Victories and Answered Prayers

In May we made the very difficult trip(I flew with an autistic toddler) to Austin Texas to see a doctor who specializes in Autism and has great success in helping them improve and many have even recovered fully and no longer test autistic or meet the criteria for the diagnosis. He has seen more improvement in the more severe cases than in the milder cases. Jonah’s diagnosis is the most severe form of autism. Level 3 or also known as profound autism. This means he is on the farthest side of the autism spectrum in terms of severity. We declare in Jesus name that will change. Dr. Kendal Stewart is doing so much to help these kiddos. He does not accept insurance, which is the only way he can help them. This allows him to treat and use modalities that the insurance companies want to refuse to pay for. If you don’t understand how it works, I’ll explain. The insurance companies (which are not doctors) determine what a medically licensed doctor can and cannot do to treat their patients solely based on what the insurance companies want to pay for. It’s not what’s best for the patient, it’s about money. When a doctor chooses not to work under the direction of an insurance company, they are free to treat as they wish. This is often where you find doctors doing real work to help people. Dr. Kendal Stewart in Austin Texas, is one of these doctors. He did very thorough testing on Jonah which included genetics on how his body functions, where his weakness and strengths are. From this he created a very customized treatment plan to use in conjunction with his expertise. Jonah was put on an anti-inflammatory medicine, pure folinic acid powder, CBD, palmitoylethanolamide(PEA) and a peptide called Dihexa. This peptide is designed to force neural synapsis connectivity at 1000x more effective than the body’s natural ability to do so. It is called synaptogenesis.  

When we left Texas Jonah was chewing his arms up, biting himself to bruises, pulling his hair out, and having over all very rough SIB (self-Injurious behavior) episodes, He was only sleeping 3 hours at a time and was spending much of his night wide awake. (severe insomnia is a symptom of both autism and the O’Donnell-Luria-Rodan Syndrome (ODLURO)) so he has fought sleep from day one of his life and it’s played a huge role in affecting the quality of life for not just him but us all. 

It’s been an answered prayer to report that Jonah has not had any self-harming episodes since we started the regimen from Dr. Stewart AND Jonah sleeps through the night most nights! This has been a huge victory, and we are giving God all the praise for guiding us to the right people and right regimen for these prayers to be answered.  We are hopeful this is a permanent change! In addition to this, Jonah has shown some real improvement in his overall demeanor and disposition. Every one of his therapists have told us he is not the same kid as before Texas. He has gained new ability to tolerate his environment, including his little sister. Haha He is more curious and I find him examining objects and studying them, he has shown new interest in some toys and has played with a few in his own way. There has been a huge shift in the quality of our daily lives since Texas. 

We have 3 main goals for Jonahs’s life right now. 

1.      To have a quality of life

2.      Communication/speech

3.      Mobility. 

He now has the quality of life. He did not have this before Texas, so this is huge. He has some real joy in his life and it’s been amazing to see and so encouraging. 

The next most important is communication. Many might think that it’s odd that we hold communication over mobility in priority, but people can live fulfilling lives in wheelchairs, hold jobs, and navigate their world even when they lack independent mobility. You cannot navigate the world, express needs, desires or function in society without communication. 

These intensives we are raising money for help the brain and body to make these connections and speech emerging is often a bi product of these neurological intensive therapies. They work the body and mind equally. As he gains physical strength, mental cognition comes as well. It is how the body is designed. Often times the brain will not move on to more complex development like speech until the body has the ability to develop motor skills such as crawling, or walking. 

Aside from this I am also happy to report that while his gene mutation is linked to the heart and eyes as well as the brain, he has not shown any heart issues at this moment and we have not yet had his eyes evaluated. That will be down the line since we know he can see, we just don’t know yet if he has any vision issues. His hypotonia (low muscle tone) diagnosis can affect all muscles including the muscles of the heart and eyes. So we monitor all this closely. 

Thank you for celebrating the victories with us and continuing to pray for breakthroughs for our baby! God is doing a mighty work in Jonah and he will one day tell the world about it. Thank you for being a part of his story. 

We love you all dearly. 

-The Mabes