I can’t believe my last post was in May of 2019! So much to talk about, so much good news but in a sad twist my last post had the same title. Jo is back at childrens...last time it was a rash that turned into a serious infection, not surprisingly Jo rebounded in a few days. Here we are again.
Over the past few days Jo has been uncomfortable and unable to really rest. Jo sometimes struggles at bedtime but mom and dad knew something was wrong. Issues culminated Tuesday when Jo was inconsolable most of the day and peaking at about midnight. Mom made the trek to children's ER on full social distance orders!
Jo was admitted early Wednesday morning after a full night of no sleep for Mom or Jo. Good news is no virus, no infections, no gall or kidney stones, and no obvious issues with his internal pump. Bad news, what the heck is wrong? The ultra sound revealed a Jo was impacted in his bowels. Large enough to be obvious on the picture he is backed up bad. The hope is that is the cause for his pain, we can't be 100% sure but at least we know other more serious issues are not the problem. The plan is admission, full blast with IV fluids, treat the constipation and hope Jo is relieved of his pain. I will keep everyone posted, he has been able to sleep on and off throughout the day and night but still waiting on some serious movement! It can be very complicated when Jo is struggling with even a common cold. When he feels discomfort his brain fires more than usual and it causes involuntary toning” in his arms and legs. The worse the pain the worse the spasm magnifying the issue. He has had some ridiculously long episodic moments of pain where he screams for a few minutes. It is hard to believe that something this simple could cause this much pain but it is possible in Jo’s condition. Please keep positive thoughts, he has tied together 2 hours of sleep here and there but is completely exhausted and still uncomfortable most of the day.. Thanks for the positive thoughts and prayers!
Let's run through a few quick updates:
Not taking anything away from the millions of people struggling with COVID around the world the school closure hits our family particularly hard. His brother Jimmy remains the biggest challenge we face each day. He needs to school to maintain his normal schedule and without the individual attention he receives at school his behaviors can be magnified. It is impossible to explain the pure desperation we feel at times dealing with the his Autistic brain. Why does every cabinet have to be closed? Why does a dog bark send you into a frenzy? Why can’t you sit down for longer than 10 minutes? Why must you eat everything? Why must you eat like it’s your last meal? Jimmy is 18, 6’ 3” and 200#, if he wants something or doesn’t understand why the answer is no it can be a dangerous situation. Thankfully he typical directs aggression at Dad in the form of tackling, not hitting or worse. But if Dad isn’t around Mom could be in the crosshairs, hence the challenges of 6 weeks at home. Mom and Dad have never had a choice but to divide and conquer and that’s never been more true than now. It takes a toll...
As our daughters grow up their complaints about our life sting to the core. “We can never do anything together”. “We will never be normal” “Jimmy ruins everything” When will we ever do things as a family” “When will Jimmy ever change” a few times when Jimmy was aggressive he knocked me off my feet in front of Mady, her tears were more painful than any physical pain I could have endured. It seems “it is what is” is our family motto never more so than now. Here I sit bedside with Jo so the girls can have some time with Mom. I can’t help but worry that Jimmy is behaving or at least self managing his agitation. Mom afraid to call me and wake up Jo here, me afraid to call her and interrupt what may be a brief moment of peace.
Ok some positive stuff...Jo stood on his own feet a week ago! No assistive device just his loving nurse, his new amazing PT, and I to make sure he didn’t fall. There wasn’t a dry eye in the house. Jo supported his own weight for almost 10 minutes! He was so proud of himself, and exhausted! For those that know our story add this to the list of assessments that said it would never happen. Amazing doesn’t cover it.
We greatly appreciate the support from our friends and family. We know each of you are likely struggling during these scary and uncertain times. It means a lot to think about us. We’ve always said we were not strong by choice but by circumstance, we will never give up, and Jo will beat these challenges one by one until he is back to our crazy athletic boy. We have many things that give us reason to be sad but just as many that lift us up. We can’t thank you all enough for your support, if you want to smile, and have some free time, have a look and follow Jo’s YouTube channel. The link is on the home page, he is a funny dude, and the cameos by his baby sisters are pretty amazing.
Jojobinks you are the most amazing kid in the world. Even when you are struggling with pain you muster a smile, somehow. I often gaze into your eyes and wonder what you could be thinking. How have you managed to keep pushing? You are an inspiration to many, and the absolute embodiment of love to our family. We know you will never give up the fight, and we will never stop fighting with you. We love you to the moon and back angel eyes, YOU’VE GT THIS