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!!!