Wednesday, March 28, 2012

Update: Wednesday 3/28

The past couple days have flown by! Forrest is already hard at work. Yesterday was a true testament to his pure determination and unconquerable strength. In the morning, Forrest opened his mouth while brushing his teeth without any assistance (which is HUGE!)! Some mornings his mouth is closed tightly and requires assistance opening. Getting all his muscles to cooperate and follow his brain's commands has been months in the making, but yesterday he was successful! As if this huge accomplishment wasn't enough for one day, Forrest reminded everyone he was the ultimate champion by successfully sitting up for 20 minutes with the help of his Occupational Therapist and his Physical Therapist. Not to do anything halfway, twice Forrest triumphantly lifted his head! With every one's cheers filling our tiny room, Forrest sat tall, proud, and determined, just five days post-surgery.

This week Forrest and Team 44 have been reminded of the sheer power of friendship. The touching messages, supportive comments, and fun visits we've received in the past week have given us all the strength we needed to keep going. Forrest's spirits were lifted this week by visits from his friend Keith and his mother. You could see how engaged and present Forrest was while Keith told stories of driving 4-wheelers and showed pictures of them in the eight grade.

Forrest is fighting on. He is gaining more control of his hands. Several times this week, Forrest overcame the round the clock tone he fights and held his iPad to look at pictures, watch video clips, and listen to music. He especially enjoyed watching all the video messages on his group Facebook! Every day we work on strengthening Forrest's fine and gross motor skills in fun and exciting ways. While trying to play tic-tac-toe yesterday, Forrest had an incredible moment. He got this look of fierce determination in his eyes and began plotting his first move. As Forrest began to move his pen to the board, he did something amazing. He overcame his contracted muscles and moved his entire arm to position the pen to make his mark in the lower left square! Working with Forrest and watching him constantly fight against his tight muscles is more than inspirational. As difficult as it is to watch him struggle, it's so fun to have a student like Forrest who never gives up and is always willing to try. It's this amazing courage and persistence that I know Forrest will bring to his rehabilitation at NRH.

We are hoping to transfer back to NRH sometime tomorrow. Rae has been in constant communication with both institutions, and is waiting for the official green light. We will update with any new information we receive.

With appreciation and admiration for all who help Team 44,

Forrest sitting up for the first time since surgery.

Forrest making his mark while playing tic-tac-toe.

Forrest and Keith share a laugh while watching funny videos.

Judy and Pat from the Medical Team stop by to check in on Forrest.

Sunday, March 25, 2012

Update: Sunday, 3/25/12

Forrest is being the champ he is. He's continuing to recover well since the major surgery last Thursday. We stepped down today from the ICU to the intermediate ICU, and hope to transfer to National Rehab Hospital (NRH) within a week or two, as soon as he is medically stable and able to participate in 3 hrs of therapy a day. Today Dr. Armonda, his neurosurgeon, removed the bandage, inspected the incision site, and applied a fresh bandage. The incision is looking good. The last one of the surgical drains was removed from his head today, which is a great milestone. He's looking a ton better than yesterday, he's tracking with his eyes and following people and conversations. We show him videos and pictures of his friends and he's very attentive. He's smiling at jokes and movies, which brings us even more joy than it does to him!! The Medical Team nurses that have been taking care of him the last 3 months at home are sitting with him at night in the hospital, both to help keep his airway clear in the event of emesis, and just as importantly, to provide a familiar face for him and boost his morale. It's great to provide a continuity of care, Forrest has a great relationship with the wonderful Medical Team nurses. The Washington Hospital nursing staff, doctors, physicians assistants, techs, and everyone involved have been amazing and we are grateful for them working so closely with us on Forrest's behalf and being flexible with Team Forrest's high level of involvement in the direction of his care. Brief visits would be great at this point, please contact Maylin (803-409-8743) Mon-Thurs and me (Austin 540-729-2620) Fri-Sun to figure out a time that will work. Thanks so much for the comments, we read them everyday and they help keep us going! :)

All the best from Team Forrest,

Forrest smiling at a joke in "Wedding Crashers"

Friday, March 23, 2012

Update: Friday, 3/23/12

Kent, Austin and I are taking shifts bedside with Forrest in ICU now. He is sleeping peacefully listening to Coldplay. Hopefully, the music mutes the constant beeping of monitors and the bustle of a busy ICU. He struggled most of yesterday with a slow recovery from anesthesia but the doctors were able to wean him off of the ventilator late last night. Nausea has made it hard for him to keep his medicine down most of today. His stomach seems to be settling now and we have started him on diluted juice and water through his feeding tube. If he keeps that down, we will begin his organic homemade "smoothies" again tonight. Thankfully, some of the awesome nurses that cared for Forrest last summer came to see him when he arrived in ICU and graciously vouched for his Team 44 Entourage. Leaving Forrest alone is simply not an option. Our 24 hour vigilance has been cleared by the hospital powers that be, and the nurses in recovery and ICU have been wonderful. His therapists from his previous hospital stays at WHC came by today and marvelled at his improved weight and condition since he's been home!

Austin accompanied Forrest to his first post-op Cat Scan at 5:00 AM this morning. The images are encouraging and the drainage is slowing down. This afternoon, Forrest was able to struggle up from the post surgical fog, and wiggle his toes when asked if he was in pain. His reward was a speedy dose of pain medicine and a chance to go back to sleep. His amazing brother and champion, Austin will keep vigil bedside again all night. Tomorrow the surgeon will change the compression bandages on Forrest's head and we'll have a first peek at his new profile. Tonight Forrest is resting, gathering his strength for the next chapter in his journey. Our family was blessed to have had such a wonderful reprieve at home. We are grateful that Forrest has made it safely through this difficult surgery and appreciate your continued support and belief in Forrest, more than you can possibly imagine. Your prayers and words of encouragement sustain us. We take turns reading your messages and visions of Forrest healed to him so that he knows he is not forgotten, that he is loved and cared for by so many faithful friends and followers.

With love and gratitude,

Mum & Team Forrest

Doing our nightly respiratory therapy

Mom reading wonderful blog comments to Forrest

Thursday, March 22, 2012

Update: Post-Surgery 3/22/12

Forest had a successful surgery this morning. He is still in recovery and is slowly waking up (as has sometimes happened to him previously). The surgeon seemed very pleased with the prosthetic application and his general condition. The prosthetic replacing the front part of the skull this time is made of titanium which is a nonferrous or non-iron containing metal. It is extremely hard and should be very resistant to infection. Because it is nonferrous it should not interfere with x-rays, CTs, or MRIs. Next, after his drainage tubes in the skin area have been removed, he will go to ICU and likely stay there on IVs and antibiotics until he is transferred to the step down unit. After he is stable at the step down unit he will hopefully go to NRH to reenter therapy for a period of time. After that, back to his Brightwood rehab room and the farm.
Team 44 is watching him closely for any of the complications that can be associated with this major surgery. We thank everyone who helped us and worked so hard to get him in great shape for this surgical procedure. We are hopeful this will make a major change in his ability to get back to successful physical therapy and start making strides to move forward. Thanks again for everyone who helped him, prayed for him, and thought positive Team 44 thoughts. We will try to update the blog every other day and keep everyone posted as to what is going on.

Thanks again,
Team 44

Tuesday, March 20, 2012

Update: Tuesday 3/30/12

It's been great to have this hiatus at home, but it is finally time to get this last surgery over with. The surgery schedule and the titanium prosthesis have coincided this time to make a surgery date happen. Everything is a go. We will be transporting back to Washington Hospital Center tomorrow with Forrest's well oiled team. Thursday morning Forrest's same Neurosurgeon will perform Forrest's 3rd cranioplasty. We've tried to do everything to stack the deck in our favor, and barring infection and complications, this should be Forrest's last surgery. The combination of the shunt and the "lid" will hopefully allow for more normal pressures, allowing Forrest to get back on his road to recovery and his life.

Thank you for being by his side, both in thought and prayer. Continue to post videos to his facebook page, we show them to him almost daily now and he laughs and grins and "escapes" for a moment. When Matt and Mike visited Friday, it made me so happy to see him light up and grin when they just mentioned playing "Halo" with him and how he used to beat their butts every time even if they were on a team against him. Every day he lets us know he is "there" inside. As we all know, Forrest is a fighter and a champion, and he has loyal friends and amazing community support. He will get through this, he still has youthful strength and most importantly, his humor. Thank you for supporting us as well as him.

Go Team Forrest!

Forrest listening to fun times

Sundance and Forrest's cheesy smile

Monday, March 5, 2012

Update: Wednesday 3/7/12 by Tom Sweitzer

During the last month our Music therapy sessions with Forrest have turned to supplying JOY. Part of what we do as Music Therapists is musically disguise activities that a client might be weary or resistant of doing, such as physical movement, trained breathing, eye gaze exercises.

Forrest loves to start our session with a disco version of Zipeedeedodah and then watch everyone in the room wear crazy hats and dance around his chair. Music has brought Forrest a smile. THAT IS EXERCISE FOR THE FACE! Many people need to work those smile muscles more often. We have also found that distorted voices make Forrest happy as well. Not to mention when you wear a Panda Bear hat and talk in a “Cartoon” voice. Somehow, humor enters into Forrest’s being and out comes this SMILE!

During our breathing exercises, just yesterday Forrest responded by imitating my vocal sound. I noted that when he prepares to make a vocalization he takes a tremendous breath and his entire body becomes involved, obviously to perform this task is a great physical challenge. But, even though it must feel like pushing a 2 ton elephant up a hill – AHHHHHH – Sound. Quiet, soft, but it is there. There is a voice in there!

Forrest loves company and his daily routine is transformed completely when someone will come by and laugh with him or just wear a funny hat, or draws a sword and sword fights with him. We ask that any friends that are home for Spring Break please come by and just hang out. The feeling you will get after your visit is one you can take with you for the rest of your day, your life. Please contact me if you would like to join in our Music Therapy sessions while you are home from college. You can be a pirate, disco dancer or just come by and talk to your friend. Together, we will help Forrest find his voice again.
With the generous support of Forrest's friends and family, we have already raised over $6,400 for the Forrest Stone Allen Music Therapy Scholarship Fund. So far four children, who wouldn't otherwise be able to participate in Music Therapy, are receiving the joy and empowerment it can bring to their lives. To learn more about Forrest's Fund and the lives he has touched, see More details will be included in our upcoming newsletter.
On another "note", Robin Cavanagh of Duchessa of Middleburg invites you to become their friend on facebook (Click here). With each new friend Duchessa of Middleburg makes during March 2012, Duchessa will donate 1$ to The Washington DC National Rehabilitation Hospital’s Therapeutic Garden and 1$ to The Forrest Stone Allen Music Therapy Scholarship Fund ( A Place to Be, Middleburg Virginia). This generous offer from Robin will help us reach out and touch more lives in Forrest's honor.

Love you Forrest,
Tom Sweitzer

Music Therapy lessens the tedium of strength and flexibility work.

Music and Humor are powerful tools in Forrest's recovery!

Forrest relives The Hill School 8th Grade musical, "Guys and Dolls".