Friday, November 30, 2012

Unfortunate Detour 11/30/12

Forrest developed a tiny opening in his scalp scar today with a little bit of drainage. We took him to WHC in DC this afternoon and the neurosurgeon & plastic surgeon examined him. Forrest laid a big smile on them and handed Dr Armonda a Team 44 bracelet. They were both amazed by how great Forrest looks and how much progress he has made. They did decide unfortunately that the best thing for Forrest is to admit him Sunday for a Cat Scan and exploratory surgery at 7:30 am monday. They plan to keep him in the hospital a few days until they get cultures back. We are lucky we caught it early. We are hoping and praying it is superficial, just involving the scalp and not his prosthetic. He is strong now. Together he and his amazing Team, which includes all of you, will beat this and he will be back on track soon. We will post more when we have more information.
Love. Rae
Sent from my iPhone

Wednesday, November 28, 2012

picture of the day and forrests first post

  Today marks a historic day for Forrest and his blog on several accounts.  Since Forrest continues to have episodes of motion sickness, his ability to travel is quite limited.  Part of overcoming this condition involves taking short trips on days when he is feeling well (and the weather and roads are good!).  Fortunately, with the aide of his nurse and his support team, Forrest is able to make it to several places that are close to home and familiar to him.  Today, we took advantage of the sunshine and made the short trip to town to visit The Common Grounds where he was able to see long time friend Alix.  We were joined by two of Forrest's amazing aunts and his Grandma Norma.

The blog has been an important lifeline for Forrest and his team to stay connected to friends, family and community.  Today, for the first time ever, Forrest had an active part in updating his blog.  From signing in to uploading the photos to writing the headline and photo captions, Forrest used his improving fine motor skills with his right hand to maneuver around the blog and his computer.  Once he finishes typing his photo captions, Forrest will push the "publish" button to post his very first entry! 
we're amazing! with alix

family is splendid

Saturday, November 24, 2012

Thanksgiving 2012

We have so much to be thankful for, Forrest. Last year we were thankful that you survived another devastating setback and your aunts & uncles brought carry out turkey and loads of love to share with us at NRH where you had been hospitalized for almost 6 months.

This Thanksgiving we are blessed to be home together, surrounded by friends, family and The Medical Team's ever vigilant nursing staff. While you're not yet eating, you are clearly nourished and sustained by their love, faith, and encouragement. You are reenergized by their enthusiasm for your progress and do your very best physical and cognitive work when they are by your side cheering you on! Below are some highlights from the week, including your first stroll in the grass, appropriately in your Grandmother Boo's Memorial Garden, with your family celebrating this milestone! Another of you standing tall with Peter & Mat sporting a new hat Peter gave you and one of you teaching Sarah, Keith & Madison how to "talk" with your Dynavox! With love to all your friends & Thanksgiving for our many blessings, Mum

Sunday, November 18, 2012

Update 11/18/12

Inspite of the complex medical challenges you face every day Forrest, you continue to amaze & inspire all of us. Two months ago when you were struggling to open your fingers you began the arduous task of communicating with the only tool available to you, a gaze activated communication computer. It gave you the tiniest crack in the seemingly insurmountable wall between you and your world. As you began to control the computer with your eyes the most amazing thing happens... You begin to stretch out your fingers of your right hand on the keyboard searching for letters and words. For weeks your double vision sends your fingers to the wrong keys. Then suddenly a connection is made somewhere in your healing neuromuscular pathways and when those pathways fire, you type out whole sentences. This week when Austin asks you how you are, you type "Brilliant!" adding, "No one or no thing can stop me." and you are right! Especially with a brother like Austin and your core group of friends by your side!
Below are a couple of highlights from the week: The difficult work of standing tall and battling your unpredictable cardiovascular system is made more manageable with Sarah's encouragement! Visits from faithful friends like Peter are so much fun for both of you now. And their presence motivates you to keep pushing your physical boundaries and to share your thoughts using your Communication devise. We remain eternally grateful for your brother's unshakable determination and your friends' love and belief in your future. With hope, faith & love, Mum

Wednesday, November 14, 2012

An Amazing Accomplishment 11/14/12

This week, after more than a year of trying, Forrest is beginning to really communicate with us. He is gaining more control of his hands and particularly the fingers on his right hand. With incredible effort and determination he is typing and it is clearly HIS voice and sense of humor we can see at last. This is his response to Austin today!

And Forrest, your Mum and your whole Team are thrilled. We can't wait to see what you will do next. With love and gratitude overflowing, Mum

Sunday, November 4, 2012

Pictures of the Week. 11/4/22

With careful coordination and loads of support you made it, Forrest to Fauquier Hospital for an abdominal ultrasound. The good news is, you made it there safely and we ruled out lots of bad problems. But unfortunately we still don't know why you continue to have recurrent bouts of dizziness, and emesis that makes each task more difficult and puts you at risk for aspiration. In typical Forrest style you gave the ultrasound technician a thumbs up for her efforts. Then today you proved your determination to beat the dizziness by standing for the first time in our stable next to ThunderJam. "TJ", Austin's retired competition horse, we believe next Spring will gladly be your first ride. There's nothing like the feel, the earthy smells, the quiet strength and confidence of a good horse. He is on your team Forrest and will be there for you when you're ready Darl'n. With love & gratitude for each day of hope & recovery, Mum