My mama is currently driving Josiah around town so that I can quickly write this update. I do not know where to begin. In my last post, I mentioned that Josiah had been very off the past few days and that he had been self-injurious. After sharing that post, things got dramatically worse for our boy. His self-injury has reached an all time high. He has been having 40-50 episodes each day. Every few minutes, he is beating his head with his hands or beating the back of his head against the floor. He has required 2 on 1 care at all times. And all the things that typically calm him are not working.
A few days ago, it became very clear that he was in pain and that something was medically wrong. Josiah is non-verbal so he cannot tell us what is hurting him. And so we are left to guess. I shared our concerns on Facebook, and I asked everyone to pray for wisdom. We have been suspicious of Josiah having lower gastrointestinal issues for some time. He has been seen by a GI doctor at least twice. But they have always said that they believed he had some constipation issues and nothing else. That night I did a very specific google search for "GI issues in non-verbal severely autistic children." There is typically very little information describing how medical issues present for non-verbal kids. I found a link to an Autism Speaks video that was very interesting. It didn't confirm anything for me, but it did peak my interest even more. And I began wondering if Josiah's troubles were more upper GI related. I then noticed a video in the search results that was over 30 minutes long. Josiah started waking up so I had to lay down with him and make a mental note to watch the video Sunday morning. Josiah woke the next morning in terrible pain and he became instantly self-injurious. I cannot begin to describe what it is like to wake to this. It is devastating every single time. I got him ready quickly and we started to ride in the van to calm him. I turned the video on so that I could listen to it while driving. As I listened to this pediatric GI doctor speak, it was like he was telling a story all about Josiah. It was a light bulb moment! This was what was wrong! Jeremy and I listened to the video again after he got home from church, and we then headed to the drug store to hopefully find something that would give Josiah relief. (See video below. I hope it helps another family!)The next morning our wonderful developmental pediatrician called me and agreed that we may very well have figured this out. He gave Josiah the preliminary diagnosis of GERD (Gastroesophageal reflux disease). "GERD is a chronic digestive disease. It occurs when stomach acid or, occasionally, stomach content, flows back into your esophagus. The reflux irritates the lining of your esophagus and causes GERD." From everything I have read, this can be exceptionally painful. And for a kid with Josiah's severe sensory issues, it is no doubt excruciating. He is miserable. Since starting treatment (which is a story in and of itself for another time - medicating AU kids is challenging to say the least), we have seen some improvement. But he is still in terrible discomfort and his self-injury (while slightly less) has continued. We are being referred to a pediatric GI doctor for an official diagnosis in the near future.
We are so heavyhearted for what our sweet boy is enduring right now. But we are thankful that God has answered our prayers and is giving us wisdom to figure out what is wrong. PLEASE continue to pray for Josiah. After a week of almost non-stop self injury, we know how desperately he needs this therapy room. Keeping him safe during self-injury is so very hard! He needs the therapy room so that we can maintain his safety and so that he has a quiet place to work through is sensory challenges. The therapy pool will be even more helpful now that we know Josiah is living with the chronic condition of GERD. It will provide his body comfort and calm in a way that nothing else can.
To those who have given to this fundraiser, we cannot thank you enough. To those who are heavyhearted for our boy and want to help, this is the perfect thing that you can do. We long to ease his pain and to comfort him. And we feel confident that God is using this fundraiser to provide a way for us to do just that.
Thank you for praying for our sweet boy! And thank you for giving to help change his life for the better!
Because of His Sustaining Grace,
Christy
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