We believe in miracles…do you?!  After several months of pain, bed ridden, sleepless nights, 2 bowel infections, rashes, loss of appetite, weight loss, extreme fatigue, depression, anxiety and more we were beginning to lose sight of the truth that the Lord provides, the lord will guide and the lord will protect and find a way! 
Our medical team has been fighting for us since August to find Joshua help for his pain. Several specialist, several Long day appointments, testing, lab work, and more no one has had answers. No explanation, just “he’s very complex, I’m sorry we can’t help you.” 
Insurance denials for the places that can and will treat him! Paying out of pocket just for a slight since of hope that it will relieve a little bit of pain. 
CHOC palliative team had us on a waitlist for CHLA for January. We prayed and prayed that we could manage things till then. 
Then last Friday, I received a call from CHLA. Yes I thought, I screamed when I saw the caller ID! We all gathered around the phone anxiously waiting for the anticipated appt! Only to hear her say, our drs can see your son in May. 
May?? We were promised a January appt! My son is bed ridden, can’t walk, can’t sleep, not eating, losing weight, pain medicine not helping! Please is there something you can do?! 
Ma’am I’m not sure where that information came from, but we have had no appts for January since June! How is this possible?! Lord please intervene! After nearly 20 minutes of pleading and asking for her to find a way, I took the April 28 spot.
Here is the miracle…yesterday afternoon she called back, I assumed insurance issue blah blah blah…
We had a cancellation for tomorrow at 1:00pm, would you like to confirm and do the spot through zoom?! I couldn’t say yes fast enough!!! 
Today, we met with the Dr through zoom, and I was given much more hope than I have had for months. When you have to constant look your child in the eyes and tell him it’s gonna be ok, and not believe it yourself that’s painful! 
Dr Holloway gave me the answers I’ve needed and wanted that no other Dr could provide. He confirmed that chronic pain is triggered by a trauma, whether it be illness, surgery, injury, hospitalization something triggered this nerve pain response. After a 2 hour appt, it was determined that during Joshua’s hospitalization back in April, that was anything but our ordinary GI stay, it was filled with trauma, stress, new treatment, IV infection, bowel infection, 12 days from our usual 5, that his body and nerves were in a dysfunctional state. He came home with several infections that took weeks to heal. Then he inured his back in late July, and his body and nerves gave up trying to recover. 
Without a multi modality plan of treatment Joshua will not be able to recover or heal. Basically since he’s had no movement therapy, pain management treatment etc, his body will continue to give up. And stop fighting. 
Dr Holloway said Joshua has a very long and slow road to recovery and getting back to doing things he now cannot. It will be months before we see progress, but progress is on the horizon. 
He will being a physical therapy prehab 2 x a week to get some strength back. Once he has completed a serval of week program, they will put him on the list for the outpatient pain management program which consists of 3 days a week 5-6 hours a day for 12 weeks. It’s a very intense all encompassing program with multi modalities. 
This program is not fully funded by the insurance, and I have accepted that and know it will be mainly out of pocket, but we need our sweet Joshua back! 
Please continue to pray for us, mainly for Joshua’s pain, and sleep. Appetite to increase, and for the stars to continue to align for him!