Wednesday, June 27, 2012

Picture of the Day - 6/27/2012

Forrest and Team 44 arrived safely at NRH yesterday, with no complications en route! Forrest's schedule has been filled with therapies, testing and consultations. Despite a very busy and tiring day yesterday, Forrest readily shared a smile for a picture with Austin and Tami. Stay tuned for further updates from NRH.

Monday, June 25, 2012

Picture of the Day - 6/25/12

Shayna and Gio come from Pennsylvania and through their enthusiastic belief in Forrest, recharge his batteries and help him prepare for his trip back to National Rehabilitation Hospital. Forrest will spend three days at NRH this week for reevaluation, CAT Scans, and possible readjustment of his shunt.

Friday, June 22, 2012

Update - 6/22/12

Today's entry comes courtesy of guest blogger, Sarah, Forrest's Superstar OT from NRH, that recently visited.

Hi 44,
So it has been almost a week since I was out at "Brightwood Rehab". I am just sitting here thinking about how amazing your team 44 is and most of all, how YOU continue to amaze me! I was greeted by your lopsided grin and your two arms opening up to give me a hug as I came up to say hello - something that you were unable to do just a month an a half ago when I saw you last. I also can not tell you how good it was to see you giving out "fist bumps" to everyone pretty much every time you were asked for one. (I remember you working so hard to give me one back in the winter-limited by tone and a number of other things, and now it is almost an automatic, fluid movement again!) These little gestures not only warm our hearts but I know help to keep you connected with your family and friends that surround you every day and are helping you through this process. And what a team! I must take a moment to say what an amazing place "Brightwood Rehab" is- it really is a rehabilitation center fully running & functioning down in your "Man Cave"- not only with all the equipment (including a very fancy bed I must say!;) but the organization, thoughtfulness and professionalism of a "real" facility. Daily therapy, meds and relax/recreation schedules are set, and even when the schedule is thrown off course-which happens- everyone adjusts, works together and just "rides the wave" without a beat - headed of course, by your amazing #1 fan, aka SuperMom.
Every day is a struggle for you Forrest, I know - and I saw that realization on your face a couple times this past week. I can not even begin to imagine how you are feeling inside sometimes but I know that you know that you have an incredible support system and your own personal "44" drive that will get you through and each day a little closer to doing more and more for yourself. You really are my *superstar* patient. It was great to see you use your arms AND fingers to reach out for your toothbrush, deodorant, tee shirt & even the scratch your own head-Jeez!  The things we take for granted. The other highlight of my stay was watching a video of you giving a presentation on "Dragons". It was great to hear your loud and deep voice on the video and then again to hear you vocalizing in music and speech therapy on command the next day! One step at a time. You see Forrest, although I have never heard that strong voice before or have heard you tell a joke like in you did in the video, I still know you. You are still YOU. You still make people laugh, know how to have a good time and have a positive energy about you that radiates to affect so many people's lives. Just look around you.

I want you to keep up the hard work and remember, you still owe me that dance!!

Sarah, your forever fond OT

Wednesday, June 20, 2012

Update - June 20, 2012

    To start off todays update, we want to introduce you to Team 44 member, Tami Erickson.  For those of you who haven't had the pleasure of meeting Tami, she is the newest full-time member of the team and has become an integral part of Forrest's core team. Tami makes things happen for Forrest.  She follows up on the many therapy sessions Forrest goes through and creates new ways for him to practice word identification, physical therapy, and music therapy as well as making smoothies and making sure we don't run out of crucial supplies for 44. Most of all...Tami believes in Forrest.  She encourages and challenges him in ways that only she can.  Thanks Tami.
    Forrest continues to work hard at home.  Just yesterday, with assistance and a lot of encouragement, he did ten squats on the tilt table!  He continues to regain control of his hands but struggles when trying to move his arms and legs.  He still fights the tone that makes it difficult for him to reach his hands to his head or gain fine motor control of his fingers. But he continues to try every day and so is slowly making progress on all fronts.
His days continue to be filled with speech therapy, occupational therapy, physical therapy and activities that Team 44 create for him.  He is still on a large amount of medication and continues to be at risk for throwing up and pneumonia.
    Certainly the most fun Forrest enjoys is regular visits from his friends, since summer has arrived and they are back from school.  We would like to thank you all for coming on a regular basis as your presence has reinvigorated his spirit and lightened his daily burden. Thanks especially to Nick who helped organize the gang so that Forrest has a friend to look forward to each day.  He also enjoys moments of standup comedy and bloopers on YouTube as well as interesting movies with his team of nurses, therapist's, friends and family. All of these things can bring a smile to his face. Sometimes he's just too tired to smile but given enough time and encouragement, the good old Forrest smile always comes back.  We also want to thank Sarah for visiting him.  Sarah had helped Forrest as his occupational therapist at NRH for months and saw him through really difficult times there.  She moved out of state but flew in to visit him for a few days last week.  She gave us new insights and encouragement.  She was excited to see his progress since coming home and was enthusiastic about his potential for future progress.
    Mom, as always, keeps up with Forrest's therapy, medical scheduling and generally everything that is involved with him.  She occasionally gets on a horse to keep her mental and physical balance.  Austin is working hard in D.C. as a consultant to a construction project at the National Zoo and then comes out for long weekends and continues to help and encourage his bro.  Someday we hope to report to you about Forrest walking, talking, eating and heading out with his friends.... But right now it's slow, sometimes unsteady, small steps that keep him headed toward the big ones. We know he will do all of these things again one day and that belief keeps us all focused on what we can do now to get one day closer.

With much appreciation to all his friends and fans out there, 
Sincerely, Dad and Team 44

Tami always encourages Forrest to try something new every day

Monday, June 18, 2012

Picture of the Day - 6/18/2012

We were blessed with precious family time in our great room on Fathers Day. The boys gave Kent the movie "Act of Valor". Watching it together, we were reminded of the many acts of courage, kindness, and generosity that have enriched our lives. With love, Mum

Wednesday, June 13, 2012

Tuesday, June 12, 2012

Picture of the Day - 6/12/12

Forrest begins using his fingers during paintball therapy with Matt's encouragement & Sarah's therapeutic expertise!

Friday, June 8, 2012

Picture of the Day - 6/8/12

Corina and Maddy teaching sorority hand signs as part of Forrest's efforts to improve his hand coordination.

Thursday, June 7, 2012

Picture of the Day - 6/7/2012

Everyday, for hours on end, Forrest and Tami work together as Forrest battles to regain those skills that most of us take for granted.

Tuesday, June 5, 2012

Monday, June 4, 2012

Picture of the Day - 6/4/2012

Forrest is working hard on improving his visual tracking, recognition and discrimination.

Sunday, June 3, 2012

Picture of the Day - 6/3/2012

It took five people and an electric lift, but Forrest enjoyed his hydrotherapy in the jacuzzi today!