SUMMER RECAP

Hi Everyone!

It seems lately I always start these posts with an apology for not keeping everyone updated.  So once again, I am sorry for the lack of updates, but let's get caught up on where we are today.  Spoiler alert: Jo continues to slowly improve and while we haven't had any major improvements, Jo has never stepped back, he ALWAYS moves forward!

• Jo continues to receive PT, OT, and ST services multiple times a week.  We have transitioned from home visits to the clinic which actually is a good thing.  Jo has been excellent in the car!  Many of you will recall he suffered from severe car sickness for months after coming home.  Over the past 6 months Jo has been solid in the car with no issues.  We are very thankful for that as in home service coverage has expired and we MUST  go to clinic for services.
• Jo continues to makes sounds (vocalize) which are deliberate and appropriate to his needs.  He can yell when he needs something and will respond to requests to talk.  When asking yes or no questions Jo will make a sound to confirm what he needs.  He is trying his best to mimic sounds and has actually vocalized something very close to Mama (not surprising) and Bella.  It is obvious to us that he will restore his ability to talk if we remain patient.  His speech therapist is far more than his therapist and has become a dear friend to our family.  It is obvious she loves and cares for Jo as much us we do, as parents we could not ask for more.
• Jo has made some improvement in his ability to move his left side post the internal pump surgery.  He has an extremely strong grip and can move his arm from his side to his head.  This is very encouraging as we hadn't seen this since the pump was put in place.  In addition when he is in his wheelchair he can lift his left leg outward, fighting gravity, and hold it extended for a few moments.  Jo can now help mom and dad when transferring from the bed to his wheelchair with his ability to support his own weight (stand w/assistance).
• Jo has also made some progress with fine motor movements and can use a computer mouse with some reliability.  It is very slow and obviously exhausting to him but he can use the mouse combined with his communication computer to communicate with phrases.  It is not as efficient as we would like right now but he is making progress!  More importantly the communication computer works with eye gaze for interaction which can be extremely challenging and frustrating for Jo.  Mom and dad tried it out and staying focused is very difficult.  Jo was always a wiz on the computer so the mouse must feel great for Jo to regain some of his independence even if it's baby steps.
• One thing that has done nothing but improve is Jo's overall cognition. memory, and emotional presence.  Jo laughs often, he is sarcastic and loves to make fun of dad.  He remembers everything including friends and family he hasn't seen in years.  He regularly spends time with his high school buddies who have spent the night, played video games, and been typical teenage boys hanging out.  There is no better feeling as parents then to know your son is with friends, friends who have taken this tragedy in stride, and friends who care about Jo, it warms our heart.
• Jo spends hours a day with his sisters, watching youtube, talking about their days at school, laughing and listening to music.  They miss what once was, but they've shown an amazing resilience for the situation.  Mady spends a lot of time with Jo.  Many times my wife and I will hear her laughing and singing to Jo.  Jo had a special connection with Mady and still does today.  Seeing her makes him smile every time.  Bella lays with Jo and talks about school and their mutual friends, at times it almost seems completely normal and we can briefly forget all that has happened.

Mom and dad continue to be there for our children and find our own moments  to reflect on our crazy life.  It is incredibly easy to cry, feel desperate, and become inpatient.  Our kids keep us centered and remind us to stay positive.  Mom is a rock, she has never doubted Jo's full recovery, and it fuels me every day to stay present.  The tricky part is to stay in the now.  Don't look to far back, don't look to far forward, be present everyday for your family.  Provide the hope that they need to move forward.  Try not to let them see you cry, and never doubt that Jo is fighting his way back!

Jojobinks you are an amazing inspiration to so many!  Your will to push forward lifts us up.  Your smile reminds us that you are fighting your way back and you are still our happy fun loving son.  We know you miss the things you used to do, but also know with time each of them will return.  Continue to push yourself and know that Mom, Dad, and all of your family and friends are by your side on this journey.  We love you to the moon and back sweet angel, YOU'VE GOT THIS!