We've been busy adapting and adjusting to the new "normal" around here. Since our last update, we've seen an upward trajectory overall, but the day-to-day continues to be rather rocky. Healing isn't linear, especially when you're a little kid. 

Some answers to prayer:

We are now only using the wheelchair part of the time, which is the most visible sign of the hard work Paton has put into his recovery. We still keep it (and the walker) accessible, especially when we go out, but it's up to him whether he needs it or not! 

His sensitivity to light and touch is far less these days. Sound continues to be an issue, but we've seen his threshold for the grow, which is good, because a household with six people in it will certainly be noisy at times! All of these sensory issues become a greater burden during times of strains, but we are developing ways to work *with* Paton in this and help him figure out ways to cope.

We've been blessed to find a great group of physical therapists, occupational therapists, speech therapists and counselors. It took a LONG time but we finally have a team who is willing to do what it takes to get Paton to a healthier place.

Mentally, our kiddo is showing more awareness of his own ups and downs, which means he is able to communicate his needs a lot better. He's also far more receptive to outside encouragement and gentle nudging from his therapists, which any parent will agree is a big deal. 

Prayer requests:

We still don't have a solid diagnosis and have struck out with every hospital that takes "weird" cases. At this point in time, it's too expensive to continue down that route, and we are doing our best to work with his current team and some online specialists we have found. Please pray that we would have wisdom as we continue to research on our own, and for the Lord to give our providers insight into Paton's needs.

The feeding tube is truly a blessing and a curse. It causes a lot of discomfort for Paton but it has enabled us to consistently address feeding and hydration problems. We continue to go back and forth over the net gain of it but for now, we are thankful for the ability to feed our kid when he can't eat, and hydrate him far better than we could before. Please pray that the Lord would help ease some of these issues for Paton so he can enjoy eating again!

Pain levels are still on the high end and his blood pressure/heart rate issues haven't responded to many treatment options. While he has come a looooooong way (sitting up, standing for short periods, walking and even trying to jump a bit), it still means he is on the edge of passing out and feeling "off" all the time. Frustrating for him, at best. Please pray for us to find the right combo of supports to get these areas under control!

We are starting to look more intentionally at clinics who offer weeks long "intensives", specifically those working with brain injury and stroke victims, something many doctors have said Paton mimics in a lot of his symptoms/responses. Please pray for wisdom as we look into these and consider the costs for each program (it's a very expensive treatment option).

Are we heading in the right direction? YES. That said, the enemy has taken a lot from Paton, and our family, and some days, it can be challenging to see how far we have left to go. Every week, Paton attends four separate therapies and usually has some additional appointments, and this schedule will continue for many months. We are simultaneously full of thanks for the progress and full of weariness. Both/and. Please pray for Paton and our family as we seek to make the most of each day and focus on healing and stamina. 

Thank you for continuing to pray for us and support us with these financial burdens. We wish we could hug all of you and let you see just how much your support means to us!

Apologies for such a long wait! In some ways, the weight of the last year is starting to catch up with us (Caleb and Genna) and we are finding ourselves a bit overwhelmed communication in general. 

Children’s Hopital of Philadelphia:

We finally got in with the diagnostic team up at CHOP. While they did NOT take our case or discuss further testing, they did put in our case in with their Dysautonomia team. This is the team that handles problems with the nervous system, specifically the areas that are “auto pilot” systems, like heart rate, blood pressure, temp control, etc. We had confirmed a year ago that Paton has relatively severe issues with this, including HR/BP issues that get much worse when he is sitting/standing (one of the big reasons he feels much better laying flat).

Their theory is that Paton’s issues all stem from his hypermobility and this nervous system dysfunction. In other words, they did not have any NEW info or ideas for us, which was very disappointing, but expected. They are however, very concerned about Paton and are helping us put pressure on local doctors to take things more seriously. This includes our next big decision: trying out a feeding tube. When your auto pilot functions aren’t working well, it’s very common for digestion to be affected with everything else. This has made eating *enough* very, very difficult for our boy. Please pray that we can either find ways to get him gaining weight again, or that a feeding tube would be approved by insurance and would take some pressure off Paton and help him get the energy he needs to heal. ♥️

Richmond Doctors:

We also are now working with a local intergrative doctor. He is working with us on two fronts: symptom management and (Lord willing) some underlying dysfunction. At this point, it’s hard to know what to treat when we have a host of issues that are a result of the last yearz So our goal is to continue helping Paton *feel* more comfortable so he can put in work to get stronger! We have seen some improvements with his mood and desire to interact with us as a family. Hearing him giggling with his brother or seeing him smile at his sister has brought so much comfort to us as parents. Thank you, everyone, for all your prayers on behalf of our family. 

There is so much work to be done going forward. The doctors told us to expect 18-24 months of rehab to get him to a healthy baseline again. We trust God and His timing and will continue to rejoice in every answered prayer.

Prayer Requests:

-Insurance to cover our appointments, travel, and lodging for the Philly visits (at least 3 scheduled), 

-Wisdom in regards to Paton’s diet and how to best support him, especially if that includes a feeding tube.

-Hope for our boy. The good days are good, but the tough days are TOUGH. It’s hard for him to feel excited about improvements when it’s so up and down. Some days he’s able to walk to the car or play a board game, then the next day he can’t talk or walk. That’s terrifying for a 10yo. We as parents understand that healing is always going to be up and down, but it’s difficult for someone that young to grasp. 

Again, thank you for sharing, giving, and praying for our family. Thank you also to everyone who has written to Josiah-it truly makes his day and he keeps every card. 

We continue to thank the Lord for every prayer and donation from you all!

If you want to send notes or gifts to Paton (or his siblings, Josiah and Haven), you can do so here:

    Paton Green P. O. Box 862, Powhatan, VA 23139

Two big answers to prayer:

1. Removing some meds from the line-up has been such a good move. Paton is more joyful, more aware of things tasting/feeling/looking good, and able to handle short intervals around us again. His toleration of light/sound/touch is still very limited, but there is more threshold there for one at a time. This alone has felt like a massive weight off our shoulders and has allowed us to breathe just a bit. ♥️  

We have an appointment at CHOP (Children’s in Philly)! We head up there for a 1hr consult on April 30th. At that point, they will hear our case, deliberate, and either accept us…or not! There is a chance Paton could still get into a week long “intensive” rehab program there, but that will all be discussed while we are there.

We also have an appointment with a local intergrative Neurologist here, which we are really excited about and hope that will give us more solid advice for diets and supplements while we continue to rule out things in the medical sphere.

Please pray for CLEAR communication and for wisdom on our parts.

We are also requesting to be put on the waiting list for both John Hopkins and some other hospitals-just waiting to hear back at this point. There is a lot of waiting to hear back when going through the medical system. ;) 

A lot of people are asking what we are trying to rule in/out. Without giving all the details, here are some of the things we continue to explore:

Functional Neurological Disorder, Lyme and other viral components like EBV, CSF leaks, and mitochondrial dysfunction. Some of these things have been “ruled out” through labs, but several physicians feel like Paton maybe a “unicorn” and simply doesn’t fit in the box.

We need *very clear* directions to proceed, given how fragile Paton is, and we know the Lord can answer those prayers. Please pray for us to have the energy and discernment necessary. 

If you want to send notes or gifts to Paton (or his siblings, Josiah and Haven), you can do so here:

                                   Paton Green P. O. Box 862, Powhatan, VA 23139

We've had a few closed doors this week. While we asked God to make things clear for us-and He answered that-it was still challenging. This has been a long road and it's difficult to want to help but not know how. We will continue to explore more clinics, doctors and treatment options until we find the right fit!

Paton has responded well to the med changes and we've seen a really significant shift in his mental health that has brought tears to our eyes several times. Even with some worsening physical symptoms, his ability to notice and celebrate good things and spend some time interacting with us is a victory in itself. God is good.

We wanted to give a little insight into why this fundraiser has been so necessary for us:

The doctors and clinics we are looking at are all considered "out-of-pocket". It's anywhere from $250-$2000 just for initial consults, let alone pursue treatment or get testing. 

Just ONE of the tests we are looking into is $1,800.

We are looking into diet changes that double our food budget.

Supplement protocols we've attempted in the past ranged from $200-500 A MONTH.

Alternative therapy options in our area-like hyperbaric oxygen chamber use-are $150 per use, and you typically use them 10-20 times. 

We are looking at long term PT/OT, and possibly week long in-patient stays that cost thousands, before adding in travel/lodging expenses. 

Insurance changes this year will probably end up costing around $600 (or more) a month-and that's before deductibles and co-pays. 

It all adds up quickly, and having the additional help so we can breathe a little has been such a sweet blessing. We could not be pursing the help Paton needs without the help all of you have provided.

Thank you, thank you, THANK YOU from two very humbled and hopeful parents.

For the first time in months, we are seeing smiles. He even joined us for a family game night. Looking over to see him smiling and reclining comfortably-not crying or unable to communicate-was such a massive blessing to the entire family.  Tweaking some medications has led to the first breakthrough we’ve seen in MONTHS. While it’s just back to his 2023 baseline, we are rejoicing and so thankful we have figured out one more thing that doesn’t work. Parents, trust your gut when it comes to medical decisions. ♥️

We are moving forward, applying to Children’s in Philly as well as a few more specialized neurologists out of state who work with “complicated kids”. Thanks to your donations, we’ve been able to gather and send a lot of these forms, which apparently can be a very complicated and expensive process!

We have also invested  in two high grade items for Paton’s health, one of which was a red light and was previously out of our budget. It’s such a blessing to have access to a few more things that could help. THANK YOU!

Another day, another doctor. Paton’s upper endoscopy looked really good today, with no obvious physical abnormality causing the intense stomach pain. Thankful for more “nothing bad” reports. ♥️

We are gathering leads, paperwork, records, and advice for the next few weeks. We have tentatively narrowed our options down to Children’s Hospital in Philly, as far as research hospitals go. Let us know if you have any contacts there!

We are also reaching out to a handful of functional neurologists and potentially a few Lyme literate doctors, both in Virginia (our home state) and other states.

At this point, we are at somewhat of a crossroads. There are therapies and things to try here, but we won’t want to use the generous donations and Paton’s limited energy on things that have not worked well thus far. We don’t want to travel hours away for second opinions without Paton’s doctors giving their referrals and notes, for a variety of reasons. There’s a lot of decisions looming over us right now, and we ask that you would continue to pray for wisdom and doors to be opened (or closed!). Genna is spending 2-4 hrs a day calling, messaging, collecting and sending info, wrestling with insurance, researching and generally doing all the things necessary to get good patient care for Paton. It’s really shown us how broken the system can be, and what a massive difference good communication can make! 

Thank you for your continued support and prayers. Please feel free to reach out with questions! 

We finally made it out of the hospital! Being in-patient was something we felt confident about, but it came with a lot of traumatizing experiences. Ultimately, we feel like we checked a few more things “off the list” but have been left with even more questions.

Paton was given a tentative diagnosis, but it doesn’t take into account his years of prior health issues or explain any root causes or recent lab values. So while we will continue to chase down routes for it, we are very confident there is a missing piece or underlying disfunction that our current hospital is unable to explore.

We did start the ball rolling for out of state care, probably in Philadelphia, but it will take time. And it will most likely not be covered by insurance. 

While his health feels urgent and we want to help him RIGHT NOW, there are a lot of moving parts. We need to line up some things in order for him to receive the best care, wherever we end up. 

We are also exploring some new doctors in NC, but again, all of that specialized testing and visits and treatment would be out-of-pocket. 

So please continue to pray with us for wisdom, especially as we explore leaving the state.

We believe there is healing that can happen for Paton. We believe God will use all this suffering to shape him. 

And please continue to share this page so we can access the care Paton needs now and in the future. 

Thank you for joining us in prayer, in provision for our family, and for fighting for Paton. ♥️

Hello and apologies for the delayed update.

On Saturday we had enough results back to clear Paton for a medication protocol for his “intractable migraine”, the main reason for this hospital stay. This was a very targeted, very heavy duty protocol and we knew it came with a lot of potential side effects.

First few doses went great, but after the Sunday morning dose things got very bad, very quickly, and we spent the rest of the day doing everything possible to help him. We aren’t going to share more details because it was quite traumatic for all of us. Finally, around 8:30/9 that evening, we got things settled down and he was able to sleep through the night. Monday, after a LOT of discussions and reviewing EEG results, we decided to swap some things around and then proceed with treatment. It’s been nearly 24 hrs and so far, so good! He’s reporting a small reduction in pain, and seems somewhat more steady on his feet, which is SO EXCITING FOR US!

We will be released after our last dose on Thursday. At this point, while we are on great terms with the doctors, there’s not a lot more they feel like exploring with us. So we have some decisions coming up! Where to go and how to keep looking for the underlying cause for Paton’s issues? At this point, we are planning to go out of the state this weekend and request help from some of the bigger research hospitals. We will keep posting updates as we have them.

We read all the prayers and messages to Paton. It’s important to us that he sees how the Body of Christ responds and how much love and support there is within the Church for those who are hurting and weary. Thank you for helping us do that!

Hey folks! Thank you again for all the prayers and support. It means so much to us.

We originally came in to the hospital for a specific and targeted protocol to help Paton. However, once we arrived and started to confer with the doctors, it became clear that they were very confused and shocked at his present condition. This was frustrating to us, as we have been communicating our deep concerns and every time something changed or worsened, we immediately contacted them. 

All that to say, there was a lot of shuffling and a LOT of consults. We tabled the original plan for now and are getting some additional testing-namely a lumbar puncture to assess spinal fluid pressure and potential infection-and waited 24 hrs to get those sorted out. We are now waiting on results, and may still proceed with the original plan to see if it helps Paton, or not. It’s all VERY up in the air and there’s a lot of confusion and uncertainty right now. We just don’t know what the next few steps will be. 

Paton is physically responding well to 24/7 IV fluids, so that has been wonderful to see. More color, a bit more appetite, a little clearer in thought. 

 He is very discouraged about the change in plans and is struggling to understand the  “wait and see and adjust” status. 

We will update as they update us. Thank you!

Checked into the hospital last night and will be starting a few things today. He’s here for a specific protocol, with the goal of getting rid of his constant migraine or to rule out a few other things. Our prayer is that as doctors see him and work with him, they will understand the depth of the issues better…and maybe have some ideas or things to explore. 

Paton is a trooper but is not enjoying all the hubbub. It’s a big change for him, because at home he has a cozy and quiet room. Hopefully we can get back there soon. 

Thank you for praying and giving. It enabled Caleb to take off 2 days next week so we could tackle things as a team. 

We showed Paton the amount raised in just a few short days. Thank you so much to everyone who has shared, donated, and prayed for us. 

This week we used funds to:

-Purchase two supplements and some comfort measures for Paton during the hospital stay

-Purchased food and did some batch cooking so we can continue with Paton’s healing diet while in hospital (no mean feat)!

A few folks had requested an address to send letters and packages. Paton (and Josiah) would certainly love that! *

This is not our personal address*

Paton Green

P.O. Box 862

Powhatan, VA 23139