“If you’re seeking a life without failure, or adversity, or suffering, you are seeking a life without triumph or joy.” – Steve Gleason
It’s been a wild few months. I’ve had lots of blogs brewing in my head, but life keeps getting in the way, sleep continues to evade us, and at the end of the day there’s little energy left to write. So, these are my rambling thoughts for where life has taken us lately…
May 2016, I went to AutismOne; a conference where some of the top medical doctors and naturopaths in the field of Autism gather to discuss recent research, cutting edge treatments, causes, solutions and products/supplements/therapies to help kids with Autism recover. Because kids with Autism DO RECOVER. It’s what we keep fighting for. I’ve spent countless hours a day and many sleepless nights, laying in bed, reading, researching, searching, more searching…for answers, for treatments, for RECOVERY.
I pray constantly for God to guide us, show us His plan and which path to take. And He almost always does, yet not always on our timeline. We have tried a lot. We have failed a lot. Lots of things haven’t worked for Chase. It’s always a roller coaster. One step forward, two steps back. Some things have made him worse, but some things have worked and have made him better. It’s those glimpses of things getting better that give us hope and keep us fighting. And it’s the triumph and the joy that we keep fighting for!
At AutismOne I heard Dr. Richard Frye speak during one of the sessions. He is a highly regarded Child Neurologist and Director of Autism Research at Arkansas Children’s Hospital in Little Rock. He is a national leader in Autism research and has authored numerous publications and research studies. After hearing him speak that weekend I came home and called his office to book an appointment. I also met a mom that weekend that convinced me his assessments and opinons were worth the wait to get in for. It felt like a sign from God. That was the end of May, 2016. The first available appointment was March 21, 2017.
While we waited for Dr. Frye, over the summer we did a sleep deprived EEG, and again in the fall we did an overnight EEG, to determine if there was any seizure activity in Chase’s little brain. Also, due to the fact that he is still non-verbal, I felt like an MRI was needed to make sure nothing major was going on we weren’t aware of. I wanted to gather as much information as I could before we saw Dr. Frye.
His EEGs came back showing some “abnormal focal discharges” in several areas of the brain, but his neurologist at Vanderbilt did not feel like they were significant, and because he wasn’t having “clinical seizures” there was not much else recommended as far as a treatment plan. More research…
We continued over the summer, and still today, with classical homeopathy. We have seen some great progress with this, albeit slow, but feel like this is a safe and affective method of healing and detox for Chase. We also know, based on labs, that Chase has Lyme, co-infections, viral infections, high toxic metal levels (aluminum, barium, lead, mercury and nickel); he has two different MTHFR mutations which affect the body’s methylation process (i.e. ability to detox); and has high levels of yeast/candida and clostridia. But despite all of this, Chase has continued to grow and make progress. Some days are daunting, but we keep pushing forward and looking for answers. There is always HOPE!
Around October 2016 I had been researching MNRI therapy (a form of primitive reflex integration therapy, in a nutshell) and I stumbled across a chiropractor/functional neurologist here in Nashville. There are not currently any trained MNRI therapists in the Nashville area so I started reading through her website and everything on it just made sense. This form of functional neurological rehabilitation is specifically designed to target the affected areas of the brain which are at the root cause of developmental disorders such as Autism, ADHD, learning disabilities, dyslexia, etc. It seemed very similar to the MNRI therapy I had been researching so I felt like it was a good place to start.
We began seeing Dr. Melissa in November 2016 and she began doing “brain exercises” with Chase. Fast forward to a couple of weeks ago and Chase finally started trying to mimic us making sounds. This has always been the biggest struggle in speech therapy in all the years we had been doing it! He lost his ability to mimic any mouth movements or sounds around 15-18 months old, and until a couple of weeks ago has never even attempted it. To say I was thrilled is an understatement. It felt like a HUGE GOD WINK, right when we needed it most. And the look of pure joy and triumph on Chase’s face when he made those sounds completely melted my heart!
Our appointment with Dr. Frye got moved to the beginning of March so we finally checked that off the list. It was a long 2 days of travel, but Chase was a champ. After going through his file and medical history, Dr. Frye felt like Chase’s EEGs and MRI were significant enough to try out an AED (anti-epileptic drug). He sent us home with a prescription for Vimpat, as well as more lab work to test for mitochondrial dysfunction and various other things.
Tonight, after a long week of praying for peace in this decision, trying to put all trust in God that this is the best thing to try for Chase, we started the AED. It may or may not work. Of course we always pray it will help, but that’s not always the case. If it doesn’t, I know God has, and will continue to have, big plans for Chase. I know He will continue to lead us on this journey. Regardless, we will continue to search, continue to try whatever God leads us to try, and we will never give up hope that Chase WILL RECOVER!
I know this is a long post/update, but I wanted to give the background first before sharing that this coming weekend we will be joining our church and baptizing both the boys. It has been a journey to get to this point. We feel blessed to have found Christ Presbyterian Church after struggling to figure out where we fit in and which church meets not only our needs, but both the boys’ uniquely different needs as well. It’s been a struggle in the past to feel like we could leave Chase and actually enjoy a service without worrying how he was doing. But CPC has truly been a blessing. The special needs ministry there provides buddies on Sunday mornings to sit with kids in their classes while parents have the opportunity to worship without worry. We have been wanting to join for a while, but logistically couldn’t do the class until now. More importantly though, we feel called to baptize the boys as a way to honor God and commit to raising them in His image, and to give Him the glory! Through the failures, adversity and suffering, we hope and strive to glorify God in the triumphs and the joys of this!
“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.” ~Jeremiah 29:11
**Originally written 3/6/17