Forrest is resting quietly. We don't want to incite panic or start a revolution (there's enough in the Middle East to go around)... but on days when Forrest is doing well and not much is happening, we MAY... not post an update that night. We'll make sure to update everyone every other day at the very least. As much as we love updating you all and hearing your uplifting words, inspiring comments, and funny stories, we're also trying to manage our time and get sufficient sleep so we can be upbeat and positive for Forrest during the day. Today He had a good day of therapy, Aunt Lobie arrived to help us out over the next week, while Dad had to return to the Farm. We'll post some cute pictures in tomorrow night's blog.
Thanks for the wonderful feedback, messages and updates from friends and family! As always this daily interaction is a huge help to Forrest and his Team. You help keep us charged up and connected to all the folks we are missing!
As Forrest continues to make such remarkable progress here at Shepherd, we have made the difficult decision to remain in Atlanta for Forrest's first leg of outpatient therapy. We have toured the facility that houses Shepherd's outpatient program, Pathways, and are impressed and inspired by their Adolescent Outpatient program. As excited as we are to get started on this next stage of his recovery, we are sad to remain separated from Forrest's and our friends, home, and the farm, and we hate to miss Springtime in the Virginia countryside! But the first 6 months of recovery following a severe brain injury are the most critical and we are certain this is the very best place for us to be for the next 2-3 months.
Currently we are still in the ABI Unit and are blessed to be surrounded by Shepherd's team of talented and caring professionals. Their dedication and passion for their patients are incredibly inspiring. They have given us hope and courage and a sense of pure joy as Forrest responds each day to their love and encouragement. Below is a collage of just a fraction of the team who is working literally around the clock to support Forrest's recovery and return to Middleburg. We are truly grateful to those who have donated in Forrest's honor to the UVA TBI research efforts.(thank you notes ARE on my long to do list!) As friends and family continue to ask what they can do to help, we asked Shepherd for information about their Foundation. The following information has been provided by the Executive Director of the Shepherd Center Foundation.
Shepherd Center operates the only adolescent program of its kind. Early specialized treatment often translates into earlier recoveries. Shepherd treats young people from across the country and around the world from ages 12-19 with brain injury and/or spinal cord injury. Schoolwork is a top priority for teens at Shepherd---while patients are here, tutors help students prepare to re-enter classes in step with their classmates. And prior to re-entry, Shepherd sends a representative (to serve as his "bridge") to meet with student groups back home to let classmates know what to expect when their injured friend returns to school. While all patients benefit from over 20 donor-funded programs, up to one-third of adolescent patients may be in "scholarship" beds. The Adolescent Program provides therapeutic recreational activities such as animal-assisted therapy, basketball, boating, camping, swimming, SCUBA, shooting, and many other sports. These crucial programs are fully funded by gifts. In addition, the Adolescent Program patients practice reconnecting with the outside world through supervised outings around Atlanta to sporting events, shopping, movies, and more typical teenager activities. Shepherd Center also operates the Virginia Crawford Research Center where the latest brain injury and spinal cord injury research is translated into patient care and rehabilitation.
If you would like more information or would like to make a donation to Shepherd in Forrest's honor, your gifts will help ABI patients who are underfunded or unfunded by private insurance or governmental programs.
Forrest has been fortunate to have 3 visits from amazing therapy dogs during his hospitalization. It’s no surprise, as a lifelong dog lover, that he really connected with these wonderful canine “therapists!” We also marveled at the powerful impact the dogs’ visits had on other patients and on all of the hospital staff. We envision the day that Forrest, healed and healthy, is able to take his own dog to visit hospitalized children, to share his story of recovery and the special joy that a dog can bring to children. So it just seemed natural to prepare our own beloved Labrador, Sundance, to become a certified therapy dog. Especially since Sundance had the advantage of early training with Colleen Hayduck, our star CCI volunteer puppy trainer. Kent jumped online and found us a TDI (Therapy Dog International) certification test in Georgia, but the clincher was we only had 10 days to prepare for the test! No problem! We can do this! Kent drove Sundance down to Atlanta so that he could take a refresher obedience course with a local trainer at Comprehensive Pet Therapy. And just to make sure we were ready, Colleen volunteered to drive up from southern Georgia yesterday to tune up Rae and Sundance prior to the exam today.
Early this morning the team gathered in Lawrenceville, GA for the event. It was tension packed. 30 dogs were being run through a grueling human and animal gauntlet which demanded total concentration of the handler (a very nervous Rae) and the gorgeous wanna-be therapy dog (Sundance). Both had to overcome multiple simulated distractions, loud deliberately obnoxious people swinging crutches, zooming circles around them in out-of-control wheelchairs and walkers, barking dogs, groping strangers, squealing children, and tempting hamburgers on the floor that Sundance had to pretend he didn’t even see! All these challenges are necessary to insure that a certified TDI dog can maintain his cool no matter what a hospital or nursing-home environment throws his way. Somehow the stars aligned at just the right moment, we drew a kindly evaluator who gave us a fair shake and Sundance gave it is his very best effort, turned his nose up at the hamburger, smiled thoughtfully at the squealing children, and did NOT jump in the man’s lap who clearly invited him to share his wheelchair! I have to admit I was totally surprised, but ….We passed! Sundance earned his TDI certification, official patch, and TDI bandanna that will allow him to share with other hospitalized children who, like Forrest, would love to receive the joy of a wet kiss, warm fur, and that unconditional loving gaze of a Labrador Retriever.
Of course this victory demanded a celebratory visit to Shepherd Center’s Secret Garden so that Sundance could share the great news with Forrest and let off some steam with a proper game of fetch! After Forrest and Sundance played fetch for awhile, several of us played catch with Forrest, both hands, single hand and then right and left hand… Forrest beat us all.
- From Rae and Sundance (certified therapy pair) and the rest of Team Forrest (which included today, super brother Austin, Dad this weekend and Monday and Colleen, super dog trainer).
PS from Sundance: I’d like to thank all the two-legged friends who made it possible for me to reach this cool goal today! Deep Run retrievers gave me a strong start, Robyn for keeping me at the Farm, Pops for driving me to Georgia, Aunt Lynn for all the late night walks, Patricia at CPT, Colleen, and Vangie who made space for me at the TDI test!
It's hard to imagine it's been six weeks today since the accident, but today was a great day. I was cleared to walk him around the ABI unit on flat surfaces (as his balance and coordination improves we'll be cleared to take him off of the 2nd floor and around the garden outside). Mom wasn't able to be cleared as she is still in a walking boot from her fractured ankle 7 weeks ago. She was jealous.
He's walking really well, he still occasionally gets a little off balance but corrects pretty quickly. His coordination is improving so should be able to consistently walk over obstacles and up and down stairs in the near future. Again his physical improvements are way ahead of his cognitive progress, but everyone assures us the physical progress comes first. We're celebrating every little step forward, as we know you all are celebrating with us.
On an entirely unrelated note, if anyone near Middleburg, VA has experience with large aquariums (preferably experience with sumps) and is interested in offering assistance with a water change at the Farm I'd greatly appreciate it! Email me at firstname.lastname@example.org. I have a 180 gallon African Cichlid freshwater tank that needs a water change in the next week or two and would love to have someone familiar with aquariums helping!
Love from Atlanta,
Austin and Team Forrest
Forrest and I walking
Mom proud of her boys after our spin around the ABI unit
Forrest was visited by some great friends from Middleburg, Jim and Gail Wofford. They drove almost three hours from Thomson, GA. We were treated to a wonderful dinner where we talked civil war battlegrounds and future trips with Forrest including fly-fishing Alaskan rivers. At this point we’ve promised him just about everything.
We brought him key lime pie after dinner which he wolfed down. In an attempt to reduce how often he is restrained and the associated anxiety, he has been assigned a “tech” who is with him 24 hours a day, in 12 hour shifts. It’s been a great development. He has someone with him when Mom and I can’t be, and it’s letting us get onto a normal sleep pattern which is terrific. His “posey” belt that was previously mentioned was replaced today while he is in his chair, which makes us much more comfortable as he can only stand up when the belt is unlocked by a nurse.
He practiced more walking today, and his therapist had him walking while looking left, right, down, and up, practicing on improving his balance. The video below shows just a bit of the practice, but his characteristic grin is there in full. After the walking practice she had him walk over an obstacle course and then carry the blocks back to the gym. He’s gonna sleep well tonight!
Forrest ate well today. For dinner we brought him panera soup, based on his earlier comment wishing he had panera. It's not a stretch to say he was the envy of the dining hall tonight. We also brought him chocolate cookies to dip in milk for dessert, which he loved.
The Doctors tried today to see if his restlessness was caused by his restraints. They took off the "posey" belt, which previously was around his waist all the time when he was in his chair. Only nurses and therapists have the keys to unlock the posey belt and allow him to stand up and walk or do some other activity. Today he was without a posey belt, and seemed to realize it. As soon as I turned my back to get his DVDs he was stood up and was trying to get in bed. I was holding onto him as quick as I could, but he will probably have to go back into his posey belt to keep him from hurting himself. He still dramatically overestimates his abilities and balance.
He is showing dramatic physical improvements, he can wheel himself about the ABI unit quickly. He is also able to walk up and down stairs with only one person holding onto his arm. He's able to brush his teeth, eat meals, clear dishes, and perform other daily chores with minimal instruction. His voice is coming back, slowly but surely. His sentences still show signs of Fluent Aphasia (not making sense even though individual words are correct) We are still waiting for his Posttraumatic Amnesia to go away, which will mark a significant milestone in his recovery. Overall he's making progress and I'm looking forward to being certified tomorrow to help him walk around the unit. This weekend when he has a rest from therapy it will be great to be able to go on walks with him. We'll see how long he tolerates his big brother's help.
Thanks for all the wonderful comments today! We loved hearing from you and receiving more stories and messages to share with Forrest. We feel so loved and supported by our amazing families and friends.
Just over five weeks ago we were thrust into this journey without a road map or compass and with no real understanding of the bigger picture. We were living hour to hour in survival mode for the first few weeks. It's time now to try to share with you the big picture as we are coming to understand it. His incredible gains in balance and physical strength and his early ability to speak and write are remarkable blessings, but he has yet to fight his hardest battles.
Forrest continues to reach out to his caregivers and his wonderful sense of humor is intact. As he becomes more aware of his surroundings and more active, he is entering a stage that includes periods of increasing confusion. One example occurred today when he and I were exploring around the gym. Forrest wants to open all the doors, so we went through a door which led into a stairwell. He tried to go down the stairs in his wheelchair. I told him we couldn't go down the stairs in the chair but he was determined and whispered "of course we can, I'll show you." I had to physically pull him away from the stairs. We are learning that this confusion and lack of decision making ability is expected at this stage in recovery, and reminds us how important diligent oversight and supervision is.
"A certain degree of frustration and restlessness is a motivator and is a good sign at this stage," one of his Doctor's explained to us today. Unlike the movies and popular media, it's important to remember that individuals recovering from TBI (traumatic brain injury) don't have dramatic awakenings. Instead, with the support of medical staff, friends and family, they progress sequentially through increasing levels of awareness. TBI's are categorized as mild, moderate, severe, or catastrophic (remains in vegetative state). Forrest's injury, based on his initial coma scale, cat scans, and MRI's, was a severe TBI.
The Rancho levels are a common way of assessing the current status of a recovering coma patient. They range from 1-10, with 1 being non-responsive and 10 being the highest level of recovery. Despite his severe injury, it's important to remember that he's made an amazing recovery so far, beginning at Rancho level 1, and having progressed to level 5, while demonstrating some behaviors of Rancho 6. At Rancho 5 he shows certain moments of appropriate behavior and effective communication, but he is often confused and out of touch with the present situation.
Here are the symptoms associated with patients at level 5:
Level V - Confused, Inappropriate Non-Agitated: Maximal Assistance
Alert, not agitated but may wander randomly or with a vague intention of going home.
May become agitated in reponse to external stimulation, and/or lack of environmental structure.
Severely impaired recent memory, with confusion of past and present in reaction to ongoing activity.
Absent goal directed, problem solving, self-monitoring behavior.
Often demonstrates inappropriate use of objects without external direction.
May be able to perform previously learned tasks when structured and cues provided.
Unable to learn new information.
Able to respond appropriately to simple commands fairly consistently with external structures and cues.
Responses to simple commands without external structure are random and non-purposeful in relation to command.
Able to converse on a social, automatic level for brief periods of time when provided external structure and cues.
Verbalizations about present events become inappropriate and confabulatory when external structure and cues are not provided.
To see the levels he's come through and the challenges ahead of him, you can read more about the Rancho levels at http://www.braininjury.com/recovery.html. We've received requests for information resources. A great book we're reading is Mindstorms by John Cassidy. Reading these resources helps us understand his challenges and better support his recovery.
Forrest has made remarkable progress and he will make it all the way back to us. He will hit some really difficult times during his recovery and some days he will be discouraged. The more we understand the journey ahead of him the more encouragement and support we can offer.
Before we share the news from Forrest's day, his team wants you all to know how much we enjoy your messages back to us. In fact, WE all check first thing every morning to read your comments! You may not realize how much we count on your feedback to keep us charged up and how often we read your messages with Forrest. We hear all the time how many people are following his progress and how people are depending on the daily updates. Since some folks are having trouble commenting, we thought we'd review how you can send a message back to Forrest or his Team. While his Team loves hearing from everyone who cares about Forrest, he really takes strength from each message from his peers; we hope that his peers will continue to reach out to him here or on his peer Facebook site.
There are two ways to comment. The best is to sign up to follow his blog (and the # of followers is encouraging to him) You can quickly create a google or yahoo account, then click "Follow" on the right side of the blog to sign in with your account. If you have trouble call Austin (540 729 2620). This is a great shortcut that allows you to post comments quickly.
Alternatively, you can click on comment at the end of the currents day's update, type your message in the comment box, choose "anonymous" and please sign the message. After you click "post comment" you HAVE to wait a moment until the word verification pops up. Then you write the letters shown in the funky font into the word verification box and click submit. This is a mandatory protocol that prevents spam.
SO back to today. Forrest moved up from pureed hamburger that looked a lot like cat food to real Mac and Cheese!!! AND Forrest actually strolled briskly with the support of two therapists all the way around his unit (for comparison check out the 2/ 11 update, 12 days ago!) and he successfully tackled his first stairs! He was exhausted and had to sit down to catch his breath, but he did it! Check back tomorrow for information about ABI recovery and some really fascinating resources…
Love to all,
Mum & Team Forrest
Quote of the day "Do Miracles happen? Yes they do. The Miracle sits on top of a great big pile of small accomplishments." Mark Palmer former ABI patient
There's nothing like the smiling faces of friends to brighten up your week-end! Yesterday's visit from the Selfes had all the makings of a family reunion, since our kids have grown up together and our two families have shared multiple dive vacations over the years. (Many thanks to our gifted guest editor, Brian Selfe!) Sunday afternoon David and Catherine Rochester drove all the way from Aiken, SC to visit which was another awesome pick-me-up for Mum. It was fun just running an errand to CVS and delightful to go out for lunch with friends from home.
And to add excitement to Forrest's day, Colleen Hayduck and Richard Roberts drove 3 1/2 hours to bring 2 of Colleen's service dogs in training to visit. They lit up Forrest and the whole hospital! There really is something magical about a yellow lab's loving eyes, silky ears and gentle touch. And nothing is quite as invigorating for a hospital bound youngster as a game of fetch with an enthusiastic Labrador. Colleen has such a way with these CCI puppies. They are so composed, willing, loving and just breathtakingly beautiful dogs. We don't think it is coincidental that after an afternoon shared with 2 great dogs, Forrest's appetite was, for the first time, strong enough to clean up all the mystery potions they pass off as "dinner." It’s a very good thing, because at 3:30 this morning, Houdini Forrest managed to slip out of his "mittens" and pull out the feeding tube that has been delivering his nutrition directly into his stomach for the past 4 weeks. Thankfully, no serious harm was done and hopefully his new found swallowing prowess & growing appetite will convince the doctors to remove it in the near future. The hole in his neck from the tracheostomy is healing quickly and though air still escapes from around the bandage, we expect that to resolve in a few days which will allow his speech therapy to progress.
The sadest part of the day was Dad's departure for home. Throughout this journey Kent has been Forrest's most devoted warrior and champion. Although a teenage son & his father don't always see eye to eye, Forrest & Austin have always known in their hearts, if they were ever in trouble, there is no one better to have at their side than Kent. We miss you already, Pops…
Love to all our wonderful friends and family,
One very blessed Mum
Forrest playing fetch
Colleen Hayduck, Richard Roberts, Mom, Austin, David and Catherine Rochester, Forrest, and the awesome labs
Encouraged, Humbled, Inspired. These are the three words that come to mind after spending the afternoon with Forrest, Austin, Rae, Kent and Lynn.
Encouraged describes Forrest’s progress. We linked up with him after his morning of rehab and therapy and found him in a family lounge playing catch and cards with Aunt Lynn. Austin introduced a Nerf “dart” gun ( a six shooter) which entertained us all for some time. Alternating between catch and shooting at Austin and Aunt Lynn, we were treated with Forrest’s giant smile and, from time to time, his mischievous grin. This was followed by a trip to the garden where the games continued. With the tracheostomy tube removed, Forrest is beginning to attempt to talk more. As the tube was just removed yesterday, he mostly whispers. At one point when his whisper was difficult to hear, he wrote a message on his white board to “hand me the Wilson card,” a card on the ground he was looking at. Forrest is definitely reading and writing quite well.
Humbled. This best describes my emotion after spending the day with Team 44. I cannot begin to fathom what the past 5 weeks has truly been for this family. Aunt Lynn left her life in Colorado and has spent the last several weeks doing whatever needed to be done for Forrest, Kent and Rae. I do mean whatever needs to be done. Austin, recently graduated from William and Mary, has simply pushed the pause button and is completely devoted to Forrest and his recovery. His patience, kindness and tenderness as he ministers to his brother is amazing. We should all aspire to be the brother or sister to our siblings that Austin is to Forrest. Rae and Kent are rock solid. They are the perfect role models for Forrest as he continues on this journey back. One foot in front of the other, and don’t look back.
Inspired. This is the lasting feeling from the visit. I am inspired by Forrest as he works each day to recover and by Team 44 as they are there to support and encourage him. While the journey ahead is long and there will be ups and downs along the way, this Team will reach the summit and will look back on this time and be proud of both the journey itself and the way that they made it together.
-Brian Selfe and the wonderful Selfe family that visited Forrest today (this part edited by Austin)
Forrest had a very good day today. It started with him trying and almost accomplishing getting out of bed this morning trying to go to the bathroom but happily no harm was done and more stringent procedures to keep him in bed were instituted tonight. We had a good talk with his lead Doctor today and the final opinion was to pull the tracheostomy tube which happened at noon today. This has made him vastly more comfortable and reduced his coughing substantially.
He had a good breakfast, if pureed eggs and watery oatmeal can be considered as such. He started with a rigorous PT and speech schedule in the morning and then had his casts cut off in the morning and turned into splints that he wears at night to keep his ankles and calf’s stretched out.
He went to lunch and they tried him in a standing contraption to eat which he distinctly did not like. He asked to be let down out of it and the therapist’s complied and took him for a long walk in a stroller instead and he did very well walking almost normally. He then chowed down on pureed hamburger and mashed potatoes and gravy with pureed pears and his comment to me was “ We’re not at Panera Dad!”
Since he had his trach tube out he now gets to get beyond the confines of the 2nd floor. I took him out this afternoon and strolled him around and he did ok but brain trauma patients in the Rancho 5 scale get confused and agitated on occasion and which elevator we got on confused him greatly. We weathered the storm together and eventually got out to the garden adjunct to Shepherd Center and then later when the recreational therapist and the rest of the family came he enjoyed himself in the sunshine and played catch and rolled himself cross-country and had a grand ole time.
We all then went up to watch a wheelchair Rugby tournament in the Gym that was amazing to watch. It was full contact with specially armored wheelchairs and looked like a cross between Rugby and soccer. Those games went on all afternoon and evening and we went back after dinner to watch it again. While we know he will not need a wheelchair in the long run, it was both amazing and heartening to watch serious athletes in wheelchairs and how hard they work and he enjoyed watching.
So a tired big boy finally gets back in bed after a busy and successful day that had drama but several notable successes. We hope he stays there and the bed and meds have been adjusted to help him have a good night’s sleep. We will check on him of course but bed alarms and nurses are all on the alert. We hope he passes through this confused state as rapidly as he has passed by the others. One of the nurses told us that they are not used to seeing patients progress through the various physical and mental stages as rapidly as Forrest has been doing. We know that there are still plenty of hardships ahead but after a day like today you can’t help but be very hopeful and feel blessed to help him through them.
The quote of the day is once again from a coffee mug I bought my superstar Mom (Rae). “Life isn’t about finding yourself. It’s about CREATING YOURSELF.” This is obvious every day here at Shepherd. Out there in the real world we are all trying to find ourselves, to little avail usually. In here, you watch Forrest and others recreating themselves from the ground up and are astounded by what they can do and overcome. It makes you slightly ashamed at what most of us gripe about in the real world from day to day.
Written by Kent but with all the real work being done by Mom, Austin and Aunt Lynn. Thanks to everyone who reads it and suffers through our rough times and celebrates days like today with us. Thanks most of all to Forrest who after Aunt Lynn showed him everything he did on his schedule today said, “So tomorrow again”? Always with a grin.
Forrest had a great breakfast this morning. Following breakfast he had his casts cut off and reapplied. As his ligaments and muscles get realigned, he should soon be in a removable set of casts that he only needs to wear for part of the day. He had a good lunch, unfortunately followed by a coughing spell that caused him to gag and lose his lunch. He's still getting used to the new trach and his airway is still sensitive. The docs are deciding whether his trach can be removed before his lid gets put back on in a few weeks, since he will need to be intubated and the tissue in his trachea needs to be healed before that happens. It may be the safest course to wait until after the surgery, that decision will be made soon.
After lunch he had more therapy, including playing Wii bowling standing up (while supported)!! His therapists met with Mom and Dad to have a goal setting meeting today. They discussed areas of rapid improvement (his muscles, physical stamina and coordination, and his speech), and areas that need particular focus (his orientation of where he is, his focus and short term memory). They reminded us that it's still early in the game and he's made remarkable progress in the last couple of weeks.
The least fun part of his day was the endoscopy, where one of the respiratory specialists examined his upper airway with an imaging device. They're still concerned about his larynx, trachea, and upper airway. The examination seemed to suggest his upper airway is improving. Luckily he has an excellent cough which is important to clearing mucous and protecting his airway.
He's sleeping soundly right now. The Doctors have adjusted his sleeping medicine so that he sleeps longer at night. Right now he's surrounded in about a million pillows and looks pretty darn comfortable.
Austin and Team Forrest
I figured Sundance should make the blog. He's being trained to be a therapy dog while we're in Atlanta. He's currently staying with a trainer and working toward impeccable manners. He has a genuine heart of gold and does wonders for everyone's spirits. Here's a picture I took when he and I took a walk in the park... typical Sundance.
Forrest slept badly last night but that doesn’t change the therapy schedule so he was up and at it this morning. He seemed a little down during sessions and meals today and couldn’t do his last group session. We have to expect some down days and steps back coupled with all of his amazing progress and compared to where we started a couple weeks ago.We had a really good discussion with him this evening with him asking about his new face. We reassured him that it is the same old Forrest face as handsome as ever once they put the top of his noggin back on. We also assured him all of his parts work and that he is making tremendous strides. The lid replacement is scheduled for about 3 weeks if all of the swelling in the brain is subsided.
He is having trouble with his trachea tube and it keeps slipping out without him grabbing for it. The Doctor came in to see the problem and had respiratory therapy techs replace it with a longer more flexible one. When it was put in he lapsed into a coughing spasm for so long he threw up which is worrisome and difficult to watch and help with. He didn’t appear to aspirate anything which is great news. We have him on his side so he can vomit more safely and after retching he pats each of us to reassure us since he can see the worried looks on our faces. Typical Forrest that he is in the midst of a drama and is worried what the people around him are concerned about. He is trying so hard to be brave and not worry us that he makes us cheer up when we start to get worried or depressed.
After the problems this evening and a new group of nursing staff that doesn’t know him as well, we decided to go back to all night monitoring with Aunt Lynn (who cooked us dinner) and Austin (posting this blog) are taking the night shifts so Rae and I can attend the meals and some of the therapy sessions tomorrow and participate in the goal setting session. Slightly frustrating when you think those days are behind you and then at a moment’s notice you are right back to it.
Rae and I toured the Shepherd Pathways which is the outpatient center for Shepherd. It is in a slightly different area of Atlanta and seemed very nice. He could hopefully move there in about a month if things continue to go well. We also toured a canine school with Sundance so he can make his first steps toward becoming a therapy dog and helping both Forrest and other people in similar circumstances.
Quote of the day from a movie that Forrest, Austin and I watched tonight. One of our favorites, Galaxy Quest. “Never give up…Never surrender”! Tim Allen
Forrest had a grueling trek from the gym back to his room on the walker assisted by two physical therapists today. The extended period of "altitude" he experienced being upright seemed to make him a little dizzy and he struggled with the weight and bulk of the casts. But they are pushing him harder this week. He moved right from the walker to a "roadster style" chair that allows him to shuffle his feet along while he turns the wheels with his own arms. More important steps toward independent movement! He was spent after an 2 hours of therapy and had a hard time with lunch. It is not unusual for ABI patients to struggle with swallowing and with keeping food down.
Austin went with Forrest for a 3-dimensional cat scan of his skull this afternoon. They taped Forrest's poor head to the table causing him understandable distress. He actually whispered to Austin," take it off." Once they repositioned the tape and made it more bearable, he gave his brother a double tap on the shoulder and proceeded to be a real champ for the rest of the procedure. The 3-dimensional CT will be used to create a model of Forrest's skull in preparation for this next surgery, which is tentatively scheduled in 3 weeks. He did better eating tonight due to a little healthy sibling rivalry. He was bored with eating pudding by himself so when Dad handed him yet ANOTHER spoon of pudding he passed it on to Austin. Austin declined to share his spoon, but took a fork and dipped it into Forrest's pudding. They eyed each other over the unappetizing pudding and Forrest whispered "1…2…3…"
Forrest today is not only the topic of the blog, surprise,surprise but he is also the speaking star of the day. So you have to wait for the words but obviously the point is he spoke! So an amazing day overall.Lots of things going on. Sarah stayed this morning and left this afternoon after Delta cancelled her flight. Forrest so enjoyed seeing his good friend yesterday and today, they had a great conversation, with Sarah obviously doing most of the conversation.
During speech therapy today, he started speaking. It was very faint, since he was trying to talk around a tracheostomy and it was the first words he’d said in 5 weeks. It started with “Sure” on a reply to the speech therapist. Although it was very faint it was definitely Forrest’s voice and inflections. It continued off and on thru the day with Forrest saying goodbye to the speech therapist... "See you later."
Forrest had lots of great things happening today. He ate well tonight and had minimal swallowing problems, already a great improvement from the previous 24 hours. He had a busy day of physical and occupational therapy. He was exhausted at the end of the day.
You can see frustration in his eyes as he still having to wear the uncomfortable brace. He has had some problems with contraction of the tendons in the back of his ankles and so casts were put on his feet from the just below the knees to the toes to help straighten them out. They will get changed out on Friday. Every day is hard and painful for him and filled with frustration. But the amazing part is the kind gentle nature of Forrest is in there. He grins at us when he can and he is sitting there being frustrated, he will look over and touch his Mom’s face . Hard to be too concerned with our role as caretaker’s when he is so kind and gentle both before and after the accident. While Rae is catching up the notes for the Doctor’s meeting tomorrow, I’m writing the blog and Austin is watching Forrest and Aunt Lynn is cooking dinner, great team!
His progress in a week is astounding, I am in awe of his effort and progress. He is my hero.
Quote of the day from Aunt Lynn, “Courage doesn’t always roar, sometimes it is the quiet voice at the end of the day saying, “I will try again tomorrow." Mary Ann Radmacher
Forrest started the morning with breakfast, and he's making progess eating his "food," swallowing, though, is a skill that is going to take some work. I guess the steak in a blender doesn't match up to Ken'ts grilled tenderloin. Unfortunately Forrest has to master the swallowing before the trach can be removed. Today was Rae's birthday and she definitely has some things to be happy about. When I came into the room for the first time, both Rae and Austin were surprised by the smile that came over Forrest's face.
We went to the gym and played around, Forrest, Rae, Austin, and I played catch and Forrest was having a blast "juking" me out and making a fool out of me! Trust me, he definitely still has his sense of humor! When I asked him if he missed me he did the "eh" hand symbol and smiled. Austin and I had a lot of time with him today and we took him into the patient activity room, and there was a TV, white board, and air hockey. He wouldn't nod when we asked him things, but we would write it on the white board and under it write yes or no and he was circling which he wanted to do, at one point the options were between air hockey and watching star wars, and he went with the more active air hockey! He played with enthusiasm!
When he got bored of that we watched Star Wars and started messing around on my phone. He is sometimes reading and understanding what we are writing, I texted for him to see, "How do you feel? Happy or sad?" what he did next was so significant. He started to type "Hpa" but then realized that he was spelling happy wrong and deleted "Hpa" to then write "sooo happy." This is an amazingly unexpected step that is definitely headed in the right direction. Forrest is still having his coughing fits and agitation which are difficult for him, and the trach is more than frustrating. Forrest got to give his mom an awesome present that she loved so much. It had been so great to see him, and he is surrounded by so much love. Everyone here is fantastic and his family are some of the strongest, best, and most loving people I know!
-Sarah and every one from Team Forrest!
PS: Austin and I set up a Facebook group called Friends of Forrest, we would greatly appreciate if everyone could join so that you can upload pictures yourselves. It would be so helpful so that we can show them to Forrest, please make sure to have captions of who is in the picture though, because they don't know everyone!
After an uncomfortable night sleeping in his back brace (which he has to wear all night to prevent further damage to his spine when he becomes agitated and tries his best to pull himself out of bed) Forrest began the morning with his speech therapist, practicing swallowing and eating for the first time in over 4 weeks. He still has the tracheostomy in his wind pipe, so he has that obstacle to work around too. He did pretty well with a few spoon fulls of pudding and pureed eggs, but liquids run too easily down the wrong pipe, setting off a huge coughing spell and a battle for air. Pretty frustrating for a big hungry fella that loves bagel bites and red bull!
After the "meal" was over, I wheeled Forrest back to his room. At the entrance he reached out and stopped the wheel chair, pointing back to the gathering room. Okay, let's go back. We wheeled around the big space, which was eerily quiet on a Saturday morning, looking for something to entertain ourselves. I eventually found the equipment room full of activities, toys and exercise equipment. Rummaging around on the shelves I found a small white board and some markers. Back out in the big room I set us up at a table and began writing and drawing for Forrest. Names, animals, and places and talking about them. At one point, I wrote out my favorite title "Mum" and told him how I couldn't wait to hear him call me "Mum" again. He picked up another marker and added = drew a heart, circled the heart, and underlined "Mum"! Talk about a wonderful Valentine! After I caught my breath, we talked and drew some more and then I asked him, "Forrest, if you could see a friend from home right now who would it be?" He picked the marker back up and wrote Sarrh! (There's no doubt about who he meant... Sarah WB, one of his closest friends since 3rd grade) As hard as Forrest is working, what else could we do but call Sarah and get her on a plane! See ya tomorrow, Sarah!
Forrest played catch today! He and I have been working on it for several days. It started with us rolling a ball across the table, then to him dropping it to me. Then today, when I stood on the other side of his room and asked him to throw it, he chucked it 10' to me! Mom, Aunt Trish and I had a circle going with each of us catching balls he threw to us. He even caught it a few times, he's still working on the coordination, but his competitive spirit is still going strong. Another exciting announcement is that over the last few days he's been working on standing up during therapy. He has a lot of assistance and support from his therapists, but it's the first step in him regaining his strength and balance.
We've been talking a lot about his connection to diving. Today I showed him the "Ok" dive signal, along with "shaka," a hawaiian hand sign that means "hang loose" that he and I use to point out something awesome on a dive. He used both several times afterward. We'll have to see if he uses them in context, but they come naturally to him and he may use them in the days to come to help communicate with us.
Thanks Chris for the "Forrest" shirts. I'm glad you wanted to show your support, but I have to say how glad we are again for you and your father in law's assistance to Forrest on the day of the accident. You kept people from moving him, kept him warm, and protected him until EMT's reached him on the slopes. We can't thank you enough for you being Forrest's Good Samaritans in his time of need.
Forrest remains stable, he's on new sleep meds that are helping him sleep better at night. He's becoming stronger and is occasionally trying to lift himself out of bed. He has a seatbelt across the bed that only the nurses have keys to, but the danger is in him aggravating his L1 spine fracture. Therefore he now has to wear his hard brace in bed, which he's less than happy about because it's not the most comfortable thing in the world. But while he's in a wiggle worm phase (yes I made that up it's not a real phase) the focus has to be on protecting his back and head. He continues to improve and tomorrow will be eating a trial breakfast of some pureed food.
You can imagine that 2 hours of Speech Therapy a day is really hard if you can't speak. Forrest sometime struggles to stay on task and is making a huge effort to understand what his therapist is asking. Today one of the head doctors came in at the end of his session and sat down on his bed to join in. She asked, "Can you to hold up one finger, Forrest?" Forrest had never met this particular specialist, but he obliged her and held up his index finger. Encouraged, she persisted and asked, "Forrest, can you show me TWO fingers?" He was not inspired to respond again, and looked like he might nod off. "Forrest come on, show me TWO fingers!" Forrest realized she is not giving up on this. He reached across his wheel chair tray, took his regular therapist's hand in his and lifted two of her fingers to show the Doctor! The Doctor exclaimed, " I have never seen a patient do THAT before!
After all he's been through, it's a joy to know Forrest's sense of humor is still very much alive.
He made great strides in the eating department as well today. His speech therapist had him drink orange juice (with thickening powder) with a straw and cup. Then she brought out the chocolate pudding, which he was much more excited to see. He fed himself several spoonfuls of chocolate pudding and swallowed. The therapist remarked, "This is much better than two days ago when I was shoving ice shavings in your mouth!" That's the first food he's had in 4 weeks.
He was also very interested in the lacrosse magazine laying across his lap. He spent a lot of time flipping through and looking at the pictures and pointing to some of the larger text. We're gonna get him some scuba magazines to look at tomorrow. We watched the end of Inception, which I still have trouble understanding, maybe he understood it better than me.
In addition to making remarkable progress in his therapy, his medical condition remains stable. The doctors are monitoring his infections closely, as well as continuing to adjust his medications to try to control his increasing periods of agitation. Even though we understand the agitation is a necessary phase of recovery, it's still very difficult to watch.
PS: in the mail today we received a box of pink t-shirts with "Forrest" and "44" inscribed on them. I wore one in the picture today. We're wondering which Chris sent them, please let us know on the blog, thanks. They're awesome.
Forrest and Austin playing ball
Forrest has begun offering a handshake to people coming into his room
The big brother gets to share today's update, and we have some great news indeed. Today was busy; speech therapy, occupational/physical therapy, and his therapuetic recreation included a visit from Rommel, a massive Rottweiler therapy dog! Forrest was very interested in him and with some assistance, Forrest gave him treats, threw a ball, and scratched him all over. During the visit Forrest gave Rommel a small smile, as you'll see in the picture below. Forrest may have saved his first smile for Rommel, but he gave his first grin to me and "Mum," as Forrest calls Mom. After the therapy dog session Forrest broke into a large grin and kept it going as we all smiled excitedly back at him. We were too caught up in the moment to get it on the camera so you'll have to wait till next time.
He also followed commands much better today. He gave a small affirmative nod when asked if his name was Forrest. He also put one finger up when asked. After he grinned I asked him to give me a thumbs up which he did and then followed it with a fist bump. He's coming back slowly but surely!
His lungs are doing better than yesterday, but he still has a lot of mucous he is fighting. We're waiting for the antibiotics to take effect. No fever. His pain meds were decreased today, which is allowing him to be more awake during his sessions but is also making him more agitated when he is bored in bed. He's learned how to change the channel, so he flips between cartoons and basketball, things he didn't watch much before... maybe he's developing new cinematic tastes. We were flipping through channels today when the epic Rocky running scene came on, which immediately caught his attention. He'll be making a Rocky comeback in no time.
Two good days in a row. Sounds like a trend in the making. The therapists at Shepherd are incredible. They are so positive, talented, upbeat and…. well yes CUTE! This morning, one of Forrest's Physical Therapists had him sitting propped up on a large padded platform while her assistant supported his back. He had his long legs draped over the side with his feet on the floor. The therapist was determined to get him to lift his knee and pick his foot up off the floor. You have to understand, he could barely hold his head up. She persistently kept tap tapping on his right knee, " Pick this knee up Forrest. Come on Forrest. You can do it. You do it Forrest. " tap tap on his knee…". You can do it. Forrest. Pick your knee up NOW." Forrest just can't make the knee behave. So what does he do? Without lifting his head, he slowly slides the fingers of both hands under his right knee and lifts that knee right up! Austin and I can't help laughing. The therapist laughed too and then chided him. "Forrest, that's cheating!" Austin and I just looked at each other and smiled. We knew it was classic Forrest. He will find his own way to get the job done, but he WILL get it done.
Quote of the day: "Fall down seven times…Get up eight." Japanese proverb
It was indeed a brighter day today. Although his chest x-rays and blood work confirmed our concerns about pneumonia and identified septicemia (bacteria in his blood), at least now we know that is contributing to his fevers. Today he was started on 3 powerful intravenous antibiotics. His fevers have broken and his coughing subsided.
His tracheostomy was changed this morning to one that can be temporarily plugged allowing him to breathe for the first time through his nose and begin to work on speech therapy. He successfully spent several hours in his chair without complications. His occupational and physical therapists were able to take him out of his room and into the gymnasium. There he spent several hours working on cognitive abilities. He made great strides during his first real day of therapy.
Since he is just awakening from a coma, he has to start with very basic forms of communication and work his way up. He was able to identify and begin matching shapes. He was also able to distinguish between and choose certain objects when asked, including telling apart forks from deodorant, soap from golf balls, and red from blue. This is the first step in re-learning communication, language, and cognitive functions. He's working so hard and has come a long way since he first started to emerge from his coma less than two weeks ago. He will continue to have periods of wakefulness and awareness, but his wakeful periods are dramatically better than last week. You can clearly see him reaching out to his therapists, trying hard to get it right, and the frustration on his face when he struggles with the questions he is being asked. Just holding his head upright is still a challenge and he tired quickly from the effort. Its late now and he is sleeping soundly.
It was a difficult day for Kent, having to say goodbye to Forrest for awhile. He had to fly back to his clinic today to support VEI and his staff who have done so much to help in his absence. Fortunately, Austin is recovered from his sore throat and is back in the mix, attending therapy today and sitting with Forrest tonight.
The most encouraging news of the day came from Doctor Darryl Kaelin, Medical Director of Shepherd's Acquired Brain Injuries Program (ABI). Dr. Kaelin (his father was a jockey, raced at Churchill Downs and then trained thoroughbreds and saddlebreds in KY) spent a lot of time with Forrest and us today, and said he's pleased with Forrest's progress so far and expects him to do well.
Quote of the Day: "People are always blaming circumstances for what they are. I don't believe in circumstances. The people who get on in this world are the people who get up and look for the circumstances they want, and, if they can't find them, make them."