Wednesday, April 29, 2015

Day After Surgery

Forrest has had a great day today.  He was able to walk a few laps of the unit and enjoyed a visit from his friend Christina.  He's been talkative, happy and has had minimal pain.  Dr. Kumar checked in earlier and is pleased with how Forrest's noggin' is looking.

Thanks all of your faithful support.
- Team 44 

Taking a lap around the unit with Toliver, Tami and night helper Bridget
Forrest and Christina enjoyed a raucous game of cards and many laughs!  Thanks Christina!

Tuesday, April 28, 2015

Post Surgery Evening Update

While a few lingering protesters ignore the emergency curfew on the streets here in Baltimore, Forrest and Team are safely settled in for the night.  Forrest is in the 10 N unit of the children's building at Johns Hopkins, where we have been for our last few trips here.  Many of his previous nurses have stopped in to say hello and wish him a speedy recovery and we were excited to see that his awesome nurse for tonight is one he has had before and is familiar with Forrest's care.

Forrest recovered from the anesthesia well today and sat up in bed this evening to eat a bowl of hearty chicken noodle soup and down a large glass of juice and another of tea!  He enjoyed a FaceTime with Austin and laughed through reruns of "Full House" on Nickelodeon.  

I am keeping watch tonight as we monitor closely for any issues or changes related to the new Wound Vacc dressing and shunt adjustment.  Thank you all for the messages of love and support today and for the continued prayers!  We will update tomorrow.

- Tami (and Team 44)

FaceTime with Austin


Forrest made it through a night of protests and vandalism that rocked Baltimore last night and then sailed through surgery this morning at Johns Hopkins. 

Dr Kumar is pleased with the outcome. He was able to debride and flush the wound in Forrest's beloved Noggin.  He then applied the Vacc Wound dressing that will continuously apply -75 mm of negative pressure to the wound.  This will hopefully obliterate any space between the skin and underlying muscle flap.  Simultaneously the neurologists adjusted Forrests shunt to allow the Cerebrospinal Fluid (CSF) to gradually expand his ventricles. The hope is that between these two procedures, Forrest's brain will establish a new healthy equilibrium in which to thrive.    

Because there are a lot of "moving parts" Dr Kumar wants to keep Forrest here at Hopkins at least for the next week. Once the CSF and wound have both stabilized we will be BrightWood bound!  Forrest is still planning on singing with his pals on May 9th at APTB Spring Recital! 

Thumb is already up in Post-Op! 

With love and gratitude for the many prayers messages and all the positive energy flowing Forrest's way.  

God Bless,
Team 44

Sunday, April 26, 2015

Dreams Really Do Come True

.....With persistence,  hard work, the support of many, and prayer, gigantic dreams came true this week. 

Your amazing friend Charlotte Davis dreamed of completing the Boston Marathon in your honor, Forrest. She trained through freezing rain and monstrous Boston snowstorms.  On race day she ran through the pain of a torn hamstring. She could not be stopped!!! And when she crossed  the finish line, Charlotte lifted her arm to the heavens and shouted, "This is for you, Forrest!" Her determination and Herculean effort's raised over $12,000 for the Boston Medical Center.  And through the generosity of her family, this amount will be matched in your honor for A Place To Be!!!! Incredible!!!

            "This is for you, Forrest!"

When I first dreamed of a CCI companion dog for you Forrest, you could barely speak or walk on your own.  In my mother's heart I envisioned you strong and healthy, with this steadfast dog at your side, reclaiming your Independence and attending college. Last Fall with Tami's help you enrolled in a NOVA online American history class.  In spite of three hospitalizations, major surgeries, and heartbreaking setbacks you would not withdraw. With Tami's devoted tutoring and your sheer determination you overcame every obstacle and completed this course. On Friday you passed your final exam and got a B in your first college course! 

 Forrest and Toliver on campus for their American history final exam!

These amazing accomplishments can only happen with the support and faith of friends and family. Our extended family has generously come to our aid     countless times over the last four years.  This week with Pops working in Kentucky at Rolex and me a contagious mess of virus and coughing fits, it was clear we needed back up. Your Aunt Tricia dropped everything and raced to Brightwood. Her enthusiastic support allowed Tami to focus on helping you prepare for your final and allowed me to stay a safe distance away from you! 

Forrest, Tricia and Toliver taking a break at Panera! Toliver is doing his invisible service dog thing, with just his nose appearing by the table... 

These amazing milestones, Charlotte's  Boston Marathon and your American History Marathon, have bouyied your spirits and steeled our resolve.  Anything Really IS Possible! And so tomorrow we depart again for Johns Hopkins Hospital where on Tuesday Dr. Kumar and his team will surgically repair the growing wound on your precious Noggin.  The plan has been to treat the wound at home with antibiotics and twice-daily cleaning and bandage changes, giving time for the drainage to subside before surgically repairing it.  Unfortunately, the open wound has allowed atmospheric pressure to exert its deleterious effects on your brain again. These effects have been painful to watch. Some of the Miraculous gains in your speech,  processing speed, and memory, since the surgical reconstruction in March, have slipped from your grasp.  But still you press on with good humor and heroic effort.   You encourage and inspire us every day to "Never give up!  Never surrender!"  You have come so far and accomplished such incredible feats.  We are confident that this next surgical repair will allow you to reclaim your amazing trajectory. You can do this Champ! And we will be by your side every step of the way!

With Love, Faith and Gratitude,
Mum & Team 44

Monday, April 20, 2015

Boston Marathon today! Go Charlotte!

Earlier on the blog we told you about Forrest's friend Charlotte, who decided to run the Boston Marathon in Forrest's name, with a portion of the proceeds going to A Place to Be.  Well, today is the big day!  Charlotte is over halfway through the race, but it isn't too late to donate!  It is an extra special matching Monday, so all donations made today will be matched TWICE!  Here is the link to her page:

Team 44 rocking our Marathon gear!
Charlotte and "Forrest" checking out the finish line earlier

Thursday, April 16, 2015

A Little Scare and Trip to the ER

Earlier this week, Forrest made an unexpected trip to the Johns Hopkins Emergency Room.  He had been experiencing drainage from an area on his incision for a few days and after consulting with his doctors, it was decided that a CT and visit with Dr. Kumar was necessary.  The result was unfortunately what we had expected – the incision on the narrowest area of his graft is breaking down.  Forrest is on antibiotics and is back to having his head bandaged but we are thankfully able to treat and monitor the area from home - no hospital stay needed at this point!  We plan to meet with Dr. Kumar in a couple of weeks to reassess. 

Despite this little bump in the road, Forrest’s spirits remain high and his smile and charm are quick to appear.  He is continuing with his full schedule of pilates, PT, music therapy, immersion group at APTB, speech/cognitive therapy, studying for his US History final, agility training with Toliver, as well as going to movies, enjoying calls and FaceTime with friends, lunch outings, helping with errands and playing corn hole and many games of pool.

Thank you for all the continued support!
- Team 44

"Hulking" out with Mum's business partner, Jay 
Corn Hole with D-Rock

Monday, April 6, 2015

Embracing This Moment

     After so many highs and lows throughout this journey, it is thrilling to see you doing so incredibly well.  You are stronger, quicker, and your ability to really communicate your thoughts and feelings is growing almost daily. 
    Your friends, therapists and doctors instantly see and feel the difference and are astounded. You are whole. Your voice resonates with confidence. Your humor is sharp and insightful.  While you still move with a limp, there's a healthy bit of the old Forrest swagger in your walk. And though there are still gaps, your memory is improving also. 
    On Friday, Dr. Kumar grasped the difference immediately and we both felt you were ready to see the before and after 3-D CT scans of your skull.  When you see the images for the first time, the gaping deficit of the before image is in stark contrast to the symmetry and wholeness of your reconstructed skull.  
"I had no idea," you whisper.
The before and after CT Scans of Forrest's head is a stunning reminder of the challenges he has faced.

    With your heightened sense of self awareness and growing communication skills, you were able to really talk with Dr. Kumar about parts of your journey. You told him you remembered that some of the doctors who saw you didn't think you were going to make it or didn't think you would be able to have a full recovery. Dr. Kumar replied that the doctors have probably never seen the outcome of this particular series of surgeries before.   He explained to us that when he developed these procedures as a Navy surgeon for patients in uniform he didn't know if or when they would be able to help civilians.  You are the first civilian patient to undergo this series of reconstructive surgeries for a catastrophic cranial injury.
He said now you can show other doctors what's possible and create hope and new opportunities for TBI patients who have not responded to conventional treatments.
    Dr. Kumar told us he is thrilled with your progress and the potential for your future. You offered your hand to Dr. Kumar and told him gravely, "Thank you Sir for your good work".  Smiling, Dr Kumar replied,  "I couldn't have done it alone. You're a fighter, Forrest. We did this together".
    Although your father and I have studied all of your CT scans, we have never been blessed with this vantage point.  When I look carefully at the before and after images of your skull now, and looking back remember all of the setbacks and complications, I don't know how it is possible that you not only survived, but accomplished all that you have.  Without the love, prayers and faith of friends and family, without the hope and joy that Tom and music therapy brought us, I don't believe we would have made it to see this miracle reconstructive surgery succeed.
    There will be more tests, CT scans, MRIs and 6 to 9 months before we will know if all of the bone grafts will take and heal. There will likely be more challenges and surgeries in your future.  But hopefully we have seen the last of the heart wrenching setbacks and the major life threatening operations are behind you.  Now we can focus our energy on rebuilding your life. And by living a life full of joy, passion and purpose you will surely help others find their own path, their Place To Be in this world.    
There were so many joyous moments this week, moments shared with friends and believers who make your journey, this life, one overflowing with love, laughter, and joy.

Here are a few of the highlights:
Shannon Davis and her beautiful daughters visit
Forrest asks Charlotte to wear his lucky APTB bracelet while she runs the Boston Marathon!!! Her family is matching the donations she raises for the Boston Medical Center as a gift to A Place to Be in Forrest's honor! Isn't that amazing?!? Please check out her page and help make this a really big check!!

Here's a video of Charlotte and Forrest making their deal!

Tori, Forrest's great pal since kindergarten, reminisced about the good ol' days and had a rousing game of pool!
We celebrated Easter Sunday with Del & Mary at Cornerstone Chapel followed by Brunch!
Life long pal, Madison, and Forrest share a laugh and practice their dance moves.

With a heart overflowing with gratitude for this new blessed opportunity you have been given.