ALL GOOD THINGS...

I can't apologize enough for not keeping everyone updated.  So much has happened, I'm happy to report ALL GOOD THINGS.  Since my last post Jo continues to amaze us and his rehab team without exception.  He's made the impossible possible, he never gives up, the road back to his old self is long but every day he seems to take yet another tiny step forward.

• Jo completed his swallow test at Seattle Childrens.  Basically the test was to ensure the brain is telling the airway to send fluid and food to the right pipe.  Jo did great, we were blessed to have his speech therapist, and pretty much his best friend Sheri, with us for the trial.   Once we knew that Jo was at a low risk for aspiration it was game on with food!  French fries, yogurt, soda, cheetos, clam chowder, it is amazing.  Just like physical therapy you start slow and build, he loves tasting the foods he's missed for so long!  With progress, and Jo's iron will , someday soon, the G tube could be gone, PLEASE GOD PLEASE
• Jo completed tendon lengthening surgery on both legs to correct foot drop he developed over the last year,  In order to stand and participate in therapy it had to be done.  Well, mom and dad said it had to be done, the docs were a skeptical about the need.  We knew it was important, and the docs always try to temper expectations, we are way past that.  We keep pushing and Jo keeps performing!  He has healed extremely well, his feet look great.  He can stand in the "stander" for as long as 40 minutes bearing his own weight!  It is so important to have his body to be upright, good for every organ, his bones, and his posture.  
• I mentioned Jo's guardian angel and best bud Sheri before but I can't say enough about her bond with Jo and the special connection they share.  Even more important is how that bond has given Jo the strength to come so far with communication.  Jo now makes purposeful sounds and can imitate tone and reflection.  He has yet to form words, but he is so close.  Not surprisingly , the most clear word he has spoke is Mom....shocking.   He has his computer to play games and communicate via eye gaze, and Sheri has tirelessly worked to make it personalized to Jo, including sarcasm!  It is so empowering for Jo to be able to communicate his needs, tell us how he is feeling,  and make decisions based on his wants and needs.  He is finding his voice again, and Sheri is the reason!
• Jo is also making progress with his mobility.  The most exciting development has been his "test" of a motorized wheelchair.  His rehab team got the ball rolling on  a loaner chair.  The moment Jo sat in it his instinct took over.  He drove out the door, up the driveway, and towards his buddy Ashton's house!  He was a natural at controlling the chair, and literally yelled and laughed with joy!  It is the first time in 18 months that Jo decided where he was going and when, it was a very emotional moment for our family, it must have been so empowering for Jo!   More to come...

All good things...

I'll spare the details on insurance coverage, the multitude of denials that keep rolling in, the futile arguments, and chose to focus on the positive. 

We are blessed to have an amazing caregiver 4 days a week, she loves and cares for Jo like her own, he loves her very much.  Outside of that it's just Mom and Dad, really mostly Mom, she is incredible.  Our insurance stopped providing coverage in January, the state has stepped in but it's been a real challenge to find anyone we can trust with Jo.

His rehab team is exceptional, they love Jo and he truly loves them.  the result is he pushes hard, never gives up, and is making outstanding progress.   They are always positive about the future, they don't let us or Jo off easy, they want progress and Jo delivers!

In addition to the amazing support we've received from all of our friends and family we have another exciting development.  The team at EZAccess  www.ezaccess.com/our-company heard our story from another friend and has jumped into action to make our home accessible.  We have two locations where a small ramp would make a world of difference for Jo in the backyard.  They even worked with home depot to coordinate a fence repair!  These are things we would love to do, have wanted to do, but just haven't had the means.  But as we have experienced over and over again, having faith, somehow, someway, miracles happen, THANK YOU!

Lastly it dawned on me recently that I haven't talked enough about the most exciting part of Jo's recovery.  Jo is 100% without a doubt "all in" on his recovery and extremely aware of everything around him.  His memory, sense of humor, recall, and emotional intelligence are off the charts!  He jokes, laughs, enjoys time with his friends, celebrates when he makes progress, and is absolutely, positively cognizant of everyone and everything going on around him.  He is grateful, humble, and strong, he is the reason we know with time our boy will be back.  Looking into his eyes seeing the range of emotions is indescribable.  He is fighting so hard, he is not close but also not far.   He is the example of why you never give up, the proof that only God knows what's next, and the strength we draw on each and every day.  He is perspective on our life, and should offer perspective on yours, life is not easy, it is not guaranteed, but with love and faith anything is possible.  

Jojobinks you are making your own story.  Only you and God know the future, but we know you and trust God.  You are surrounded by people who love you, supporting you each and every day.  You have come so far,  you are an inspiration.  Keep us positive with that amazing smile, we need it!  We love you to the moon and back sweet angel.  YOU'VE GOT THIS...

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