Jo is back at childrens
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
Jo is back at children's
This weekend Jo was sleeping a little more than usual and had a moderate temperature. Of course Mom noticed a slight discoloration in his left leg. It was red and a bit swollen, and it was warm to the touch. Mom immediately made the call to take him to emergency, although Jo insisted it wasn't hurting. As Mom's instinct is never wrong, shortly after arriving at Children's ER the swelling and rash spread more quickly. Jo was beginning to feel more uncomfortable as well. They took blood, ran cultures, and even did a biopsy to rule out anything serious. Ultimately it was concluded it was AT LEAST cellulitis and a severe case of it. As usual Children's was on their game and began antibiotics and called in numerous specialists to review Jo. It was a very stressful 24 hours as they monitored Jo every 15 minutes for any increase in the spreading and/or change in vital signs. Because Jo was now in pain his heart rate was elevated and he was clearly scared and uncomfortable. Jo was placed in PICU and under the best care we could ask for. The best case scenario would be the antibiotics take hold and fight back the infection. If the condition worsens surgery would be the only option to internally clean the area of infection, a very delicate and invasive procedure.
Update: Jo has responded well to the antibiotics, the infection has appeared to stop spreading it even appears less inflamed. As a result he was moved from ICU in to general admittance for further evaluation and to finish off his antibiotic dose. If things keep trending the same way Jo is on the road to recovery.
Mom is staying close to Jo and Dad is doing his best to keep eye on Jimmy and the girls. Fortunately the girls are spending a lot of time with their best buddies Lilly and Lucas, and doing their best to enjoy the summer.
We appreciate all the positive thoughts and prayers for Jo to come home soon, it's a very sad feeling to walk into his empty room...
Jojobinks once again you amaze us with your resiliency and strength. You always battle through and still keep smiling. This is just another bump in the road and you'll be home soon! We love you to the moon and back sweet angel...YOU'VE GOT THIS!!!
Hi everyone, I can't believe how longs it's been since my last update. For those I don't see on a regular basis let me start by JO IS DOING GREAT. He comes back to us more everyday and is working so hard on his recovery.
Through a pure miracle I happened upon meeting up with a workout buddy in my 5am Crossfit class. My "aussie mate" Phil and I push each other everyday, joke and laugh, and of course I shared my story of Jo, his recovery, and my motivation for getting fit. He also happens to work for an amazing company Aegis Living . He shared the story of how his company helps people every day and asked if he could help Jo and our family. In short, their founder gathers his top leaders annually and hosts an event where they break into teams and move forward with an idea to change peoples lives. The teams chose their "project" and friendly competition ensues. A "winner" is declared but as you can imagine anyone they help is the true winner. Phil and his team shared our story, talked to us about our needs, got to know Jo, and presented their plan to change our lives. Not only did they win the competition they definitely are changing our lives.
They reached out to a few Green Bay packers to tell them about Jo, his story, his courage and strength, and off course his love of the Packers! Check out the videos of our new favorite Packers! Jo, and the entire family and Aegis Living team were brought to tears as Jo watched the videos...he was ready to take on the world!!!
Packers lifting Jo up....
Isn't that amazing! We were so touched that they took the time to reach out to Jo, it makes him work harder on his recovery!
Some of you may know about the amazing story of the Share Family especially Carter and Lizzy . The team reached out to the family and told them Jo's story. They made a video just for Jo, and watched Jo's own youtube channel, Jo was over the moon!!!!!
These caring people are examples of Jo's vision when he started his Youtube channel... It was amazing to see this video and see that they cared enough to send Jo a personal message!
Last but not least, the core of the team's plan to help bring our family closer together, the most amazing thing we could ever imagine, they are installing an elevator! In time for summer, Jo will be able to go from his room upstairs via a fully enclosed, indoor, state certified elevator! Check out these designs...
Next steps are installation in May and more sharing with our family and friends!
We cannot thank the Aegis Living team more for all that they have done, and continue to do for us. We could not be more humbled that they chose to help us, and can't wait for Jo to have the access he so desires.
Also a special thanks to those who have donated to our fundraiser for Jo. He has started with a new Neurologist and she has given us so much more hope in his full recovery! We know it wont be easy, it won't be cheap, it will take time, but we believe in Jo and we know he is coming back. Everyone's support has been so amazing!!!! Please post Jo's story on all your social media and get his story out there! It is an testament to strength, courage, and faith. You can download and post the videos as well, tag everyone!
Jojobinks you are amazing in every way! We love you to the moon and back sweet angel YOU'VE GOT THIS!!!
Hope, faith, and love
Months have passed and I hope each of you and your families had a wonderful holiday season. I will admit that during the holidays it can be difficult not to get a little down. The intense focus on joy and happiness is always uplifting but it also calls for reflection and restoration in faith.
I’ve said many times before that in order for me to make it through the days and nights since this tragedy requires a unique focus on Jo’s life right now. Don’t look too far back, don’t look too far forward, as time goes on that gets extremely hard to do. We’ve always been a family that craves “normal”. With our son Jimmy and his extreme challenges with Autism it’s simply never been our reality. Before Jo’s accident we had moments of normalcy when Jimmy attended camp and we relished them. Eating at a restaurant , watching a movie , going to a beach or lake were exceptionally special to our family. Now those times seem so far away, and we are very far from “normal” most of the time.
I can’t begin I describe how much I miss what once was. I could never put into words how it feels to look back. How it feels to see old pictures or watch videos and hear his precious voice. My wife is so much stronger than me, her amazing faith in Jo gives her power to not only look and hear theses things but do it with joy. I don’t know how she does it.
Many of you know Jo was an amazing athlete at the time of the accident. He loved nothing more than being outside enjoying nature and goofing around with his friends. He had just finished his first year of tackle football, and I have a cell phone video of his first touchdown. Facebook reminds me every so often of this memory and I remember the pride I felt that day. My pride is renewed in Jo today as I watch him fight so hard to do the simplest tasks. Turning his head to glance at me, manipulating a computer mouse, open his mouth for food, or inhale deeply to make a loud yell. I can’t imagine his thoughts about how this all happened, and his frustration must be unbearable at times, but yet he pushes on.
For me the most challenging thing to do is anything physical with Jo. Moving him from chair to bed, adjusting his sleeping position, or correcting his posture in his chair often takes my breath away. Not because of the physical strength I need to do it but the immediate undeniable reality during those moments. My strong, fast, agile, and flexible son is in there trying to help me help him, and right now, he just can’t...YET
Jo still smiles and laughs everyday, and often. That hasn’t changed with the accident. His love for his mother is something to behold, he is so present with her, so engaged, so attached, it is amazing. I’m dad, I make you laugh, get in trouble all the time, and screw most things up the first time. I’m fun to be around and I know he loves me, but there’s simply no comparison with mom.
This tragedy has connected our family with so many amazing people it’s hard to comprehend. His nurse Alexis and speech therapist Sherri are so much more than caregivers and teachers, they are part of our family. Jo loves them dearly and our family is no different, they are so special to us. We are blessed at with all the people Jo has brought to our lives.
Jo is doing great overall. Performing in physical and occupational therapy. Trying to communicate, slowly but surely he is coming back.
Part of this post includes a link to a new fundraiser for Jo. We are not moving, we are here for the long haul. We were contacted by a dear friend at Aegis Living who is working with a team of angels to provide a message of hope to our family. They’ve been making plans to bring Jo upstairs one way or another, among many other things. I’ll hold off on details but an elevator is in the works! Much more details and story to follow!
As is with any family of 6 the first of the year is a challenge, and most of my “discussions” with my insurance start fresh, as does our substantial deductible. I want to be able to provide some help to our own cause, hence the fundraiser. If you can help great, if you can’t just give hugs when you see us! It makes a big difference!
Jojobinks your battle continues and healing is still underway. You inspire us everyday to never give up and offer perspective on what’s most important in life. We know you are coming back to us! We love you to the moon and back sweet angel, YOU’VE GOT THIS
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!
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!
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.
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...
I don't have a rich attention span in general, far less for orchestrated events like the royal wedding. But as God often does he finds a way to connect and restore your spirit when you least expect it. My daughter taped the entire 4 hour event and was watching this morning as I largely ignored the who's who of the wedding. Until I saw a man give a sermon with such passion I could not turn away. Not by coincidence it was about LOVE. He spoke to the world this morning, and it lifted me up and reminded me how lucky we are to have each other. How lucky we are to have the love and support that we do. How much love Jo always shares, and how much love there is in our home, in our friends and family, and in the lord. Everyone needs to hear his speech, the text is below, the passion behind his delivery is infectious, it was amazing. Maybe you're like me and this wedding isn't "news" but don't miss the message, it was meant for all of us...
Thank you Rev Michael Curry, and thank God for appearing when I least expect it and for reminding me why we are all here and in our personal situation what has gotten us this far, LOVE...
Set me as a seal upon your heart, as a seal upon your arm;
for love is strong as death, passion fierce as the grave.
Its flashes are flashes of fire,
a raging flame.
Many waters cannot quench love, neither can floods drown it.
The late Dr. Martin Luther King, Jr. once said, and I quote:
“We must discover the power of love,
the redemptive power of love.
And when we discover that, we will be able to make of this old world
a new world.
Love is the only way.”
There’s power in love. Do not underestimate it. Don’t even over-sentimentalize it.
There’s power in love. If you don’t believe me, think about a time when you first fell in love. The whole world seemed to center around you and your beloved.
Oh, there’s power, there’s power in love.
Not just in its romantic forms, but any form, any shape of love. There’s a certain sense in which when you are loved and you know it, when someone cares for you and you know it, when you love and you show it, it actually feels right. There’s something right about it.
And there’s a reason for it. The reason has to do with the source.
We were made by a power of love. Our lives were and are meant to be lived in that love. That is why we are here.
Ultimately the source of love is God himself. The source of all of our lives.
An old medieval poem says it:
“Where true love is found, God himself is there.”
The Bible, 1 John 4 says it this way. “Beloved, let us love one another, because love is from God; Everyone who loves is born of God
Whoever does not love does not know God For God is love.” (1John 4:4-8)
There’s power in love.
Love can help and heal when nothing else can.
Love can lift up and liberate for living when nothing else will.
There’s power in love to show us the way to live. Set me as a seal on your heart, for love is as strong as death.
And the love that brings two people together is the same love that can bind them together, Whether on mountaintops of happiness
and through valleys of hardship.
Love is strong as death
It’s flashes are flashes of fire. Many waters cannot quench love
Love can see you through! There’s power in love.
But the love of which we speak is not only for couples getting married or just for interpersonal relationships.
Jesus of Nazareth taught us that the way of love is
the way to a real relationship with the God who created all of us,
and the way to true relationship with each other as children of that one God, as brothers and sisters in God’s human family.
One scholar said it this way:
“Jesus had founded the most revolutionary movement in human history: a movement built on the unconditional love of God for the world and the mandate to live that love.” (Charles Marsh’s The Beloved Community)
I’m talking about power. Real power — power to change the world.
If you don’t believe me, well, there were some old slaves in America’s antebellum South who explained the dynamic power of love and why it has the power to transform.
They explained it this way — they sang a spiritual, even in the midst of their captivity, it’s one that says:
“There is a balm in Gilead
To make the wounded whole
There is a balm in Gilead to heal the sin sick soul.
If you cannot preach like Peter, And you cannot pray like Paul, You can tell the love of Jesus, How he died to save us all.
That’s the balm in Gilead.”
This way of love is the way of life.
They got it — he died to save us all.
He didn’t die for anything he could get out of it.
Jesus did not get an honorary doctorate out of it.
He wasn’t getting anything out of it --
He did it for others, for the other, for the good and well being of others. That’s what love is
Love is not selfish and self-centered.
Love can be sacrificial.
And in so doing, becomes redemptive.
And that way of unselfish, sacrificial, redemptive love can change lives
and it can change this world.
If you don’t believe me, just stop and think and imagine a world where love is the way.
Imagine our homes and families when this way of love is the way. Imagine our neighborhoods and communities when love is the way. Imagine our governments and nations when love is the way. Imagine business and commerce when this love is the way. Imagine this third old world when love is the way.
No child would go to bed hungry in such a world as that. When love is the way, we will let justice roll down like a might stream and righteousness like an ever-flowing book.
When love is the way, poverty will become history. When love is the way, the earth will be a sanctuary. When love is the way, we will lay down our swords and shields down by the riverside to study war no more.
When love is the way, there’s plenty good room — plenty good room — for all of God’s children. When love is the way, we actually treat each other like we are actually family. When love is the way, we know that God is the source of us all. We are brothers and sisters, children of God.
Brothers and sisters: that’s a new heaven, a new earth, a new world, a new human family.
Let me tell you something: Old Solomon was right in the Old Testament — that’s fire.
And with this, I will sit down: we got to get you all married.
The late French Jesuit, Pierre Teilhard de Chardin, was at once a scientist, a Roman Catholic priest, a theologian, a true mystic. His was one of the great minds and spirits of the 20th century.
He suggested that the discovery and harnessing of fire
was one of the great scientific and technological discoveries of human history.
Fire, to a great extent, made human civilization possible. Fire made it possible to cook food, thereby reducing the spread of disease. Fire made it possible to stay warm in cold climates, thereby marking human migration around the world a possibility.
Fire made the Bronze Age, the Iron Age, the Industrial Revolution possible. The advances of science and technology are greatly dependent on the human capacity to take fire and use it for human good.
Anybody get here in a car today? Nod your heads if you did. I know there were some carriages.
If you drove here this morning, you did so in part because of harnessed fire. I know that the Bible says I believe that Jesus walked on water, but I have to tell you, I didn’t walk across the Atlantic Ocean to get here.
Controlled fire in that plane got me here.
Fire makes it possible for us to text, tweet, email, Instagram and Facebook and socially be dysfunctional with each other. Fire makes all of that possible.
de Chardin said that fire is one of the greatest discoveries in all of human histories.
He then went on to say that if humanity ever harnesses the energy of fire again, if humanity ever captures the energy of love,
then for the second time in the history of the world,
we will have discovered fire.
Love is the very fire and energy of real life! Dr. King was right:
We must discover love.
The redemptive power of love.
When we do that, we will make of this old world a new world.
“My brother, my sister,
God love you, God bless you.
My brothers, my sisters,
God love you, God bless you.
And may God hold us all
In those almighty hands of love. Amen.”
share, share, share
Summer seems to have officially started in Washington but we all know we can count on nothing until July 4th or later. It is still nice to have such beautiful weather, always bitter sweet when you see how much jo wants to be back to himself, it can be heartbreaking. He seems vividly aware of what is going on outside, he can hear perfectly and the sounds of kids having fun clearly impacts his mood.
He is still receiving steady, regular, and consistent therapy 3-4 hours a day. Up in his chair, up in his stander, lying face down, sitting up straight, and even holding his posture on his own! It is exhausting work for Jo, he slowly getting back to where he was post pump surgery, and his casts will be removed in two weeks from his orthopedic surgery. He is doing very well all around.
The family is fairing well, Jimmy is behaving, and the girls are anxious to start their summer. We are talking with an amazing realtor about trying to find a single level home ASAP. We are also looking at building a ramp to the second floor or even elevator options. We cannot continue the way we are with one true living space upstairs (kitchen , dining room) and Jo downstairs. He has not been upstairs since the injury and we simply can't operate as a segregated house, Jo needs people close for company more than care, and we need him near us.
Those of you who follow the post might have noticed the FUNDRAISER added to the post. I shared the on facebook as well.
Text from facebook post:
So here is where we are, just over a year since the day that would forever change our lives. Most of you know the story, know the intimate details of Jo's recovery thus far, check the archives at www.jowitz.com. The ups and downs, the amazing fighter he still is, the miracle before us. We have to have him closer, the idea of a home without Jo surrounded by his family, or us in his presence is a pain we can't expect to endure for much longer.
He is with us, healing each day, stronger than we ever imagined and now we need him close, accessible all day. He has not been upstairs in our split level home since the day of the accident. The last day he sat at our dinner table was just hours before he was airlifted to children's hospital for life-saving surgery. It doesn't work, we have to be close, Jo may be close to controlling his own wheelchair and needs to be able to access all of us. We love our home and would never imagine moving but it is where we are, maybe for the next 5 years, perhaps the rest of our lives we need access. We need each other close to lift our spirits and let us all heal, it is our reality.
Take the time to get to know Jo and our journey. You'll understand why we need to change our home to one level for everyone.
Most have already given so much I am only asking that you share Jo's story far, wide, and often. Make sure everyone you know hears about Jo, where's a helmet, and thinks about Jo. Think of our family. I've learned that I am surrounded by an amazing community of people who care so much for us that I could never ask for more. They are the reason we've survived this long.
Keep us in your thoughts and prayers and thank you for all that you've done, we feel your love each and every day. Jo's got this, and we couldn't be more grateful!
We are reaching out to each of you not to do more but to share Jo's story, this blog, and his fundraiser far and wide. Forward it to any one you know, encourage them to read about Jo's journey. Get to know us and our family's journey in faith in hope. Perhaps someone has the means to help us get into a different home, perhaps not, it doesn't matter really. We feel so loved and blesses everyday, we could never ask for more. Pray if you do, think of us often if not, but always know we are moving forward! Jo is coming back in full, it wont be fast, it wont be easy, but we know it to be true. Tell everyone you know to where a helmet! Share on facebook, twitter, instagram, or whatever social media you use. Get his story out there for perspective on life, the joy of faith, and the power of God's healing. Be positive! Whether we reach our goal, or never receive another dollar we will find a way.
Jo's dextirity is returning fast thanks to his therapy. A motorized chair may not be far away. Insurance continues to deny far more than they approve and we will not be deterred. We've been told getting approval for the chair is always a challenge. Jo needs to regain some personal freedom! We need a place he can move unencumbered, we need a one level home, either now, or in the next year, it is our reality. We will save til we get what we need.
So share, share, share, everywhere.
Jojobinks you are a warrior and your warrior followers are on the march. We will get this fixed! You are doing amazing! We love you to the moon and back sweet angel!
angels among us
Hi everyone, it seems lately I always start these posts the same way. An apology for the length of time between them, and my inability to keep everyone updated as often as I would like. Jo is home and doing great, a brief update of the events of the past few weeks:
The family is doing well and this week was Bella's birthday, so hard to believe she is a teenager now! Last year her "party" was at Jo's bedside in ICU, a day we will never forget. We are still reviewing our options to get Jo upstairs. We've come to the conclusion that a ramp from the back deck is the best option. Now all we have to do is get it done, and fast for the summer! One of the most difficult realities of our situation is how much Jo enjoyed the summer. At times the nicer the day the worse we feel, and the more we remember what once was. We know that someday we will be back in that happy place, PLEASE GOD PLEASE.
The past week has been extremely tough for our family. We have chosen to look forward, focus on recovery, and never lose hope that Jo is coming back to us each day. The difficult part of this week is you are forced to remember what was just 12 months ago. The things he did in the days leading up to his injury, the words he said, those precious moments before our world was turned upside down. You cannot help but feel cheated and ask what if. What if we did something that day, spoke for a few minutes longer, went somewhere, just hung out together for a few moments longer, what might have been? Each of us have our own personal memory of the days leading up to accident that we recall so vividly. Once at the hospital we were focused on the next minute, next hour, making it through the day. Hours have led to days, days to weeks, weeks to months, and now we are one year from the worst day of our lives. We always look forward, recognize this is not up to us, and place our faith in Jo and God. But this week, and these few days, we can't help but glance back at what might have been, the pain can be unbearable.
Along the way we have been so blessed to always have someone there to lift us up. A random text of love and support, a warm genuine hug that lifts our spirits. Someone to cry with when it's the only thing you want to do the only thing you can do. A type of generosity I've only heard about suddenly allowing us to take care for our family. We are so blessed. I've learned that all of this support, and where and when it happens is not by coincidence. It always happens at just the moment you need it, and how it happens is almost always inexplicable.
As I walked through the airport the other day I was clearly at one of those moments, reflecting hurting, trying my best to be strong. The gravity of our families worries and struggles was weighing heavy on me in that moment. I suddenly heard a voice from my past, one I had not heard in over 17 years. A dear friend happened to be sitting at a departure gate, approached me and we embraced almost immediately. I snapped out of my trance. She contacted another friend from the a long time ago and we all talked. It was an amazing experience, that type of love in friendship is so powerful, it renews your spirit somehow . We laughed, I told them about Jo, we wept, and we agreed to never drift apart again. We all live in different places, with different challenges, but for a moment we were together and they saved me, being happy and laughing and was all that mattered. You can't tell me angels don't exist, you can't tell me they don't watch over us and make miracles happened, I am a witness many time over. Love and faith got us this far, and love and faith will carry us...every time
Thanks again for everything each of you has done to help us get this far, without a doubt we would not have made it without you. Jo is doing great, we have our faith and we know he is coming back!
Jojobinks, there are no words to express how proud we are of how far you've come. How hard you've fought, and continue to push each day. We know you will never give up and we will never leave your side. Rest, heal, and FIGHT! We love you to the moon and back sweet angel, YOU'VE GOT THIS!
So sorry for the length of time between posts. life marches on and it can be difficult to sit down and regroup. Jo is doing amazing, and most importantly hasn't struggled with pain in several weeks. Since being discharged from the hospital he has been very stable, calm, and slowly regaining more consistent use of his left arm.
As you may recall we elected to reduce the support from his internal pump to help Jo regain the progress he had made using his left side. After the pump was put in place it reduced his tone issues on his right side but the undesired side effect was a setback in the activity from his left hand. By reducing the scheduled dosage from the pump we can see slow restoration of his movement from his left side (arm/ hand). Also encouraging is the fact that reducing the pump support has yet to have any negative impact on his right side. As usual Jo continues to impress everyone with his strength and aggressive approach to his recovery.
Jo has been working hard on physical therapy, occupational therapy, and speech therapy. We have been blessed to work with an amazing in home rehab team at "Rehab without walls" and Jo has made great progress. Moving to his chair, sitting up, stretching, bathing, and typical movements bearing his own weight happen every day. It is obviously a challenge for Jo but he powers through. We are working hard to meet his mobility needs with upgrades to his chair and learning to move Jo without the assistance of the large lift.
Many of you already know that Jo no longer needs trach support! It is an amazing development and Jo and family could not be more excited about the removal. Jo had a very large boost in his spirits post removal and it was very emotional for Mom and Dad. We hoped and prayed that the day would come that he could remove the trach, when it finally happened we were overwhelmed with joy!
The most exciting development post trach removal is Jo's progress in oral motor and communication! Jo has the most amazing speech therapist. In fact we credit her with pushing us to trach removal, she knew Jo could do it! Now Jo can vocalize regularly and loves hearing his old voice again! We know his vocal chords are working and now we can work our way back to normal talking! In fact just this morning he said "mama" on command, it is amazing how far he has come! Jo has also made progress with swallowing and yesterday he ate yogurt! He was so happy! Jo was clearly tasting and enjoying "real food" and handling chewing and swallowing extremely well. It is very encouraging to see the brain reconnect broken pathways, Jo's eyes light up every time a new connection is restored, it is incredible to witness.
April marks the one year anniversary of Jo's accident. It will definitely be a challenge to overcome the emotional roller coaster this month has in store for us. We made it this far with the love and support of our friends and faith in God's plan, our hope is not dashed. He's got this!
In the near future we will be organizing to help build a ramp to the second level of our home this summer. We can't see not having Jo up and engaging with his friends and family, and that happens primarily upstairs. He needs to be where the action is! We are working on a plan to make that happen, it is something we must do! More to come!
Jojobinks you are amazing as ever. You have shown everyone strength that is beyond inspiring and we know you are only getting started! Keep pushing yourself to do more, you are making your way back in full, don't ever doubt that! We love you to the moon and back sweet angel, YOU'VE GOT THIS!!!