Updating my last post Jo is scheduled for his first surgery (backlofin pump) on Saturday. Initially we had hoped it would be done today but due to emergency surgeries for other children the procedure was delayed. It is disappointing only because with all of Jo's activity the reason for the pump is becoming more and more obvious. Jo is clearly uncomfortable more often and the pump will make a huge difference to his day! Saturday it is!
Jimmy was discharged today at about 230. He was fairly well behaved in the unit. Obviously we want that, but it is bitter sweet because without witnessing the challenges we experience at home in the unit it is very difficult to test the effectiveness of treatment. The unit also focuses on one on one counseling and discussion about why the patient is there, strategies for reducing aggressive behavior, and identifying triggers and solutions. These meetings are meant to be with the patient and family, and while we greatly appreciate being there for Jimmy, by design Jimmy himself doesn't benefit as much due to his complete lack of participation. He can't tell anyone what is wrong, why he acts out, what would make him feel better, or even comprehend why he is in a new place away from home. I've joked and said he started out thinking he was at camp, and by day 2 I'm convinced he just thought it was a boring camp....As a parent you also feel pretty lousy trying to convince people how bad your kid is. "No really, he's never this good" You can't help but feel like you are being judged for how YOU handle the situation, and whether or not you are the reason these things happen. Brutal, just brutal. In his 5 nights in the unit he acted out 1 time, damaged nothing, and basically relaxed his days and nights away. Despite a few times he "looked" frustrated there really was very little to report, and even less opportunity to see if the new meds are effective, as is always the case, we have to find out at home. We weren't gone from the hospital more than 30 minutes and Jimmy had already acted out. We got home and it happened again almost immediately. About an hour later once again. We will give the meds a chance to do their work and pray for the best Jimmy needs our prayers.
Jo continues to excel in his recovery. Physical therapy reports increasing speed and strength on his left side. Moving on command and at times with force. We hope for similar progress on his right side after the surgery to relieve the muscle spasms. He is doing great in occupational therapy and speech therapy communicating more and more with his computer, buttons, eye gazes, and he even calls the nurse via a button when he needs something! He is full of smiles, he works so hard that he does get tired but he works through it. The kid is so inspirational, and his smile is unforgettable. He has one over the hearts and minds of his caregivers and it is a joy to be around them and watch his progress. God is amazing, his gifts on full display, Jo remains a testament to God's love and the incredible faith of everyone in Jo's life!
The picture below is worth 1000 words. We are so lucky to be able to be that close to Jo after all he has been through. The bond between Jo and his mother brings me to tears more often than I'd like to admit. I am convinced a huge part of Jo's constant hard work and recovery is his overwhelming desire to hold his mother again. To play with her hair, to kiss and snuggle again, to say "I love you mom" like only he can. Like he repeated over and over that fateful day on the way to the hospital. Those days are coming back we believe, we know, it is coming.
As for dad often reflect how much I looked forward to watching Jo grow into a great man right before my eyes. The games I would watch with beaming pride, the athletic prowess he seemed to naturally possess, those rare moments when he asked me questions about life. I often reflect about these times and remind myself they are not gone, only delayed. My faith in Jo and God gives me the patience I need to make it through the hard days.
Jojobinks we love you and are here for you each and every day. You amaze everyone! Keep working hard, heal with God by your side he will not let you fall. We love you to the moon and back sweet angel, YOU'VE GOT THIS!!