Update: 11:30pm on 7/30

Forrest remains in ICU. I'm watching him tonight, he's sleeping quietly as I write this. Overall he is doing well. He had a restful night last night, and was pretty alert for the nurses when they did periodic neurological evaluations.

Earlier today we had a brief scare when it looked like he lost some pressure in his skull. The area where the bifrontal craniotomy in January was noticeably more sunken than earlier this morning. He was slightly less responsive. This is reminiscent of the crash he had in late May, so obviously we were quite concerned. The programmable shunt was readjusted and he was declined in the bed to reduce fluid loss from the head. It's seemed to re-inflate and he's doing better. The head surgeon will re-evaluate him in the morning and we will go from there and hopefully get him started on food again.

Thanks for all the well wishes, keep him in your thoughts,

Austin and Team 44

Update: 4:45pm on 7/29

Forrest is out of surgery! We spoke with the surgeon, who said the procedure went well, and he is hopeful that that the shunt will help with all aspects of his recovery. He also said the intubation and every part of the shunt placement went smoothly. Forrest is still waking up from the anesthesia in post-op, after which he will be moved up to Neuro ICU for the night and monitored closely. Thanks for all the prayers and well wishes, they surely helped.

Love from Austin and the Team

Update: 4:45pm on 7/28 SURGERY

Forrest has been developing another complication over the last few weeks. With MRIs we have been tracking the increasing volume of CSF in and around his brain. The most recent MRI confirms that the large volume of CSF is beginning to have a dangerous impact on his brain. We have been meeting with the top TBI neurosurgeons in the country and are confident that their plan will prevent further damage and give Forrest the fighting chance he so desperately needs.

Tomorrow at Washington Hospital center, he will have an operation to place a ventricular shunt into the brain ventricles with a tiny programable pump that will slowly and continuously drain the extra CSF away from his brain. We are hopeful that this procedure will lessen many of his most difficult symptoms and allow him to regain his recovery and reclaim his life. He will remain in Neuro ICU over the week-end and hopefully be back at NRH Monday.

Once he recovers from this surgery (his fourth) he will have another 4-6 weeks of therapy before he can be medically cleared for the major surgery which will include replacing his skull flap. But we are very fortunate to have a plan, talented and skilled surgical and nursing teams, and a base of support much closer to home. And most importantly we are blessed with Austin's strength and Forrest's smile to light the way. We are so grateful for your unfailing belief in Forrest, for your continued prayers, positive healing energy, personal visits, cards, letters and blog posts. Your encouragement and support is literally life sustaining oxygen to Forrest and his Team. Without it we simply could not breathe.

Please keep Forrest in your thoughts and prayers this weekend. We will let you know when he is safely through this surgery.

With love and gratitude,

Mom and Team 44

Update: 11:30pm on 7/27

Today, we have amazing news to report to Team Forrest.

It started this afternoon with Mom throwing a beanbag football at me fast cause I said something sarcastic, I can't remember what. I threw it back, then she threw it back harder and knocked over a plant on the shelf behind me. We both turned and looked at Forrest to see him... smiling!!! His mouth was upturned in that characteristic Forrest grin. I got up, gave the ball to Mom, and when she threw it at me I pretended to get knocked down and jumped on the ground. We looked over to see him chuckle!! It was a beautiful sound!!! Mom and I started jumping up and down in joy like idiots and we both gave him big hugs and laughed with him.

It was so heartwarming it's hard to put it in words. It was so good to see him smile. It's his first smile since May 24th. It was, how would Forrest put it... EPIC. He's in there and he understands much more than he can express right now. We can't wait to see it again, I'm going to start watching the Three Stooges to get ideas to make him laugh.

All the best to Team 44,

Austin and Mom

Forrest standing tall

Update: 11:00am on 7/26

Hi Team,

Forrest has been working hard in therapy this week. He stood up in a walker for 5 minutes yesterday and has been tolerating 2-3 hours of sitting in his wheelchair each day, which is terrific. We're still working on beating the C. Diff infection that is incredibly persistent and is not only irritating his gut but also keeping him in his room on isolation protocol.

We had some great visits from Forrest's friends this weekend, including the Selfes (I forgot to take a picture, next time!) and the Weinstein-Bacal's! Sundance was able to make an appearance too. We hope some friends will be able to visit this weekend, it's a great boost to us as well as him! Please contact Nick Weeden or Gio DeSantis, their information is on the "Visitors" update on the right side of the blog.

All the best,

Austin and Team 44

Sarah and the Weinstein-Bacal's with Forrest

Sarah & Forrest

The Family (note Sundance's expression!)

Update: 3:00pm on 7/22

Today's update is beautifully written by Whitney, but first I will give a short intro. Forrest continues to work hard in therapy. Unfortunately he continues to be less responsive overall, a trend that has emerged over the last few weeks. We're continuing to meet with doctors to try to determine when it is possible to undertake the next and hopefully final surgeries that will allow Forrest to make progress AND hold onto progress. It's important to note that Forrest's BEST days the last month have been when Mr. Northrup, Mr. Sweitzer, and Forrest's friends have visited. We hope his friends will continue to visit, inspire, and motivate Forrest to get better, as they do so well!

-Love, Austin

Motivation and momentum. Those are the two words that I have heard most during my time with Forrest.

My name is Whitney Weeden, and I am a friend of Forrest and the Allens. I have been fortunate enough to have time this summer to help with Forrest’s recovery, and I wanted to share some stories about my time with him.

Motivation. The first day I came to visit Forrest, I was thrown into the therapy right away because “Forrest would probably respond better to a familiar girl more than he would to a therapist.” Sure enough, Forrest was swallowing, grabbing the ball, and squeezing my hand every time we asked him to. I’m not sure what I was expecting, but this exceeded any expectations that I did have. Forrest is still Forrest. Being sick for this long would dishearten anyone, and it’s the friends, family, and positive support that are so important in motivating Forrest to continue to work hard and fight for that recovery.

Momentum. One day, I was talking to Forrest about how important it is for him to work hard to get over this hump and continue full speed ahead to a full recovery. My attempt at an inspirational speech was interrupted by a physical therapist coming in to work with Forrest. This session was the hardest I have ever seen Forrest work, and I’d like to think it was my words that helped motivate him. He was following a ball around the room with his eyes, playing with his lacrosse stick, and pushing a ball toward me. I know he can hear what we are saying to him, and he is trying his hardest to get that momentum going again.

Motivation and momentum are primarily spurred by Austin and Rae throughout Forrest’s whole recovery. Watching Austin and Rae interact with Forrest is truly unbelievable. I know this has been said before in the blog, but I would just like to reiterate how amazing they are with him. Austin is constantly adjusting Forrest so that he is as comfortable as possible. He chats with Forrest about anything and everything to keep him relaxed and positive. Rae lights up the room when she walks in. After seven hours of sleep the past two nights --combined!-- Rae gets back from her business trip and is as positive and inspiring as ever. Forrest is visibly more relaxed when he is around these two inspirational people.

Forrest makes it clear that he is working hard to get better when he shakes your hand or reaches for a ball or even just locks eyes with you. He has always been an amazing person who works hard for what he wants. In this case, he wants to recover.

-Whitney

Whitney helping Forrest with a spoonful of honey-water during Speech Therapy

Mom's Back! Helping with Occupational Therapy today

Update: 10:30pm on 7/14

From Austin:

Today, July 14th, marks a symbolically important moment in Forrest's life and the lives of the friends and family of Team 44. Exactly six months ago, Forrest's life was stopped in its tracks and set on a different and challenging course. He's made great strides since then and has also suffered a myriad of harrowing setbacks. He's fought hard and gotten beaten down again and again. Yet despite all the setbacks and complications, he's never stopped fighting, and each day Forrest and his team begin with the same determination and purpose as the day before, envisioning the future we will create; Forrest back home among friends and family. No one has suffered more, nor worked harder, than Forrest. It's that fight inside him that will bring him back.

As brothers, we wrestled a lot, and every time I wrestled with Forrest, often until we were both grass stained and bruised but still laughing, he would give it every thing he had, often until I gave up. I know that with his inner determination, along with hard work, great friends, and time... he will be back, however long it takes. The last six months is just one chapter in the uplifting story that will be told of Forrest's recovery.

From Aunt Lynn:

It's been good to see Forrest and the Team again. Especially since he is looking better! I could really tell he had gained some weight. We are all doing our best to give Forrest plenty of support with Mom gone on a business trip. She is not easily replaced but Forrest is a Champ as we know, so he is hanging right in there. We did take videos of her before she left so those get played to him. He is doing really well with the changes. We've been able to host a few visitors also: his classmate from Hill, Corina and her mom came on Saturday. And Mr. Northrup and Mr. Sweitzer from Hill School were able to stop by on Sunday. Although it is a challenge, Forrest rallied with some hand squeezes and fist bumps. His eye contact showed that he enjoyed hearing the news from the home front. Thank you to all the thoughtful visitors.

Monday was a great day of therapy. Forrest stood three times for 5 minutes each time, which demonstrates some great progress. He also made some progress with speech therapy. Whitney Weeden helped out a lot and actually contributed to Forrest making great strides during speech therapy on Monday. Tuesday was a rough day. He threw up a couple of times, and it may be related to his past GI issues or may be related to a new medication that was started on Tuesday and since been stopped. Wednesday was a bit quieter. Today was OK, and Forrest, Dad, and Austin met with a Neurosurgeon for a consult today. During the meeting they continued to work on the plan to get Forrest's skull flap back on, which may still take several months due to blood clotting issues. Lastly, at the end of today my daughter Lisa was able to stop by and visit with Forrest.

So we head into the weekend and next week look forward to the therapy sessions and other things that will help Forrest continue to grow stronger. Patience and determination are two of our favorite words! We miss you mum, but you have trained us well so carry on with no worries! Team 44 is doing fine and The Champ is hanging tough.

Forrest and two amazing mentors to Forrest, Austin, and many Hill alumni.

Mr Northrup & Mr. Sweitzer lift our spirits

Corina and Forrest

Forrest standing up on Monday with Dad and his physical therapist

Forrest with his new helmet and his room decorations

Update: 3:20pm on 6/10

Hey Forrest, it's your Mum. I write mostly to you in our daily journals, and a lot of what I write is just between us. But the blog is a crucial lifeline to your extended family & it's important to share your journey here too. It's been almost six months since your accident and it breaks my heart to think of where you should be today and what you have been through. So instead we focus on where we are now and what we've got to do to get you back.

I love our early mornings together. Before the numerous doctors, nurses, aides, and therapists descend on you, we have our private time together. I like to be the one to wake you, to remind you where you are, how you got here. I reassure you every morning that you're in a safe place. While we stretch and move your arms and legs, we count our many blessings. First that you're alive, that you are young and strong and resilient. That we have such incredible support. That your brother, Austin, is your unwavering champion, your father, "Pops" your strongest advocate, your friends are true, that they are here for you. Our extended family, friends and community are all pulling and praying for you. We wash your face and brush your teeth. We practice swallowing. Then I get a picture off the wall, one your friend Georgia sent that captures your sparkle and charismatic smile. She wrote "Shine On" in bold letters across the top. I hold this picture in front of you along with a mirror. We look at the picture together and I describe your smile, your “sparkle” to you. I place my hand over your heart and assure you that your sparkle is still there. It's just trapped inside right now and we have to work to let it shine again. Smiling and talking are really quite complex. It takes lots of coordinated nerves and muscles, and sometimes a lot of effort. You know how to work hard, Forrest. You can do this. Find your voice, your sparkle, your crazy joyful sense of humor. It's all still there and we are all here to help you find yourself again.

I'm going to be away on business for a few days. It's hard to leave your side. But I know you are in the best of hands. Austin knows everything you need and is a master at bringing together the cadre of caregivers on your team. Your Pops has your back and will do whatever it takes to keep you safe. Aunt Lynn will help Austin & Pops, keep all the wheels turning & her positive energy will light up your room! Your friends will chip in, bringing their smiles and stories of home to encourage you. It's awesome to see them gathered around your bed, providing a much needed break from the endless hospital routine and quietly infusing your days with youthful optimism.

You have a lot of important work to do, Forrest. So while I'm away remember, hold your head up proudly. You are a fighter, a man of character and strength, a champion in my eyes.

With Love and Gratitude to Team Forrest,

Mum

Update: 12:20am on 7/6

We sure are missing Dad and Aunt Lobie! Mom and I have been holding down the homefront, and thankfully Aunt Lynn will be flying in Thursday to stay and help out for the third time! Mom has been doing the lion's share of time with Forrest. I'm amazed daily by her strength and perseverance. I do manage to get her to leave and go take a nap sometimes, but she's just as often there almost the entire day. It's incredible how she is always so upbeat with Forrest, has her eye on the target with whatever mission we're tackling that day (medication changes, therapy efforts, etc), and is nothing but polite and empathetic with the nurses and staff. She's an amazing Mom and an amazing role model, if I do say so myself.

We hope everyone had a great Fourth of July, Forrest was able to hear the roar of fireworks exploding all over the Capitol from his bed. Forrest has been working hard in therapy. We've been changing meds to address and try to alleviate his "posturing" and dystonia, so he's been a little calmer but consequently a bit less responsive the last few days. He is still able to dutifully offer his arms up for a hug when I ask him if he'd like a hug. I live for those moments. He understands a great amount at certain times and is tracking conversations and pictures we show him with his eyes, which are great signs.

He's been diagnosed with C. diff, again. So he's back on antibiotics and under isolation protocol. This doesn't exclude visitors, it just means the nurses have to take care to prevent it spreading to other patients. Hopefully with the antibiotics he'll be feeling better soon. We're looking forward to more productive therapy this week. Forrest is a champ and we're gonna help him keep pushing on.

All the best,

Austin and Team 44

Forrest working hard in Speech Therapy

Attention Visitors!

Maylin will be taking over coordinating visits, now that Nick Weeden and Gio DeSantis are both back at school. They graciously coordinated visits this summer and into this fall, and we couldn't have done it without them! But going forward, please text her at (803) 409-8743 or email her at mjcoggiano@gmail.com so she can find a time that works for you and works with Forrest's therapy schedule. Forrest and the rest of Team Forrest love the morale boost your visits give us. If you can't come, post a short video clip to the Friends of Forrest facebook page!

The address for the National Rehab Hospital is 102 Irving St NW, Washington, DC. It is located in the Washington Hospital Complex. Please park in the “Blue Parking Garage” next to the National Rehab Hospital. Please make sure you are healthy and aren't sick with a cold or anything else!

Your support is instrumental in Forrest’s recovery and it really means the world to Forrest to have upbeat, positive visits from his friends and supporters. While visits need to be “short and sweet” in order to not over-stimulate and tire him out, it’s important to stress that your visits are EXTREMELY important to him and to us, and we look forward to seeing you! YOU are Team 44!

Stay tuned for guidelines from his rehab team below:

Guidelines for Forrest’s Visitors

Because of his injury, Forrest is currently experiencing increased periods of distress and he may become overstimulated. Thus, we ask that all visitors respect the following guidelines both during the week and on weekends.

1) Keep the environment simple. People with TBI are easily overstimulated by their surroundings. Forrest may have difficulties with filtering out external stimuli that can lead to confusion and increase the chances of fatigue and frustration. Thus, it will be important to:

a) Keep him in a low stimulation environment as much as possible. This may include reducing the noise, the lights, or the activity level in the room.

b) Keep interruptions and distractions to a minimum.

c) Try to minimize the number of trips he takes off the unit, particularly to places that are busy and highly stimulating.

2) Interactions with visitors

a) Keep the number of visitors to a minimum. Try to have no more than two people visiting at any one time.

b) Keep visits short. In general, we ask visits be kept to 15 to 30 minutes of direct interaction, as Forrest will likely fatigue with longer interactions.

c) Give Forrest a break in between visitors to rest.

d) During interactions with Forrest, please stay on one topic at a time and avoid multiple conversations or jumping from topic to topic.

e) Treat Forrest in an age appropriate way and talk to him about things he is interested in. For example, show him pictures and talk about experiences you have shared with Forrest.

f) Re-assure Forrest that he will make a full recovery and that you will have many fun times with him in the future.

3) Orientation/Memory Problems: Due to his brain injury, Forrest may not recall all of the details regarding where he is and what happened to him. It may be helpful to tell him where he is and other basic orientation information (e.g., Today is Monday July 4^th 2011. You are in the hospital because you had an accident and you are safe. You are here to work on getting better. You are doing a great job and everyone is proud of you).

4) Sign Calendar: Please sign his calendar on the wall when you visit so we can talk to Forrest about his visitors and help him with his memory.

Thank you for being a crucial member of Team Forrest!