Getting out & about. 3/28/13

It is spring break, Forrest, and there is no home bound school for you this week. You have worked so hard at your lessons in US government all year. When you began this course, you had not found your voice yet and your hands were frequently clinched into fists unable to use the keyboard. At that time your main communication was through a gaze activated computer. Now you are reading, talking and keyboarding with both hands! One of our visions for your future is for you to return to the classroom in the fall to finish your high school degree and then to go on to college. In order to safely travel you have to overcome the vertigo and carsickness that has plagued you for the last two years. You and your team have taken up this challenge with a vengeance! As you've grown in strength and the ability to communicate with us we have continued to add a series of exercises to your daily therapy to improve your balance and to help you overcome the vertigo. Now we are beginning to test your progress and increase your endurance. You began with short trips in the car and gradually we are increasing the time and distance you travel. Always you have two aides, including your excellent Medical Team nurse, at your side along with suction and other equipment to ensure your safety. Last weekend you were able to make it to a neighboring farm to see the horses and hounds come in from the hunt. It was a day blessed with sunshine, beautiful horses, familiar faces and time to celebrate your progress. It warmed our hearts to see your smile and your pleasure in being with trusted friends out in the Virginia countryside again. We all share your determination and are eagerly anticipating your growing freedom, mobility, and joy this summer! With love & gratitude , Mum

A Day in the Life...

Hey Forrest.  It is dark here in the ManCave as you have settled in to take an afternoon nap.  I just peeked around the corner and your eyes were drooping closed.  You have had another busy day at "BrightWood Rehab" and are so deserving of a rest for your body to prepare for more therapy tonight.  I do not know if everyone is aware of what your busy days look like and how hard you work, so I thought I would share with all of your dedicated blog followers a bit of a "day in the life" of you - Super, Amazing, Rock-Star, Champion - Forrest Allen!

The active part of your day started today at 10am.  You got dressed with some help and got into your wheelchair to begin your morning routine of shaving, brushing your teeth..etc.  Although you are still not able shave your face on your own, you have recently begun doing your teeth brushing almost completely independently.  We stay right next to you during this as you are still at risk of aspiration, but you are determined to do as much on your own as you can.  I love watching for all of the new little things you can do - like squeezing the toothpaste onto the brush.  It takes you SO much concentration and effort, but you never want help!

We all loaded into the van and headed down to the stable around 11am.  It was a beautiful sunshiny morning, you needed to get your hands on a horse and we wanted some pictures of you and your horse Riley!  While Mum gave Riley a talk about behaving, Nurse Gayle and I safely wheeled you out of the van...and into the mud!  Your wheelchair was stuck!  Always ready for a change of plans, we quickly adapted and got you standing and Pops and Gayle helped you walk to where you would take pictures with horse Riley.  (Some of the pictures are included below)  Riley was a bit excited this morning, so we had to work hard to keep you safe.  You are only now beginning to stand steadily on your own for short periods of time, so we had multiple spotters right by you and had Riley under extra supervision!  After our adventurous, yet successful "photo shoot", we headed back up to the house because you had school!

Your Homebound instruction teacher, Sharon, arrived at 12:30 and you spent the next hour and fifteen minutes learning more about the Executive Branch of the US Government.  You always stay focused and interact with Sharon and I enjoy hearing the conversations the two of you have about the class topics.

After school, you had a little bit of time before your next scheduled therapy, so we used the time to catch up on the speech and swallowing exercises you had missed this morning.  You had 6 bites of thickened juice today and showed us some strong swallows.  You had a few coughs during swallowing, which had us on our toes - ready to help you if you were not able to clear your throat on your own.  I often wonder if you get sick of us hovering around you whenever you have the hiccups, cough or sneeze. Throughout your recovery, those have been strong pre-indicators of throwing up, so we are by your side at any of these signs. Someday maybe you will run around telling us all to "take deep breaths" whenever we hiccup!

After some reading and other activities, 3:00pm rolled around and with it, your Music Therapist Tom Sweitzer.  You spent an hour with Tom, making up new songs, doing breathing exercises (using a harmonica) singing and working on strengthening your voice.  At one point, you were talking about surfing and writing a song about it with Tom.  He misheard you and thought you said an "89-foot wave" when you actually said "A 9-foot wave".  This, of course, led to some laughs and the creation of a very interactive story about an 89-foot wave and a surfing adventure.  You try so hard to be clear in your voice and it must be frustrating when you are misheard or misunderstood.  It is great how patient you are with us when we miss something.

That leads us up to where we are now...rest time.  This is so important for you, Forrest.  Your body continues to need rest and your brain needs some quiet time.  Tonight you have Physical Therapy with Del, more swallowing, memory exercises, a shower and your nighttime routine, so your busy day is not done yet.  Most of your days are full like this, often with back to back therapies and few rest periods.  You are a champ and always keep going, even when the exhaustion is clear on your face.

This entry has turned out to be quite long, Forrest, but I just want to share one more thing with your blog readers.  Earlier this morning, you and your Mum were talking about your perseverance and attitude.  Mum hurt her back on her trip back from Malaysia and is quite uncomfortable today.  She asked you how you keep your wonderful attitude despite everything you have gone through and you told her:

"Just think about the things that make you happy"
and then later today, you told her: "Fake it until you make it"

Forrest, you have such a brightness about you and a great attitude, and now we know what it is that you do in that courageous heart of yours to keep on going everyday.  Thank you for sharing your wisdom with us and always brightening our days.  When we have rough days, we think of you - YOU are what makes US happy.

- Tami (aka "Coach")

"Howdy Ma'am"

 

Weekend Pictures

Happy Monday from BrightWood Rehab!  Here are a few pictures from Forrest's weekend.

Cousin Lisa, Lee and Baby Brooks visited on Saturday

Celebrating St. Patrick's Day with Aunt Lynn before she left for the airport

Therapeutic Pool time with Lee, Pops, Alpha and Stephen

Guest Writer

It’s Aunt Lynn writing today.  It has been three months since I was here with Forrest and all I can say is….well, wow!  What fun it has been to see him show me all of the progress he has made.  Yes, it is still very hard work for him but he has amazed me with walking up and down the stairs with only two spotters and so fast too!!  And he talks to me and tells me funny stuff and it is so great to hear his voice!  We are reading a funny book together with an ornery boy as one of the characters and, of course, he loves to laugh at that too.  The games I brought along are new to him and he is catching on to those quite well.  In fact, last night we sat by the roaring fire and played games and it just felt really nice.  Today I got to help as he practiced eating some applesauce.  Amazing!  It takes concentration to do all those swallows and he does just a few bites but of course, in Forrest style, he works hard at it.  He sometimes gets to do his swallowing exercises with a little of his favorite - Red Bull - mixed with thickener until it is applesauce consistency.  I told him I had never tried Red Bull and it was decided that we should try it together. He was pleased when I told him I liked it!  We took a picture to record the moment of course!  And we laughed.  It is so great to get to celebrate some milestones of progress with him.  His hard work and the wonderful efforts of all the caretakers is a joy to experience.  So what can happen in another three months??  When it is Forrest who knows…but it sure is worth celebrating!  You are The Champ Forrest!

Aunt Lynn's first taste of Red Bull!

Update and Pictures of the Week

    Forrest continues to work hard to regain his strength and endurance from his recent surgery.  The incisions and graft sites are healing well, but are very closely monitored by Rae, Kent, the nurses from the Medical Team and his doctors.  Forrest is still wearing his sporty turban to protect the vulnerable areas on his scalp and is also getting antibiotics through his PICC line in his upper arm. 

Forrest still has moments where it seems like everything on his body hurts.  His voice comes out very clearly to communicate “ouch!” and his frustration is evident on his face as he works through the pain and works to form a sentence to communicate what is wrong.  It is difficult to see him so uncomfortable, but what a blessing it is that he is able to communicate it to us!  His nurses do an amazing job handling all of Forrest’s medical needs and his increased sensitivity to things like his stomach tube, graft sites and PICC line and they never waver in their diligent care, even when he is struggling to be comfortable.    

    We have continued to fill Forrest’s days with school, physical therapy, music therapy, memory exercises, speech therapy and occupational therapy and he is at pre-surgery levels of functioning.  These challenging therapies are all so important to his every day fight to grow stronger and he is so blessed to have all the amazing people on his team that work with him on the good days and the bad!  His voice is getting stronger every day, but he struggles with clarity and volume. With great effort, however, he can muster enough breath and force to yell a word across the room.  His words and thoughts often get jumbled and he continues to have issues with his short term memory and word selection.  He has great recollection of events from before his accident, but has to work really hard to remember things such as the current month, names and what he did during the day.  We do a lot of repetition and memory exercises to work on strengthening this area of functioning. 

    Physically, Forrest works hard every day to increase his strength and endurance.  His shoulders are tight, so reaching above his head takes a lot of effort as he fights to keep himself upright.  His balance is an important area we focus on and although he is beginning to stand and take small steps on his own, he is still quite “wobbly” when standing, so he requires a walker or people to help keep him steady and safe.

    Certainly Forrest's sense of humor remains and he enjoys joking with his Team.  Slow, steady progress and improvement following his latest surgery is the key!

    Earlier this week, Forrest ventured out into the snow with Tami, Gayle and Dad during the big March snow storm.  Snowball fights and a Team Forrest Snowman were the order of the day and Forrest enjoyed himself.  

    We will keep the faith with Forrest and keep assisting him in his struggle to return to himself.  Thanks for your support and prayers!

YouTube link of Forrest outside in the snow:  http://youtu.be/yVcch7Kv85Q

Sharing a moment before Mum left for a business trip

Forrest wrote this in his daily journal

Forrest and Pops standing tall with the Team 44 Snowman

Snowball fight!