Sorry I haven't written in a few days. Jo has really been in recovery mode since the skull surgery. At times it hard to update when there isn't much to say other than we hope he keeps improving. Well true to form Jo seems to be back on a solid path to recovery, but the last few days have been some of the hardest for mom and dad.
Jo had been struggling with obvious pain and discomfort for what seems like forever but actually only amounted to about 5 days. For anyone who has ever seen a loved one in pain, and felt helpless in relieving it, I'm sure you understand just how difficult these times are. If it is your child, it is an indescribably horrible feeling. Jo would wake up, and scream silently in pain numerous times a day, and even more so at night. We tried multiple pain relievers with only minimal effects initially. We tested for everything under the sun, including another CT scan. The process of waiting for results from that 15 minute procedure is torture. Anytime they review Jo's brain, mom and dad hold their collective breath until the moment we receive an update. Fortunately nothing new was found and we thank God. They did discover a staph infection which is scary but with antibiotics and the amazing care here he should resolve shortly, as of this writing his temperature is normal, a great sign.
Jo has been so strong and courageous throughout this entire time, he just did it again. It seems what he needed more than anything else is time. Noe over a week past his procedure he is sleeping peacefully through the night, and during the day responding well to PT/ OT. For the second time we put him in a wheelchair to test his tolerance, not surprising Jo passed with flying colors. We hope to build on his time in the chair daily, culminating in a walk around the hospital! Pray for this!
Jo is such an active kid, and he has been in a bed for 60 days. Just writing that down crushes me. We are certain that a big part of his uneasiness is just being angry about being in bed, we are going to get him out and about soon!
Mom and dad are planning for discharge within the next 2 weeks. We are training on home care, interviewing nurses, arguing with insurance, and the angels continue to put the finishing touches on our home. Summer has all but started for the other kiddos and we are trying hard to return to some sense of normalcy for everyone, I really don't think we are fooling anyone...Jo is a centerpiece of our family, such a crucial part of who we are, without him we like a car with a tire with a slow leak, you can get around for a little while but eventually you realize we have got to get this fixed. For us that begins with having him at our home, away from the amazing care, but with us everyday in our house. We are terrified but excited for the next phase of Jo's recovery, it is coming soon.
Jojobinks mommy and daddy can't wait to get you moving around. We know you are fighting so hard to get back to yourself, we are going to help you get there soon! Rest and heal with God one miracle at a time. We love you to the moon and back sweet angel, you've got this!