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Jan 5, 2012

TJ and SIS..14 weeks in

FYI Update
2-10-202 TJ has "Post concussive syndrome" not SIS, Im not changing the post

Yesterday marked 14 weeks since TJ suffered 2 helmet to helmet hits in football. He has been suffering from SIS or Second Impact Syndrome

Often SIS is fatal, 50% mortality rate...I've since found out. I guess we should consider TJ extremely lucky. I am also so thankful for all the top notch medical professionals that treated and continue to treat TJ.  Marionjoy Rehab Hospital  has been a Godsend , they see and treat the worst of the worst.
Monday at physical therapy TJ took the gaze stabilization test and scored above average..YAY! The PT has tried to give this test to TJ a few times in the last 2 months, each time he couldn't even see anything on the screen and the test had to be stopped. The PT said TJ did so well (avg is 70, TJ scored 120) that he saw things flashing by that she couldn't even see.  Ann (PT) had TJ run the hallways to purposely aggravate his brain...which it did. His headache went from a 2 on the 1-10 scale to a 7 which is horrible...the positive is that TJ didn't get dizzy! Another good sign was that Ann immediately put TJ in a dark quiet room and his headache went straight to a 4.
Yesterday (wed) TJ woke up on his own at 7am (he'll sleep til noon, 1 or 2 pm if left alone)
He was different Wednesday, he seemed better than he has been. Dr Walsh the Brain Injury Coordinator at Marionjoy said  "one day he'll wake up and it will be like someone flipped a switch"

This is where we are:
 TJ is to aggravate his brain daily and then let it recover in a dark room otherwise he will not tolerate school at all. He has therapy Mon and Wed, then hopefully he will be discharged.  On Wed. Dr Walsh will administer the repeat
IMPACT Test. Original test was given to all football players at the beginning of the season to establish a baseline of brain function. The HS sent over the code so when TJ takes the repeat on Wed at Marionjoy it will compare to the one taken at the high school...online test. If TJ passes he will be cleared to "TRY" school on January 16, if he fails the test, more involved brain testing will be given.  If TJ finds he can't tolerate school he will be evaluated at Marionjoy and have the other brain tests...I have no idea what they are.

Yesterday I took the 3 boys to our health club Glass Courts which is an amazing family friendly club. We all ran the indoor track..I did a slow jog as not to aggravate my neck that has been feeling pretty good. TJ felt great, so we put Karrick in the nursery and then hit the weight room (machines, not free weights)  again TJ felt great. TJ and Cal went to play racketball and Karrick and I went swimming. TJ lasted 20 min on the loud, bright and echoing court. POW a mean mean headache hit, so bad that TJ got pretty angry. It did calm down some once we left. In the past 3 months when that level of headache hit, TJ would be crippled with pain for 3 days and almost seemed drugged.

All in all, it would appear that TJ is finally in the recovery stage.
No one can tell us how long some of the symptoms will last. I image that the headaches will linger for a long time. 
TJ still seems to get confused and can be a little slow to comprehend things. He sometimes forgets things, but not like the short term memory loss the 1st 2 months where entire conversations were lost
Maybe once he's back at school his brain will liven up some, he's had virtuously no brain stimulation in 14 weeks so maybe it's hibernating a little.

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