Isaiah’s Story

Site created on May 13, 2019

Thank you for visiting Isaiah's page. I will attempt to sum up 100+ posts below. There is very little chance that I'll do it well. But, here we go...

Isaiah had a number of severe, uncontrollable seizures early Saturday morning, May 4. 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.

On Wednesday, May 8, he was flown to Cook Children's Hospital in Fort Worth. He remained in Neuro ICU on a ventilator, intubated, and heavily sedated. For two months, every attempt to decrease and/or stop his sedation medication was met with a return of seizure activity. 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 since our arrival at Cook's. In addition to countless blood draws, IVs, tests, EKGs, x-rays, and constant EEG monitoring, he has 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, 37 days on a ventilator, 41 days in ICU, and 89 days total in the hospital. We came very, very close to losing him more times that I can count.

Our journey has been very long. After a month in a medically-induced coma, Isaiah came out unable to swallow, move, or communicate. After a few days of slowly regaining the ability to swallow, he smiled at our voice. It was the first sign we'd had in over a month that Isaiah was still "in there." I can't describe the emotion of that moment. Then, very slowly but surely, he started to move his eyes to communicate and to move arms slightly. Then, abruptly and awfully, he slipped back into status epilepticus and was immediately intubated and induced into a coma. After coming out of a coma a second time (weeks later), he was again unable to swallow, communicate, or move.

At about this time, we finally received a diagnosis. (His case was very much a mystery until the last few weeks of our stay at Cook's.) In addition to a number of other issues (including encephalopathy), a 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. None of the cases were as fortunate as we were. Isaiah shouldn't be alive, but God.

Over the course of the next several weeks, Isaiah defied all odds and expectations. 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, use a wheelchair, etc. 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, 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. 

Now that we are back at home, we remain very much in need of prayer. His diagnosis and prognosis is still scary. Our "new normal" involves a lot of medications, therapies, visits with doctors, and a lot of time emotionally on edge.  Thank you for praying and joining us on this journey. Your presence here and your prayers bless our family more than you know.

Newest Update

Journal entry by Josh Wood

The short version:

Thank you for praying. Starting September 4, Isaiah started running a fever and feeling lethargic. The fever went away quickly, but the lethargy remained. A really rough 7-day span (of up to 5 seizures per night) followed. Thankfully, Isaiah has improved quite a bit over the past few days. His nighttime seizures have slowed dramatically, both in frequency and severity. He was even able to walk 1.7 miles at the Hope Choice Walk for Life on Saturday, which is remarkable. We're all feeling a bit more stable. Praise God.

The long version:

Our boy continues to inspire us daily. Things are hard for him. Talking. Walking. Eating. Writing. Reading. But, he continues to make one thing look easy...even though we know it is not: smiling. Smiling abounds. Hugs abound. That is not to say that he doesn't get frustrated. He most certainly does. There have been tears of frustration and embarrassment. It's just that he handles frustration (and bounces back from it) better than, well, most of humanity.

Medically speaking, not a whole lot has changed. We continue to work with his medical team to chart a path forward. The extreme rarity of his condition makes this challenging. Not many changes have been made to his medications (other than increasing dosage to match his weight gain). Additionally, he continues to make slow progress in various therapies, most of which are now done at home.

He's had over a hundred seizures this year. That, of course, is awful. However, he continues to come out of his seizures (usually without the help of emergency medication). Also, thus far he hasn't shown signs of cognitive decline.

I'd love to say that our days are easy, but that would be a lie. We are tired. We haven't slept through the night in well over a year. We still wake up to every toss, turn, and irregular breath coming from the bed beside ours. It doesn't get easier to watch your son battle a seizure. Each day is hard. But, each day is a gift. We've been gifted another year of smiles and hugs and unmitigated joy. For that, we are eternally grateful.

All that to say this: thank you for praying. I never say that lightly.

One more story.

Some friends of ours recently arranged a night of blessing for one of their daughters. We were honored to attend and pray with some friends who have become like family. I'm not usually one of those "God has given me a word for you" type of people; but I prayed for something encouraging to say. I thought to myself, "Perhaps there's something in our church lesson this week that is meant for her." So, I looked up where we were to be. It was the story of Ehud in the book of Judges: the left-handed Benjamite who stabbed a fat guy. My first thought: "Nope. I'm definitely not one of those 'God has given me a word for you' type of people."

Then, I studied it a bit more. Did you know that the Young's Literal translation of "left-handed" in Judges 3:15 is "shut of the right hand?" I didn't. But, that was interesting to me...especially since the name "Benjamin" literally means "son of the right." That would mean that describing Ehud as a "left-handed Benjamite" is akin to describing him as a "shut of the right hand, son of the right." Well, that's oxymoronic. To me, the meaning was immediately clear. Here you have a guy who, be it by disability or something else, was a lefty in a right-handed world. And, that's who God chose to use to bring 80 years of peace to his people. In fact, God used the very thing that made him a bit of a misfit--his left-handedness. That's an encouraging message for our friends' daughter who often feels like a lefty in a right-handed world. Thanks, God.

Why do I tell you that story? Well, I am confident that God led me to that little detail because he wanted to use that story to encourage our friends and their daughter; but there was more to the story. I didn't realize that there was more to the story until I glanced over and looked at Isaiah. That's when I noticed a of those details that you grow so accustomed to that you no longer notice it. Due to a loss of fine motor skills, Isaiah often holds one or both hands as you see in the photo: shut.

I needed that reminder. In the midst of the messiness of life, it is incredibly comforting to know that our son is exactly the kind of person who God uses to bring peace to people. If you've ever felt like you or your kids are lefties in a right-handed world, perhaps you need that reminder, too.

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