Monday, May 25, 2015

Memorial Day 2015

Forrest had an amazing weekend in Tom's hometown of Altoona, PA. On Saturday they played fair games, ate funnel cake, and even rode a carousel that Tom rode as kid! On Sunday we attended an amazing church service in Tom's old church, surrounded by so many wonderful people. Afterward, Tom and Forrest sang and shared Tom's journey and the impact of music therapy. It was incredibly powerful, inspiring, and humbling. It was so moving to hear stories of Tom's childhood and see the church and the people who helped make him into the indefatigable supporter of all people in this world, no matter what challenge they are facing.

We continue to struggle with "Hoover", the Wound Vac device.  Hoover is well worth the hassle, as it is helping the open cranial wound to heal. By reducing atmospheric pressure on Forrest's brain, it is allowing his brain to "blossom" and expand as he heals. Forrest also is still being administered really strong IV antibiotics around the clock through his Hickman central line.

However, he continues to march forward surrounded by an incredible community of friends. His days are filled with physical therapy, speech therapy, pilates, visits with friends, agility classes with Tollie, and the occasional over-indulgence of Coldstone ice cream. His unflagging spirit carries him on; yesterday he told the crowd "The secret is you have to remember to be happy!"

As we enjoy our families on Memorial Day, lets all give thanks to those who serve and have served our country.
-Austin and Team 44

Tom and Forrest singing The Impossible Dream


Several TBI survivors introduced themselves to Forrest after the performance, including a veteran who sustained a TBI in Vietnam

 Several teachers from a special needs school in Gujarat, India, were there. Tom, Kim, and Kyle from A Place to Be(APTB) traveled to India last December to conduct music therapy workshops and share their knowledge at their school. It's amazing to see APTB sharing the clinical power of music therapy across the globe

Setting our sights on the next goal!

Susan and Neil filmed in Altoona over the weekend for High Notes. Although he would have loved to tackle the highest roller coaster, he took joy in riding the carousel with Tom


Funnel cake with Kyle




Sunday, May 10, 2015

A Gloriously Blessed Day!


You Made It Champ! And it was a glorious day for the A Place To Be Spring Recital at Hickory Tree Farm.  So many talented courageous performers sang their hearts out for the audience! 

   Singing "Country Roads" with your friends from APTB Immersion Group!

Charlotte Davis joined you center stage to announce her family's amazing gift of $13,000 from Charlotte's Boston Marathon run in your honor.  This generous gift will be used to launch the Forrest Stone Allen music therapy scholarship fund! You have been so blessed to be a part of the APTB community.  And now through the Davis' gift and this scholarship fund, we can pay that blessing forward to others so that they might have the same opportunity. 

     Charlotte and Forrest announce the 
                 FSA Scholarship Fund! 

How perfect that you and Nathan sang This is the Moment!  No surprise that Your favorite line from the song is, "Damn all the odds!  This day or never I'll sit forever with the gods!"  My favorite line is, "This is the day- See it Sparkle and Shine!" After so many uncertain months in the dark, it was miraculous to stand in the shimmering light and watch you sparkle and shine! 
                 Sparkle and Shine!

The day was made even more amazing by Dr. Kumar and his wife's visit from Baltimore. He was clearly touched to see you "out of the hospital, in your element, embraced by this wonderful community, and living your life!"  
        Dr Kumar, Forrest, Tom & Toliver- 
             The unstoppable Team!

Dr. Kumar even performed his first house call, since visiting the Navy barracks years ago, to change your Wound Vac dressing at BrightWood Rehab. He is pleased to see that the wound is healing and gave "Herbert Hoover" passing marks. 

Dr Kumar checking your wound and giving Herbert his blessing!

You couldn't resist challenging Dr Kumar to be your partner in a rousing corn hole tournament at BrightWood. 
Austin, Bill, Dr K and Forrest.  It was a very close game! 

             Dr Kumar letting it fly!

Darlin' Forrest & Austin. You make my mother's heart sing.  I am truly blessed on this Mothers Day, and every day, to have such caring, courageous, and generous sons. You brighten my days and inspire me to be a better person. You make my life complete. 

Wishing all my Soul Sistors and Mama Bear Girlfriends a blessed Mother's Day.  

Mum

Thursday, May 7, 2015

Home Again!

Hi everyone, Forrest was discharged on Monday and made the trek home in the afternoon! He has a number of intense treatment regimens for the next six weeks, as Mom mentioned in Sunday's post, but he's in good spirits and working on regaining his strength. He's already back to his busy daily schedule.

Dad helped me move back from Durham yesterday, as my second year in the Masters program will be in Beaufort, NC on the coast at Duke's Marine Lab.


It's great to be back with Forrest, seeing him dancing and singing along to whichever tune is stuck in his head. His jovial nature shone brightly yesterday. When we stopped at a gas station, we gave him $5 to get a Mentos, and hung back toward the store entrance. True to form, he decided 3 packs of Mentos was the more appropriate number!

Yesterday we also attended an open house for the American Humane Association (AHA), which has been on the front lines of protecting animals and children since 1877. They work all over the globe, protecting pets, helping military service dogs get reunited with their handlers, educating children, certifying "no animals were harmed in this film" in Hollywood, and many other areas. At the event, there were a few amazing animal ambassadors from Seaworld, as seen in the below pictures.

Come see Forrest and other APTB kids sing this Saturday at Hickory Tree Farm (2pm), Middleburg VA. Dress for being outside.

-Austin and Team 44

Toliver making friends with a Bald Eagle that was rescued at 5-weeks old

 Toliver meeting a 2 year old sloth, that was rescued at 2-weeks old after rainforest destruction in Central America. Not sure who was more intrigued, Toliver or Melinda the sloth

Barbara Heffernan, longterm friend and colleague of Mom's, and family at AHA.

Forrest introducing Toliver to Dr. Robin Ganzert, President of AHA

Come to A Place To Be's art show and recital this Saturday!

Sunday, May 3, 2015

Weekend update from Johns Hopkins

Well Champ, it's been a rough couple of days but you have persevered with your characteristic determination and good humor. After multiple tries which involved ripping the glued-on dressing away from your scalp (OUCH!!!) your new "companion" The Wound VAC,  appears to have found it's equilibrium and is working smoothly now. Another challenge that had to be overcome was establishing a new central line to deliver multiple high-powered antibiotics intravenously for the next 6 weeks.   After careful deliberation, the PICC team here decided your peripheral veins are no longer suitable for long term catheters.  So yesterday afternoon you were taken to Interventional Radiology and a Hickman Catheter was surgically tunneled under your chest skin and into your central venous system which will deliver the antibiotics just above your heart.  The infectious disease doctors believe they have found two bacteria which could be the cause of your recurrent postoperative complications.  Hopefully this discovery and the aggressive plan to clear your body of this insidious infection will allow your Noggin to truly heal.  Already it seems your voice and energy are picking back up. More blood tests need to take place to determine the best antibiotic dosage which will wipe out the infection without damaging your kidneys.  Once the dosage is established and the Wound Vacc dressing has been changed one more time (Grrrrr), we will be headed home.  Hopefully Monday or Tuesday!

Forrest sporting his new Hickman catheter and getting acquainted with his Wound Vac device. Thankfully the home unit is reportedly much more portable! 

The long stretches of hospital time have been relieved by phone calls and Face Time visits from friends and therapists, walks around the unit, visits to the "Teen Room" and Toliver snuggles.  

Virtual speech therapy with Laurie had them both in "stitches"!

Forrest and Toliver delivering cookies to the nurses station. 

Toliver Snuggles...The best part of the day! 

The nurses and doctors all know you are planning to sing "This is the Moment" at the APTB Spring Recital on May 9 and they are collectively determined to get you there!!!  We are all looking forward to seeing lots of your friends at the Recital!!

Please come celebrate Spring next Saturday with Forrest and A Place To Be!

With gratitude for the wonderful Johns Hopkins doctors and nurses,

Mum

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

Post-op

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