2 weeks, so far so good

Sorry for the delayed posting we have had yet another very busy week.  Jo has had another appointment and aside from the 40 minute ride to the doctor everything went well.  It was his first G-tube change so mom and dad were stressed, it was literally a 3 second process and Dr. Escobar was a very calming influence on how simple the procedure is.  In general he is calm and very personable, a great guy to have taking care of your son.

Following that appointment Tuesday Jo has been the calmest Alex and I can recall.  It is a little nerve racking to be honest.  His vitals are strong, he is super stable and comfortable.  It's like he has finally hit his groove at home and is able to rest knowing he is safe and secure.  Healing is definitely in progress, please God please.

Jo is moving more than when recall.  Anytime he moves it is exciting to us, but particularly when we see "intentional movement". For example if he raise his arm towards his trach it can be perceived as "intentional" in terms of his awareness of it and purposeful when reaching for the area that is bothering him.  Nervous system reactions are also very exciting.  More than once we have dropped something on the floor that caused a loud sudden "bang".  Jo flinches, that is a great sign!  A few days ago Mom was adjusting something near Jo's face and her metal bracelet tickled Jo's nose, he immediately jumped!  All good signs that Jo's healing continues, he is fighting his way back to us!

Another very exciting development has been Jo's attentiveness in bed.  At times he does stare into the ceiling with a blank stare but far more often he makes direct eye contact and follows whoever is talking to him.  He recognizes when new people enter the room or come next to his bed, and it is breathtaking when he stares into your eyes.  Jo is definitely trying to show that he is in there fighting, and when you look into his eyes it is both amazing and painful to know that he is battling so hard.  It is also very comforting to see the "normalness" of Jo when he is resting and obviously awake.  Jo sleeps through the night, and is active and naps during the day, that is the kind of normal we love to see.

Jo's recent stability indicates he is very comfortable at home.  Mom and Dad are still doing 100% of the care minus to 12 hour shifts covered by his amazing nurse Sergei.  We are close to getting additional nurses to help but our insurance is definitely stalling.  We have conducted 5 interviews and felt everyone was a good fit for Jo yet we don't have final approval for their agencies to begin staffing.  It is deeply frustrating to think we could have Jo with 3-4x  more support if we could just get papers pushed.  Mom and dad have always looked at the "healthcare crisis" from a insider perspective because of care for our son Jimmy.  Jo's experience thus far just further illustrates just how broken and callous our system can be.  The professionals who can provide the best care in the world hamstrung by an impassable bureaucracy.  We know we are blessed to have the coverage and support we currently have, we hate to complain.

Jo has had many visitors the past week.  Being at home makes access easy and we have loved to see friends and family spend time with Jo.  One amazing visitor was his dentist!  She did a full cleaning for Jo, it was an amazing blessing and we cannot thank her enough.  Jo even cooperated by opening his mouth and allowing her to work! Jo is so loved!

Mom and dad have also had many more visitors than we can ever recall and we truly love the company.  Having friends and family here at our home recharges our batteries and allows us to stay positive, we are blessed.  Thank you to everyone who has taken the time to stop by, call, or give us a hug, it has meant so much.  Jo's journey continues and we will need that for a long time to come!

Jojobinks you are making great progress and healing everyday!  You're friends and family are close and loving seeing you.  We have everything you need here at home.  More angels appear everyday to help us on this journey with you.  You keep resting and healing with the Lord and we will patiently wait for you here.  We love you to the moon and back sweet angel, You've got this.