Monday, February 27, 2012

Update: Wednesday 2/29/12

Hey Forrest, as I write this, you, Maylin, Nurse Z and I are watching a DVD of you playing the part of Jem in the Creative Youth Theatre production of "To Kill a Mockingbird". The rain is pouring down outside and the fire is crackling warmth in your Man Cave. We are all transfixed, watching you so young and talented, hearing your youthful voice. I ache to hear your voice again, Forrest. We know you understand language and we hope and pray that you will find your own voice again soon. You have so much to tell us.

While we wait for your surgery date, still planned for March 23rd, we focus on those things that we can impact. Each day we recite the many blessings we are grateful for. We are blessed with your indomitable spirit, a loving family, an incredible team of caregivers, extraordinary friends, our Spring like weather that has allowed you to spend so much time healing out of doors, and our caring supportive community. With Tom and Melissa's determination we link arms and battle with you to find your voice. With Del and Valerie's guidance we concentrate on keeping your muscles and joints limber. Austin and Maylin create endless reasons for you to smile and laugh. We take you outside every chance we can, We feed you wholesome organic smoothies. We are by your side night and day to protect your airway and together we celebrate every victory.

Each day you face your demons head on with strength and grace as you fight to regain your life. Recently, after months of coaching and encouragement and with huge effort, you finally found your own hands and when the dystonia allows, you open those hands to the world around you. You and your brother are my inspiration, my heroes, the light of my life. You will succeed.

Forrest and his Team are really excited that Spring is just around the corner and are hoping Spring Break will allow Forrest's faithful friends time to stop by and catch up. His whole being brightens when his friends are around! And they reinvigorate Team 44 and infuse the Man Cave with youthful energy and enthusiasm!

We really appreciate your Blog Comments and your patience when it takes us a while to update it. Below are some highlights since our last posting:

With love from BrightWood,

While Forrest spends time on the tilt table, Panda Coach Austin helps Forrest regain control of his hands using the familiar feel of his LAX stick.

Spending time outside with a great friends like Matt is the best therapy ever!

Valerie will go to any height to help keep full range of motion in your shoulders.

You made Maylin's day when you were able to hold a marker in your hand and with her help make your mark on the whiteboard!

Monday, February 20, 2012

Update: Monday, 2/24/12

UPDATE: The surgery has been moved again. It will now be in late March, roughly a month. We are very disappointed in the situation. Forrest, like the champ he is, has been fighting every day and is showing small, intermittent signs of progress, delivered each day through struggle, hard work, and his fierce determination. But he cannot make the real progress until after the prosthetic is on and his cranial environment and pressures are closer to "normal." While we are frustrated with the delay, our medical team and doctors have and continue to be terrific, and this is by no means a reflection on them. This is just a very complicated reconstructive surgery and scheduling the various parts of it has proved challenging. We will keep doing what we always do, as one of our loyal blog followers wrote, "change course and look for the open trail." We will keep helping Forrest get stronger and back to his life, one day at a time. We see Forrest's same humor in there every day, that unconquerable love for life that always drew us to him and made him the amazing friend, son, and brother he is.

All the best,
Austin & Team 44

The surgery being postponed a week has given us one more week for Forrest to keep getting stronger. The weekend brought some highlights, with Forrest trying to move his hands a couple times each day. When we did our daily brother not-so-secret secret handshake on Sunday, he was able to open his hand and slowly close it in the fistbump motion. That's a great improvement over our last couple months of handshakes!

Forrest also had some great visits from Friends, shown in the pictures below. One of the great moments from the visits was when his friend Peter told him about a Thanksgiving party Forrest threw in the basement a few years ago. Without any prompting, Forrest got this huge lopsided grin on his face. He has a long way to go, but he's trying every day and that gives us all strength. Seeing the smiles on his face when his friends talked to him shows how much time with his friends restores his morale. We hope to see some friends over spring break! We may still be at the hospital or we may be home.

The current plan is to transport to the hospital on Thursday, and put the lid back on Friday morning. We will update you all after the surgery. Thanks for all the prayers and warm thoughts.

Austin and Team 44

Montana visits and spends some "horse therapy" time with Forrest

Peter and Forrest catching up on some guy time

Forrest listens intently as Corina describes fun memories

Forrest and Super Mom breathing in fresh air by the fire pit

Tuesday, February 14, 2012

Update: Tuesday 2/14/12

UPDATE: The surgery has been rescheduled for next Friday, Feb 24, because the prosthesis has to be re-engineered to better fit Forrest. We're grateful that we found this out before arriving at the hospital. It also gives him another week to keep getting stronger! Thanks for the warm wishes and prayers.

Oh Forrest, its your Mum. We've been home almost eight weeks and we've all been re-energized by the sights, sounds, and smells of home. Friends, neighbors and colleagues have rallied around you and our family, lifting us up with their faith and love. So many people have made this precious time possible. Your friends were by your side constantly while they were home from school. Austin, Maylin, Tom, Melissa, Del and Valerie made sure that you didn't loose any ground in speech and physical therapy while you've been home. The Medical Team has provided you with a top notch team of nurses to help us care for you around the clock. Drs. Falkenstein and Lee have made sure you remained medically stable. Dr. Tim Weed has helped you relax and recharge your positive energy flow. The OCH Ladies delivered nurturing meals on wheels. Jimmy Emmett and Kent Deeben created a healing outdoor space and a safe access for Forrest's van to the Man Cave. Your Pops and Big Brother, Austin, have linked arms with you day and night as your steadfast companions and defenders, protecting you against all potential dangers.

And you Forrest, have made it all worthwhile. Deep in the core of
your being, you are healing, gaining strength from your surroundings and those who love you. Each day you struggle to find a way to reach out to us. Occasionally now we see your eyes fill with tears as you become more self aware, as you grieve for all that you have lost. Sometimes you try so hard to communicate with us that your whole body begins to tremble with the effort. But you never give up. Your courage and faith sustain you, as you battle to regain control of your thoughts, to find your voice, to become master once again of your hands and long long legs. Just yesterday, with a herculean effort you were able to lift your right hand and although you couldn't quite straighten your fingers, the "high five" you gave to me was a brilliant sign of your spirit and determination. We see many more expressions play across your face now; humor for sure, often kindness, also we see frustration, fear, pain, sadness, and sometimes despair. But never have we seen anger there. Your core personality, what makes you uniquely Forrest remains intact. I pray that you can hold on to that core through this next chapter of your recovery. I won't lie to you, Forrest. It will be tough. But you are young and strong and resilient. Like your brother, you are a warrior, a champion. You will persevere. You will succeed and we will be by your side, holding your hands, cheering you on for as long as it takes.

With the help and encouragement of our community, we have accomplished what we set out to do. After almost a year in six different hospitals, we brought you home for
the holidays. Here you have gained eight pounds. Your blood parameters have all improved. You are stronger now and, once we help you get up on your feet, you can support your own weight standing up to 14 minutes. Your smile comes more easily and the color has returned to your face. You are ready now for the next huge hurdle. This Thursday we will return to Washington Hospital Center and Friday will be your third cranioplasty.. This time the skull prosthetic is made of titanium. We have begun already to prepare for surgery with twice daily surgical scrubs of your scalp. Hopefully the more inert composition of this "lid", your improved health and condition, and our aggressive skin preparation will prevent the devastating infection you developed last October. We can't know now how long we will be in the hospital this time. We may be home as soon as two - three weeks or we could be gone again for two- three months. Our first priority is to get you safely through surgery, then we will transfer back to National Rehabilitation Hospital until you are medically stable and strong enough to return home to BrightWood.

Our family is eternally grateful for our amazing community. The outpouring of love, prayers, cards, visits, and words of encouragement have made the journey possible. This has been a devastating injury for Forrest and an unimaginable heartbreak for his family and friends. But together, we have all learned the true value of family, friendship, the power of a kind word, a generous deed, the meaning of faith. We have never felt alone. And together we will conquer the next hurdle and whatever comes after. Together we will bring Forrest home again to soak in the healing power of Spring in our beloved Virginia countryside.

There is a possibility the surgery date will change, so we will update the blog if anything does or post-surgery on Friday.

With love and gratitude from BrightWood,


Below are some of the treasured memories gathered during our time at home:

Forrest soaking in the winter sunshine at home.

The Medical Team visits on Valentine's Day.

Forrest offers Mum his first high-five since October on her birthday!

Acupuncture with Dr. Tim Weed helps Forrest relax and regain his positive energy flow.

Forrest is able to open his hand in order to reconnect with Snickers.

Maylin reads to Forrest outside by the fire-pit.

Monday, February 6, 2012

Update: Monday, 2/6/12

Forrest has had a great week and weekend. He's been standing tall for a few minutes every day, as well as spending a few hours total on the tilt table and his chair each day. His endurance is building up and he's even gained a few pounds since coming home! We're getting him ready for a possible surgery date next week, another cranioplasty to put the "lid" back on. It will hopefully be his last and final surgery. Then we expect to keep making progress at "Brightwood Rehab" here at home.

One of the best moments of the week was last Friday. Mom came home from a business trip and walked down to the basement to say hi to Forrest. His eyes locked on to hers as she approached the bed. Standing by his bed, she asked for a hug. With much effort, and with her and I frozen in amazement, he slowly lifted up both arms for a hug. To top it off, I came around the other side to give Forrest a group hug with Mom. Mom was so excited she was kissing us both on the forehead, going back and forth, and Forrest grinned from ear to ear with that
characteristic, "Mom, come on, stop it" smile. It was a beautiful smile.

He's still in there and fighting every day. He's still laughing at youtube "fail" clips and "Anchorman" and the like. He's been getting stronger the month and half he's been home. There are many things we have, and Forrest has, to be thankful for. It was great seeing many of his friends over winter break, and I know it meant the world to him. You all should feel free to skype him when you have free time, it really cheers him up. It won't always work out schedule wise, but if you let us know the day before or even the day of, we will try to make it work. And if it doesn't line up one day, we'll try again the next day! Feel free to text me to find a break in his schedule.

Thanks for your belief in him. He's not giving up so neither will we.

Tom, Music Therapist, and Melissa, Speech Therapist, work together with Forrest to help him find his voice.

Jason Price helps Forrest make music with an app
that creates Forrest's favorite music, "Dubstep"

Forrest stands tall.