Wednesday, May 30, 2012

Update: 5/30/2012

The week has been busy with lots of therapy and work. Visits from his friends, which we hope will continue, break up the hard work of healing.

His movements with his hands and arms have continued to progress and he makes them on a more regular basis than we have seen in the last six months.  We have seen just the beginning of movement from his feet and legs but that is still very early.  Certainly none of this is easy for him and it's an effort every time. You can tell how hard he thinks and struggles with each baby step gained. He has started doing fist bumps with his friends and nurses. While that seems like a small step, it is a significant one.  He continues to respond to smiles and funny stories on videos as well.  For his friends if you can't make it by to visit then please send him a video which he enjoys greatly and we play on a regular basis. We also appreciate the emails which we continue to read to him.
We focus on trying to fill his day with music therapy, speech therapy, physical therapy and the occupational therapy, and interesting movies and books, that we all provide him every day.  He works hard at these as you saw the last picture.  We continue to help him with his swallowing and speech which are very important to him.. His emesis episodes continue sporatically which are dangerous because of his risk of airway obstruction and pneumonia.
So nothing comes easy but he continues to make a little progress on a daily basis.
His compassionate and skilled nurses continue to help 24/7 round-the-clock and we could not do it without them. They protect him at night and during the day to make sure his medication is correct and his airway is not in jeopardy.  Team 44 continues to find better ways to take care of him and to keep him moving and healthy.  His friends help keep him inspired from those moments we all go through when we're too tired, too sore, and too depressed to go on.  Thanks for all your support and keeping track of Forrest. We appreciate comments on the blog they help all of us keep going on.  We try to keep the blog updated  as much as possible but it gets busy here as you can appreciate. We do thank you all for watching over and caring for Forrest and helping support the entire Team 44.

Thanks, Dad and Team 44.


PS:  Forrest has just encountered yet another rough spot in the road.  We are hoping it was just a stomach bug.   With Dr. Falkenstein's wonderful support and visits from Tom Sweitzer, Clancy, Alex, Peyton, Mike, Nate, Nick & Whitney,  he is already feeling better.   He is still on IV fluids, but is keeping his medication down now and hasn't had a fever in over 24 hrs.    We are so hoping to avoid returning to the hospital if we can safely care for him at home. He is stonger now than he has been in months.  Not so long ago a little infection could be life threatening.  Now we are hoping and praying, that he will bounce back with his characteristic good cheer in a couple of days.  Brief visits from his friends are the key to keeping his spirits up and his sights on the future,  that together we can help him create.  

 With love and gratitiude,  Mum


Somedays you just have to get through...
Friends make everything better!

Monday, May 21, 2012

Update: 5/21/12

Forrest has had a great week & weekend, he continues to make progress with his hands and now with his legs as well! Below is a photo & video of him working hard helping with squats during a physical therapy session with Del.

Picture
Video
video

Tuesday, May 15, 2012

Update: Tuesday, 5/14/12


Home is a special place. Everyone enjoys being home among family and friends, and Forrest is no different. He has had a terrific week home at Brightwood. He's started to regain control of his hands, in ever so difficult, tiring, small, inconsistent steps. But nevertheless he is giving it his all, and it looks like this time it might be a steady trend. Just this week he's given his first thumb-war, peace sign, and definitive thumbs up, in 7 months! He can consistently give me our "secret handshake"(which of course I can't disclose to you) when I ask him. He's giving hugs (he usually saves them for his friends). Though nothing is consistent yet and every movement is a shaky, exhaustive effort, him gaining control of his hands opens up all kinds of doors. He can now start to communicate with his hands, and we will work-in novel games like swords, light sabers, and nerf guns, to encourage him to gain stronger use of his hands and arms. Since his shunt has been dialed down as Dad explained in the last post, we've seen a world of difference in his expression, strength and now recently, in his hands. Every day is a battle, but we are excited about what is to come and the possibilities that are opening up before him as he learns how to interact with the world around him again. 

Great food, intensive therapy, overwhelming support, visits from steady friends and loving family, have all contributed to his improvement. Not the least of those resources in his arsenal is Super Mom. I know I'm a couple days past mothers day, but we were busy having a great day and hey, better late than never. Everyone says they have the best mother, but after watching her lead Team 44 for a day, it'd be a tough call. I try to keep up with her and pick one thing a day to research for improving Forrest's rehab, but here Mom every day is helping to direct his medical care plan, developing his therapy team, cheering him up, changing the bed, working out nursing care schedules, oh and making sure we have enough yogurt for his twice daily home made smoothie. It's all just a regular day for super mom. But ironically, it's not all the balls in the air she juggles that is the amazing part. No, the incredible, awe-inspiring part is how she can come down the stairs into his man-cave and no matter what is going on in the day, she can take a deep breath, get down close to Forrest in his bed, look into his eyes, and project an aura of confidence and belief in him so sincere anyone listening is instantly reassured. Forrest meets her gaze as she tells him how hard he's working and what a champ he is, with a look of, "I know Mom, you don't have to tell me this every day... But I'm really glad you do."

Happy belated Mother's Day, give a hug to all those amazing mothers out there, God knows they've earned it. 

Love,
Austin

Forrest standing tall on Mother's Day.


Forrest helps Mom unwrap a Mother's Day gift.

Forrest 'bops' Grandma Norma on the head while Aunt Lynn supervises. 

Forrest gives Tori a big hug.


Liza visits and shares joyous Mercersberg memories with Forrest.

Monday, May 7, 2012

Update: Monday, 5/7/12


     Forrest has made it home!
     6 weeks after his third and last cranioplasty (putting the lid back on), we got the ok to return to Brightwood.  The weeks in between have been taken up with recovering from surgery and healing the incision.  There have been multiple “dial downs” of the shunt.  That means the shunt that transfers excess cerebrospinal fluid via a pressure sensor down to his abdomen to be absorbed.  The dial down technique uses a magnetic control that lowers the shunt pressure operated opening and then is checked by an x-ray.  A couple days later the size of the brain ventricles are evaluated by a CAT scan which is essentially a 3 dimensional  x-ray.  This checks if there is a change in the size of the ventricles.  A slight decrease in the size of the ventricles is desired.
     While all this has been going on Forrest has been participating in various therapies at NRH and now at Brightwood.  He has been working hard at it and in the last week or two (after the second and third shunt dial down) has made more progress.  He is able to make occasional purposeful movements with his arms and hands.  While it is still a struggle and he has to work hard at it he has made more progress this week than he has made in the last 6 months.  This reinforces the theory that part of his issue has been the equalization of pressures and the negative effect atmospheric pressure has had on his brain.
     The rest of Team 44 has been busy too. Rae, SuperMom, holds everybody else together, scheduling therapy, nursing and checking medications as well as working long hours each day with Forrest.  Rae is working on a new Dolphin Quest project.  She’ll be able to ride more now that Forrest is home, as it is definitely her therapy.  She was able to do a quick trip (can you do that to the far side of the world) to work on  the new project.  Austin continues to be caretaker and physical therapy worker extraordinaire and working on the still under construction Sea Lion exhibit at the National Zoo.  It is making progress and will be open sometime this summer. In his spare time he works on the large freshwater aquarium in the basement and is building a new saltwater one there as well.  He will take a well deserved break in a couple of weeks and go to Cancun for R and R with a couple of buddies for a long weekend soon.  Kent was able to get away to Europe recently doing the World Cup Event with the rest of the Olympic Veterinary Commission in preparation for the London Olympics; he will do the job of the Veterinary Technical Delegate or Veterinary Judge.  He then came home worked a couple days and went to the Rolex 3 Day Event where he worked his 15th year as treating vet with Dr. Johns.  In his spare time he has given four lectures to Veterinarians this spring and with his staff published two scientific papers to go in the veterinary literature and he and his group run the busiest second opinion lameness practice on the east coast.
     Forrest’s transport home was uneventful but we are very careful because he frequently gets car sick and is at risk of aspiration pneumonia.  Chad an EMT and LPN and one of his primary caregivers at home and nights at NRH was there as well as Austin and Mom in the back with Dad driving. After spending 12 of the last 15 months in hospitals, Forrest  seems relieved to finally be at home.  Sunday with a lot of encouragement, he was able to raise his hand yesterday while on the tilt table and make a basket.  We also went to the stables and he fed carrots to some of the horses.  We are keeping a close eye on him and his progress and are reassembling his rehab team and hopefully will continue to make steady progress.  His friends are an important part of that progress and we encourage you to visit him as your time and schedule permits.  If not then video messages are something he watches on a regular basis often during therapy and they always bring the biggest smiles.
     It is hard sometimes to think about where we were two years ago on this weekend.  We were all four at Gold Cup, laughing, both boys having great fun with friends.  There are great times ahead of us and it does no good to look backwards other than the lesson that we should all hold on to these moments with our family as they pass too quickly.
     -Dad and Team 44

Home at last!

Treat time with TJ.

Finn, our horse therapist!

Sarah, Corina, and Forrest make a slam dunk!