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