Josh's medical needs and recovery

In March a 16 year old boy named Josh that we have known for a while came to live with us. In June we went down to Texas and got legal guardianship so we could start helping him with things he needed. As I (Elizabeth) have always wanted to be a mom, this transition to being a family of 3 has been incredibly exciting and fulfilling.

Over the summer, Josh started experiencing seizures, blackouts, loss of muscle control when walking and just falling over, times of severe unexplained pain, migraines, difficulty breathing, difficulty seeing, and other symptoms. We started taking him to doctors in July, but no one understood what was going on or what to do about it. As things got more serious and we started having ER visits, sometimes by ambulance, we finally got a referral for an EEG and a neurologist at the Children's Hospital in Colorado Springs, 3 hours north of where we live. Their next available appointment was in January 2025. In the meantime, Josh was having seizures for hours just about every day with symptoms getting progressively worse. After a few weeks of me calling almost daily trying to get an appointment, we finally got a call September 6 that there was a cancelation for the next week with the exact series of appointments he needed. So we scrambled to rearrange work schedules and go up there on Tuesday.

However, Monday night September 9 he went to the local ER by ambulance again. This time they did about 6 different tests on him overnight, with everything coming back normal. Running on 2 hours of sleep, we drove up to Colorado Springs on Tuesday for the EEG, which was also normal. On Wednesday after having seizures in the hotel for 2 hours, we saw the neurologist. She decided things were urgent enough to do an immediate admission to the Children's Hospital for a 3 day continuous EEG.

From Wednesday to Friday night, Josh was hooked up to electrodes on his head monitoring activity 24/7. I (Elizabeth) was required to stay in the room with him at all times so I could hit a button and pull an emergency cord every time he had a seizure, whether big or small. The whole time we were there, Joshua (husband Joshua) was stuck at home because we had the only working vehicle with us, not knowing we would be there 4 days.

On Friday Josh was diagnosed with FND, which is Functional Neurologic Disorder. It was a relief to finally have a diagnosis, especially one that fits his symptoms 100% so there is no doubt it's correct. But it's also a very heavy diagnosis. There is no cure, only management and possible remission through treatment. The treatment involves OT, PT, Vision, Hearing, Speech, and Psychiatry in addition to medications and counseling. If you want to know more about what FND is, check out https://www.ninds.nih.gov/health-information/disorders/functional-neurologic-disorder or https://fndhope.org

To complicate matters, since Josh just came to live with us recently and we just got legal guardianship at the end of June, getting medical insurance for him has been a battle. We have applied for state aid, but the application has been pending for over a month with no way to speed up the process and no guarantee it will be accepted. In the meantime, we have tens of thousands of dollars of medical bills piling up, from multiple ambulance rides, ER visits, specialist visits, tests, and now the hospital stay. Since he technically has no insurance right now, I have been signing self-pay agreements for everything as there was no other way to receive care. I am not able to sign up for a sliding income-based scale or payment plan while the state aid application is pending, so the bills are just accumulating, and we have no idea how much of them we will ultimately be required to pay. In addition to the bills, there have been many out-of-pocket expenses along the way, including minimum deposit payments for doctor's visits, medication self-pay, fuel to and from the many appointments and emergencies (we live an hour from the nearest hospital and his PCP and 3 hours from the nearest Children's Hospital where the specialists are), fast food while away from home for all these appointments, and tons of missed work, which means less income.

Josh is scheduled to attend a special FND clinic at the Children's Hospital in Denver (4 hours from home) to get a full assessment from 6 specialists and a treatment plan. I do not know yet if the treatments will be able to be done mostly at home, at our local hospital 1 hour away, at the Children's Hospital in Colorado Springs 3 hours away, or if they have to be at the FND clinic in Denver 4 hours away. Or how frequent the therapies will be. Even if the state aid comes through and covers the medical bills (this one 3-hour appointment in Denver costs about $5,200), we still have fuel, food, possibly lodging, and missed work. Additionally, as I read more about FND and talk to others with the condition, it sounds like we will need to purchase some medical equipment for mobility. He has times he can't stand, or he is walking and then without warning falls to the ground.

Because of this, we are asking our friends and family for help. I really have no idea how much money we need to cover everything, because there is still so much unknown, so the goal is just a number. Honestly, anything helps, big or small. Because I am a teacher and don't have much work over the summer, this is already our most challenging time of year to get through before money starts coming in from school districts. But all the work I have been missing means not as much money is coming in. We are also now feeding 4 mouths in the home as Josh's older brother has also been staying with us the past few weeks.

Thank you for taking the time to read our story, donate if you feel led, share, leave encouraging messages, and most importantly pray for us. Please pray that the treatments will help him get relief and be able to live his life again. Pray that the state aid comes through and we don't have to carry the burden of wondering how much of these bills we will have to eventually pay. Pray that God helps our family to grow strong and support each other through the stress, not snap at each other because we are all empty and hurting and exhausted. Pray for provision for our needs, including getting our second vehicle working again so when I have to take Josh to these appointments far away Joshua and Josh's brother aren't stranded.

Jeremiah 29:11 says

"For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.