Update: 11:00pm on 9/5

Forrest has been making slow but steady forward progress in the last few days. He was two weeks out from his cranioplasty. Dr. Armonda stopped by on Friday to take out almost 50 staples. Dr. A asked for a fist bump afterwards but since removing staples hurts, it’s probably lucky Forrest didn’t feel up to gesturing. The next day Dr. A stopped by unannounced to get his fist bump and Forrest immediately stuck his arm up and gave him a fist bump. It was a great moment and Forrest was strong enough to hold it for Dad to get a picture. Dr. A was excited with the progress as was all of Team 44. Another notable happening, was a hug given to Austin from Forrest tonite after a long grueling day of therapy and three and ½ hours up in his wheelchair.

So it is still a long painful road back for Forrest. He daily struggles through more pain and frustration in a week than most of us will experience in our lives. But to be able to move his hands and arms again, even slowly and infrequently, is a major forward move after two to three months of decline. Forrest and I talked this weekend (he can communicate with blinks and hopefully his iPad soon) and I reminded him that if he can do one small new thing everyday it will be huge in the long run. He is trying so hard. His increased muscle tone makes it very hard for him for to use his hands and arms and legs. The Doctors at NRH are talking about doing some procedures to try to relax the extreme muscle tone and posturing. There will be some pain involved in the procedures and will require a general anesthesia but hopefully it will allow him to progress with his mobility in his rehabilation.

Aunt Lobie visited for a week and helped recharge and refresh Rae as well as visit and support Forrest. Big brother Austin has been busy starting a new job, being a major advocate for Forrest as well as downloading movies to entertain him. He enjoys movies and humor and I have included a picture of he and I sharing a chuckle on watching “Saving Silverman”. Rae as ever is tireless in talking to the Doc’s, checking and rechecking the dozens of medications and treatments he is receiving and monitoring his calories since he is still having to be fed and receive water via a peri-epigastric tube (PEG). He is making progress on his swallowing thick fluids and had a very good session today on swallowing applesauce. Realistically it will be a while before he can swallow enough food and water to support himself and not be at major risk for aspiration and pneumonia, which is a daily concern.

So life goes on slowly and painfully but each little victory is a major celebration for Team 44. Forrest continues to struggle and is coming back again. If he can swallow, move hands and chuckle in the midst of everything happening to him, then anything is possible! What can we do but provide every level of support we can.

Proud to be a continuing member of Team 44,
Dad

Nick encouraging Forrest during PT.

Dr. Armonda getting fist bump.

Mom, Forrest, and Aunt Lobie.

Forrest smiling while watching a movie.