Skip to content

Guided by Grace

A Life-Altering Journey Through God's Hands

Jon and I fight a fight that most parents will NEVER understand. Being a parental advocate involves actively speaking up and taking action to ensure the well-being and best interests of your child are protected. And with Josh, we have been doing this since he was born. But have found as the years have passed that we have had to fight harder and harder. You see, Josh’s medical needs are not ones seen on the surface. They are not ones that you would even know he had unless you have walked the path alongside us. 

 

Most recently, Josh get sick with what we thought was stomach flu. But with all the other things he has going, we were just not too sure. By day three of symptoms, he was getting worse. Having severe stomach pain, unable to keep food in, clammy, pale, flushed, unable to really stand up, let alone stay awake. We took him to the emergency room. They begin running tests like blood work and EKG. Those come back inconclusive but pointed out that may have been either issues with the medications he was taking or stomach flu. We left thinking ok, we will call his doctor and find out their thoughts in the morning. The next day he was worse. I talked to his primary doctor, and he also didn’t like what he was hearing and said this time to take him to the Children’s emergency. 

 

That visit lasted six hours, with more blood work, a cat scan, and different medications given in the emergency. All for us to be told to take him to see his primary and gastroenterologist (GI) as they were not sure, but he may have had mono (yes, the kissing disease) or a problem with his medication. Mono test comes back negative, and so I get on the phone with a few of his doctors, including his GI. We are reminded of the upcoming appointment with the GI and wait to see him in a few days. 

Fast forward a week and a half, and we finally see his GI doctor. His GI was concerned not just about his already diagnosed EOE but that something else we could not see like maybe an ulcer. 

As a parent, you have to have a deep understanding of your child’s strengths, challenges, and unique needs. You have to know and understand what their baseline is so that when things are not right, you are able to get them the help they need. And when two emergency rooms tell you that it is just the stomach flu or a reaction to the meds they are already taking, but the feeling you get in your stomach is telling you that it is not, you need to FIGHT!

So educate yourself and become well-versed in the options that pertain to your child’s needs. This knowledge empowers you to navigate systems and advocate for appropriate answers because, from Jon and I’s experience, there is an answer. You just have to fight for the right one. 

Medical Advocate

A Saving Grace

It took us three tries to find the GI doctor we have now for Joshua, and he truly has been a God send as he continues to fight to find the answers as to what is happening with our son. He listens and treats my son as if he is the only patient he has (while we know that he isn’t :)) By developing a strong relationship based on open communication, mutual respect, and shared goals, we have been able to keep fighting to find what is wrong with Josh’s GI system. 

Fast forward to August 1st. Josh was scheduled to have an endoscope. One to check for his EOE levels and two to see if there was something else that could have been causing the pain. Well, he definitely found something. The opening of his stomach called the Pre-Pyloric Stomach opening, is averaged to be about 1 inch. This is an ideal opening for the food we eat to digest properly without trouble. Josh’s was not even half of that. 

The GI doctor took what he called a balloon tool to put in and expand the opening to that ideal size. After waking up from the anesthesia, when asked how he felt, Josh immediately stated that he was feeling much better. Even today, when Jon and I ask him how he feels, he says his stomach is much better, and he is not throwing up as much (something we have dealt with for years). He is not having stomach pain. He is able to eat food without feeling sick after. 

Josh b4 balloon
Josh after balloon

All of these events that happened truly were all God’s doing. The timing especially confirmed that. For example, the GI doctor usually doesn’t have a cancelation for an endoscope a week after the visit. Or how we already had a GI appointment scheduled just days after the emergency visits that was scheduled months prior. 

The preparation that God had already had his hands in working to help us provide us with the relief that Josh has needed for a long, long time. Being prepared to advocate and discuss with the doctors about our concerns and the knowledge from years of doing so. Providing confidence to express and advocate for necessary treatment Joshua needed. 

The journey we have walked with Josh has taught us to document as it can serve as evidence of your child’s journey and the steps taken to support his growth. Regularly communicating with the medical professionals to ensure everyone is on the same page.

The role of being a parental advocate, the determination, and the dedication we have has significantly impacted Josh and his access to appropriate resources and doctors. Contributing to fostering positive change in Josh not just from a physical stance but an emotional and spiritual one as well.

We appreciate all the prayers, well wishes, and support. We are grateful to God for the grace and strength that we know he is providing.

Support and Encouragement for Jameson's Medical Journey

For those who feel compelled and in a position to contribute, we have set up a donation campaign to assist with Josh & Jameson’s medical needs and the accompanying financial challenges. Your support, no matter the amount, can make a significant impact in alleviating the stress that comes with these difficult circumstances.

If you feel called to donate, a friend has created a dedicated campaign page on Give Send Go. Your generosity will directly contribute to easing the burdens that our family is facing and will be deeply appreciated.

If a financial contribution isn’t feasible at this time, your words of encouragement and prayers mean the world to us. Kindly consider leaving your thoughts and well wishes on the Give Send Go campaign page or below this message. Your positive energy and support are truly invaluable.

We understand that everyone’s circumstances are unique, and your care is a gift we cherish. Whether you choose to contribute, share kind words, or keep us in your thoughts, we are immensely grateful for your presence in our lives.

Thank you for taking the time to read about Josh’s journey and considering being part of our circle of support. We believe in the strength of community, and with your help, we can continue to uplift and inspire one another.

Leave a Reply

Your email address will not be published. Required fields are marked *


error

Enjoy this blog? Please spread the word :)

en_USEnglish