I apologize for not keeping everyone up to date but let me start by saying Jo is doing great! He seems to improve a little bit everyday, and it gets hard to keep up with postings in the midst of school starting and life in general.
Jo should be starting 8th grade this year, obviously this is a bitter sweet time for us. It is great to see Jo making progress but equally painful to see life move on around him so rapidly while his recovery moves so slowly. He should be at school watching his younger sister in 7th grade. Secretly Bella was really looking forward to having her big brother with her at school, it breaks our hearts that he can't be there right now. One day at a time...
Jo is so alert and happy when his friends visit it is just amazing how engaged he is. FULL EYE contact, smiling, almost laughing! Jo loves his buddies so much, he loves hearing them laugh and giggle, he wants so badly to make them laugh again, soon we hope!
Jo had his first in home physical therapy appointment and he did great! For the first time in 4 months Jo sat straight up in bed! Dad supported his back and mom his legs as he sat on the end of the bed. What amazed us both was his strength. We had grown used to thinking Jo was still to early in recovery to support his own body weight. We both felt he would be to "loose" to sit up straight, we were definitely wrong! Jo held himself straight up with minimal assistance and his head and neck needed no support at all. He smiled and turned his head left to right, it brought us both to tears to see such progress! It also immediately reminded us we have to keep pushing Jo and believe in his healing. God is working miracles and we need to let Jo show us! Our goal is to do this at least 2 times a day gradually increasing the total time sitting up. Small steps but very encouraging!
Jo is also communicating via blinking more. He can respond "yes" with one blink and "no" with 2. It is so powerful to include Jo with discussions about his care, comfort, preferences, and just to know that he is in there fighting his way back. He regularly watches Netflix (mostly walking dead marathon). It is so powerful to watch him engage in something as simple as watching TV, it is such a wonderful sense of "normalness". Jo performs miracles every day!
We continue to argue over everything that insurance provides and/or doesn't provide. Just the other day we realized that over 90% of initial requests have started with a denial only to be approved weeks later. They delay hoping you'll forget or give up, whilst leaving the patient without what they need; playing this stupid approval process game. If you run out of something and they have yet to approve the next shipment, you're left with no options but to purchase what is needed now. It is a horrible cycle, it can be maddening to say nothing of the cost. Jo should not be receiving his first PT appointment 4 months later, but here we are. The amazing people caught "in the system" understand how it works and can do nothing but empathize. We keep fighting, keep pushing, and despite the challenges we have done better than most, thanks to the amazing support of our friends and family. Thank you all!
Jojobinks we love you so much and are so happy to see how strong you are. Mom and dad are right here waiting patiently for more miracles. We are going to push you and give you every opportunity to show us how amazing you are! Be patient with us and help us understand what works and what doesn't, we will not let you down. Rest with God and let his healing hands continue to perform miracles. 1000's of people are praying for you and know that you are coming back to us, day by day. We love you to the moon and back sweet angel, YOU'VE GOT THIS.