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!!!
4/8/2018 01:07:16 pm
I am a long time friend of Joan Stolba. I’ve had the privilege of contributing to GoFundMe. And I’ve been watching Jo’s progress since last year. I am sooo blessed at his progress. He is an amazing young man. And he has an amazing family. Thank you for sharing Jo with me.
4/8/2018 01:33:02 pm
Thank you Susan both for your contribution and your prayers this past year. I am blessed to have you as a friend! Love you! ❤️
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