Weekend in Photos

 Life can be hard without music or friends!

Luckily...a weekend full of "Stink" shows and time with friends brightened all of our lives!

Dragonfly Bartender Forrest with Butterfly Liz, Ladybug "Dot" Megan, and Fly-Girl Abby

APTB camp was at The Hill School, which Forrest says is like "a second home"
for himself and other Hill School alumni
(44, Russell, Matt, Remy, Derek, Boo, Syd, Lilly and Kyle)

"Stink" Cast

Pool party with former nanny Mita and her family

Fun times even out of the pool!  PEACE!

Thanks to all that came out to see "Stink" and to those who put in countless hours to make the camp a great experience for all!  

Forrest says: "A Place to Be camp helped me get through some rough days.  It kept me going even when my body didn't want to cooperate.  I am thankful for a 'STINKY' experience!"

During camp, Forrest was given an opportunity to share a motivating quote with his peers.  Here is what he shared:  "Life can be pretty weird and bumpy, but you can make it through!"

Highs and Lows

Of all the wide range of emotions this journey has revealed to us, defeat has never even been considered.  But this week I feared I saw it for the first time on your face. Utter defeat is void of hope, It is paralyzing. It sucks the life force out of the room leaving only a shadow behind. Defeat is more terrifying than anger or rage, but we saw those as well this week as you battle to reassert yourself.

We cried, or rather I cried, then we scraped our game faces off the floor, linked arms, gathered strength from family and friends and went after the demon. We refuse to believe that the Come Back Kid would give up. It has to be side effects of the medication making you so depressed and frequently either non-responsive or angry. It's just not YOU.   We cannot let the medicine that is supposed to protect you, instead rob you of your personality, your humor, your optimism. After multiple consultations the doctors have agreed to begin lowering your first seizure medication sooner than planned. There are no guarantees, only calculated risks. We hope and pray this is the right decision, that you won't have another seizure, your sparkle and shine will burst through the fog and your humor will re-energize Team Forrest. 

We are grateful beyond belief for the many messages of encouragement, faith, and support and the visits of your friends this week; Gio, Shayna, Tori, Nick and Derek. They bring the most wonderful energy and light into our lives! The incredible cast and crew of APTB Summer camp have been patient and supportive, while they challenge you to keep moving forward.  Austin and Tami create humor and patience where it doesn't exist, just when we need it most. 

So tomorrow morning we begin decreasing the suspect medication and are hoping that within the following 48 to 72 hours we will begin seeing more and more of the Forrest we adore. 

There is a show to put on this week end at the culmination of A Place To Be summer camp. And the musical "Stink" needs its dragonfly bartender, Forrest, to be in fine form!

Please come cheer for Forrest and the amazing cast & crew! It promises to be a most creative and humorous look at a Stink Bug named Stanley and his dreams!  

Paying it Forward: Austin's CCI puppy Martin will hopefully change someone's life like Toliver has Forrest's. (photo by Sharon Hallman) Check out Sharon's other Martin photos and follow Martin's journey at https://www.facebook.com/martincci

Celebrating the most wonderful Pops on Fathers Day with your first venture into the pool 

Megan, Forrest and Nathan.  Awesome cast and Crew members of Stink!

The amazing inspiring and talented "Stinky" Cast and Crew !

PLEASE come.  Bring your family and friends. You will be glad you did! 

With Faith Love and Renewed Optimism,

Mum

Day By Day

Sometimes the uncertainty can be the hardest part.  Your specialist can't tease apart all the different factors that could be affecting you right now. Are we seeing lingering effects of the seizure on June 2 or are the higher medications you are on now to prevent further seizures weighing you down?  Is the anemia from your chronic wound sapping your energy or is it the antibiotics? We know you are still battling the atmospheric pressure from the open wound on your scalp but it's too dangerous right now to try to surgically close it.  So for now we have to stay the course. The good news is we are done with Hoover the wound vac and your Hickman central IV lines came out yesterday!  While we're concerned about the possibility of another seizure and are taking extra precautions, living your life ....out loud with your crooked smile brightening the day...is still the best plan! 

As you explained to a journalist some months ago "There are lots of way highs and some real lows in life.  Sometimes you just have to wait out the lows to get to the next high".  Well we've been in much lower places during this journey, and we know there are more great times ahead.  So we will do our best to keep you safe,  give you time to heal, enjoy each day we are blessed with, and keep working to get back on top! 

With love and faith, 

Mum

Singing Lean on Me with your friends from A Place to Be at a fundraiser for Sprout therapeutic riding center

"There's something about the outside of a horse that is good for the inside of a man". Winston Churchill

Chess PT with Gio

Dr. Kumar says that we will get through this and great news: If we're careful you can wear a helmet for short periods in order to toss a lacrosse ball around with your friends! 

Living in the Moment

So many people ask us how do we do it. I'm not sure exactly which "it" they are referring to, but I think usually "it" refers to keeping our optimism in the face of a seemingly endless stream of heart wrenching set backs and complications.  

Sometimes finding some humor in the situation helps and fortunately Forrest, you are blessed with this amazing gift.  Sometimes it's blind faith, ours or often a friend"s faith that there is a plan, a higher purpose  that will carry us through the toughest times.  Often for me it's taking time every day to be mindfully grateful.  No matter what the situation we can always find something, usually many things if we try, to be grateful for. The mindful part means I count them, repeatedly.,, out loud. 

Right now this minute I am so grateful that you weren't alone when the seizure overcame you. Tami was right by your side and knew what to do. Austin was within earshot and responded to her call for help. I was in the house on a conference call.  Those on the call heard me shout call 911 and called your Pops clinic to alert him.  All these things I am grateful for.  We still had all the emergency equipment in the Man Cave. Things we had thought we should donate or send back. I'm grateful we hadn't  gotten around to it!  I'm grateful for the Middleburg Fire and a Rescue EMTs, doctors, nurses and  specialists who helped ensure your safety. I'm grateful that you're home and not back in ICU! 

It's terribly hard to see you lose some ground in your speech and balance, cherished gound you have fought so hard for.  I'm grateful for the ground you kept and I know with your indomitable spirit and the love, support and faith of your family and friends, and your extended team of determined specialists, you will reclaim this ground and then you will set your sights on the next horizon. You have proven your strength again and again. You are The Come Back Kid.  And already you are on your way again.  

Since your seizure on Tuesday, you have been to Pilates with Kay, dog agility with Nancy, PT with Del, started a new on line college class with Tami, hung out with Shayna and Austin, enjoyed your Pops steak, and beaten me at cards!  

There is much to be grateful for!!!

Love,

Mum

Back at PT, regaining your strength and balance, with Del! 

Unexpected Moments 6/2/15

It's been a crazy few days. On Sunday were blessed with many terrific friends showing up for the first ever Brightwood pool party. The picture below captures some of the friends that could make it.  We are grateful every day for the incredible friends we are surrounded by.

Today, however, Forrest had a grand mal seizure, including 20 harrowing minutes of non-responsiveness and scaring us all severely. Middleburg Fire and Rescue responded to my 911 call.  Once in the ambulance, Forrest began to bounce back.  Though he still had some left sided weakness, he regained his voice, and was explaining Toliver to the EMT.  Toliver, who was as concerned as the rest of us, rode in a car with Tami to the hospital.  After a CT scan and blood-work at the Landsdowne ER, the doctors consulted with Forrest's team of specialists and ruled out the worst complications.   Currently there is not a specific trigger identified for the seizure. The Keppra level tests are still at the lab, and may lend answers, but it's not likely. We are home tonight and for now we are back to taking night shifts sitting watchful by his bedside.

Life is uncertain. Cherish every moment with your friends and family! I'm amazed at how quickly 44 bounced back. On the ride home he was taking off his heart rate leads from the hospital and attaching them to Tami's forehead as she drove home. His humor and wit is in full effect.

-Austin and Team 44

Opening pool party

Toliver was ecstatic to be reunited with Forrest today in the ER

Forrest kicking butt at Angry Birds while waiting for a doc. 

Breaking out of the hospital!