Developmentally, Isaiah progressed normally for most of his childhood—he had no major illnesses, no hospitalizations, and gave us no real cause for concern. It wasn’t until he was 10-years-old that a seizure blindsided us. After that one seizure, he recovered after an hour or two; but we spent three days in the hospital for observation. Unable to find anything wrong after a number of tests, we received a “generalized epilepsy” diagnosis, then went home and resumed normal life. For a little over a year, he was seizure-free and still progressing well through school. We did notice some slight delays with his fine motor skills as well as in school, but no major cause for alarm. Towards the end of 2018 and beginning of 2019, something seemed slightly off. It became more and more challenging for him to stay focused on any task; and, he would periodically tell us that his legs felt funny. Sometimes, he would stumble and have trouble walking for a minute or two. However, those episodes were few and far between. He had one more seizure toward the end of 2018; but, again, medical tests proved inconclusive.
Then, in May of 2019, our world changed. Isaiah had a number of severe, uncontrollable seizures early Saturday morning, May 4, 2019. He was taken by ambulance to pediatric ICU at BSA Hospital in Amarillo where they worked to keep him alive, determine the cause, and control the seizures. He was ultimately put into a coma when seizures did not stop. Once stabilized, he was flown to Cook Children’s Hospital. There we remained for three months, and there we tried virtually everything imaginable to control his seizures. From what I can remember, we personally spoke with doctors from Pediatric ICU, Neurology, Rheumatology, Nephrology, Infectious Disease, Immunology, Endocrinology, Pulmonology, Palliative Care, and Hematology after our arrival at Cook's. In addition to countless blood draws, IVs, tests, EKGs, x-rays, and constant EEG monitoring, he endured three spinal taps, two CT scans, four brain MRIs, two full-body MRIs, three days of hypothermia, two high-dose steroid treatments, three feeding tubes, a blood transfusion, four failed attempts at burst suppression, five rounds of plasmapheresis, and 37 days on a ventilator. By the grace of God, Isaiah slowly made miraculous progress (especially given his eventual diagnosis, which I’ll get into soon). He truly defied all odds and expectations as he faced the task of having to relearn basically everything. He began to swallow again. Then, to move again. Then, to smile again. Then, to use his eyes to communicate (albeit with a 30 second - 1 minute delay). Then, to hold his head up. Then, to whisper. Then, to push himself through hours of physical, occupational, and speech therapy to re-learn how to sit up, communicate, and to use a wheelchair. His attitude remained absolutely remarkable throughout. He did not complain. He did not gripe. He tackled each new task with a smile on his face...which brought a very teary smile to his Momma and Daddy's faces at each little victory. Eventually, Isaiah took his first steps with a walker. Then, on August 1, 2019, Isaiah mustered all of his strength to take the happiest steps our family had taken in months, steps that took him out the doors of Cook Children's Hospital. All told in 2019, he spent 41 days in ICU and 89 days total in the hospital.
Though he underwent every test imaginable, it wasn’t until the last few weeks of our time at Cook Children’s in 2019 that we finally received a diagnosis. His case was very much a mystery until that time. A full genome sequencing revealed a mutation in his DNM1L gene that ultimately triggers super-refractory status epilepticus. This diagnosis is terminal and non-treatable. It is very, very rare; and, there is no known cure. We've read all the case studies we could get our hands on regarding this genetic mutation (as far as we know, there are only 13 other known cases). None of the cases were as fortunate as we were. Isaiah shouldn't be alive, but God was gracious to us.
Our days never looked the same after 2019, but “grateful” doesn’t begin to describe how we felt about every single second of every single one of them. When we left the hospital, Isaiah was on a special diet, on a number of meds, using either a walker or a wheelchair, and could no longer be left unattended. Progress over the next two years was slow but noticeable. While he had leg braces, he stopped using the walker and wheelchair almost entirely. He made progress in school and speech, and was able to return to his beloved school for a few hours one day per week—where he was watched over by the greatest teachers we could have ever asked for. Though our “new normal” brought significant challenges (including an average of 3-5 seizures per week), it also brought us unspeakable joy, thankfulness, and a deeper appreciation for the God who walked with us through the fire.
Then, at the end of November 2021, what started out as regular facial twitching escalated into unrelenting seizures for hours on end. We didn’t know it at the time, but initial tests at the hospital revealed that he had caught a pretty bad case of RSV—which apparently triggered his condition. Since then, we’ve faced a similar battle to the one we faced in 2019. Every attempt to decrease medication or to increase his various physical, occupational, or speech therapies has been met with a return of seizure activity. I need to describe “seizure activity”, because that varies from person to person. Some of Isaiah’s seizures are short and less severe (only affecting his face). These typically last anywhere from 5 to 30 seconds. He’s had hundreds of these in the hospital. Some of his seizures are more severe and affect his whole body. These usually last anywhere from 30 seconds to several minutes. He has had hundreds of these seizures in the hospital as well. At one point, Isaiah had three hours of smaller seizures that progressed into six hours of big seizures…a total of nearly nine hours straight with only 5 to 30 second breaks in between. Careese and I held his hand the entire time. In hindsight, I think he was holding our hands as we cried through it all.
During this stay in the hospital (since November 22, 2021), he has been under general anesthesia twice to bring him out of status epilepticus, has been intubated and extubated at least three times, has had a vagus nerve stimulator surgically implanted, now has a tracheostomy and G-button; and, he remains on a litany of medications to keep him stable. While he remains unable to move (we have seen very sporadic intentional movement of arms and legs, but not much), he is currently able to track with his eyes and smile at us…which he does at just the right times.
I could sugar-coat it, but I won’t. Pretty much every single day has been beyond our worst nightmare. We have very nearly lost our son more times than we can count. Watching our then 10-year-old endure a single, solitary seizure all those years ago nearly broke us. Watching our now 14-year-old endure hundreds of seizures has left us beyond broken. Watching our whole family grieve is beyond heartbreaking. Yet, God continues to carry our whole family through this mess—via a variety of means—every single day. Often, it’s through our son’s smile in the face of abject adversity. Often, it’s through an army of wonderful supporters reading our updates and praying us through. Often, it’s through verses, songs, sermons, etc. We feel the total weight of 2 Corinthians 4:16: “Though outwardly we are wasting away, yet inwardly we are being renewed day by day.” Each day seems more impossible to face than the last, but God.
God is good all the time. Not because he prevents us from suffering or stops our pain and suffering when we declare that he should. He is good, well, for one, because he is God and gets to define what “good” is. But, also he has a redemption plan for our brokenness…and not just our brokenness but all human brokenness…and he has promised to carry us through until that day—a day when “Everything sad is going to come untrue, and it will somehow be greater for having once been broken and lost.” (Tim Keller).
In the face of our personal trial, we can attest that God makes good on that promise—the promise to carry us through this momentary breath of a life no matter the depth of the suffering on this earth and no matter how seemingly impossible the trials we all face. Day after day after day. God has been good to us.
Thank you for praying for the Wood family as we press on. Truly.
As most of you are aware, Isaiah lost the ability to make eye contact a few months ago. We hadn’t seen a smile in at least that long.
Until yesterday. Our wonderful boy blessed us all with eye contact and grins throughout the day. He smiled at his Momma and Daddy. He smiled at his siblings. He smiled at his grandparents. He smiled at his aunt. He smiled at his nurse. It was so good. We needed it. Our souls needed it. Perhaps you need to see it, too. So, please enjoy these photos of our Superman of a son smiling in the midst of the impossible.
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