story later.

With love & gratitude for this beautiful day,
Mum & Team Forrest

You are learning to use a computer designed for Augmentative or Alternative Communication (ACC) so that you will be able to communicate until you regain your voice.

 

We work together on to regain control of your hands so that you will soon be able talk to us through the AAC.

With help you work on sitting & balance.

The hard work pays off & You sit up on your own!

For hours & hours you work with your speech therapist to practice swallowing and regain your voice.  We can't wait to get you back on "real" food & to hear your voice again!

Update:11:00pm on 5/3

The love and support we have felt from our community so very far away continues to amaze and inspire us.  Our great friend Julie Nettere is organizing a photo shoot to create a picture (worth more than a million words) of Forrest's friends and supporters cheering for him back home. The timing couldn't be more powerful, as we had all hoped to bring Forrest home by this weekend...we'll just have to set a new date.

In the meantime, we can't wait to hang this photo where he will see all the reasons to keep working hard each day on our path back home... see the full the scoop from Julie below.

With love beyond measure,
Team Forrest

Smiling faces for Forrest!!

We are spreading the word of a community photo shoot to be done for Forrest and in support of Team  Forrest at the Hill School this Saturday, May 7th, at 10am SHARP. It will be in the outdoor amphitheatre which is south east of the gym. Enter off of Landmark School Rd at the top of the hill. Extra parking is next to the gym. The goal is to share with Forrest the faces of so many people who are wishing him well!

What a wonderful spot to take the photo and bring back Hill School memories for Forrest including helping to plant some of the trees surrounding the amphitheatre. He was involved in that activity more than six years ago! There is also a second location available after the Highland Junior class SAT/AP exams. For details please contact Sean McGuiness or Highland classmates. If there are other remote  locations, please include a guest list and email the photos to Austin at a.asalle@gmail.com!

HOPE TO SEE LOTS OF SMILING FACES FOR FORREST ON SATURDAY at the HILL SCHOOL-
Julie, Eric, Oli, and Izzy Nettere

Forrest napping in Shepherd's Secret Garden, most likely dreaming of home...

Update: 10:00pm on 5/1

Two of Forrest's close friends from home flew down to visit him this weekend. It was great to see them and he seemed to make progress while they were here. This update is from them:

On Saturday morning we came into Forrest's room to be surprised that he peeled his eyes away from the Bucknell v. Lehigh lacrosse game to make eye contact with us. We sat with him and Rae until he went off to speech therapy. We then decorated his room with all the wonderful pictures, posters, and art that his friends and family have been sending him. After his speech therapy we went to the gym with Forrest and Rae, while Austin got his fro cut. Knowing that Forrest had not smiled since his setback, we were doing our best to make him smile. When Forrest dozed off a bit, we spoke to him about summer memories, and as soon as we mentioned that he would be home soon playing with Sundance, his yellow lab, his eyes opened wide and a smile came across his face. It was great to see Forrest smile, his first in a long time! For physical therapy, we stretched out his legs, arms, and neck muscles. Forrest has had some problems keeping his head straight, and so Rae massaged his neck to loosen his tight muscles, as we held up pictures and told him stories from back home and from growing up.

After his quick nap, we took Forrest out to the garden to catch some rays; it was an absolutely perfect day. While there, we worked on his hand-eye coordination. While he is much more mobile with his arms and legs than even a week before, his movements are still slow and difficult. Every purposeful movement is a monumental challenge, but Forrest is incredibly strong and determined. He was able to pass rings back and forth and hand them to each of us. While Forrest took another nap, we (Rae, Austin, Sarah, and Madison) went to the beautiful Piedmont Park for a walk, which we set as a goal for Forrest to visit when he is up and running again. When we came back to the hospital to check on him, Austin asked Forrest if he was happy to see us, and held up a YES and a NO card. Forrest slowly pointed toward the yes card, which obviously put a smile on our faces. We later asked if he was in pain during a "storm," and held up the cards, but he fought through the storm to point to the yes card. We stayed with him watching “Deadliest Catch” until the storms passed and he was relaxed and sleeping.

This morning, we said our goodbyes to Forrest. After a big group hug with Forrest and Rodney, one of Forrest's favorite nurses, multiple fist-bumps, and individual hugs where he was able to put his arms around us, we said goodbye. It was so great to spend time with Forrest and watch and help him progress though his long journey back home and to all of us.

With Love,

Sarah and Madison

In the Shepherd garden catching some rays

Sarah and Madi with Forrest!