Journal

Journal entry by Careese Wood

ONE YEAR, BABY! Today we celebrate the one year anniversary of Isaiah walking out of the hospital! It was a day of joy and reminiscing and thankfulness. We ate as a family celebrating our Superman. We prayed together. We toasted to Isaiah with flavored sparkling water. Then we played games and laughed until he had to go to bed. It was amazing. I am so thankful for the life we were given.

This week was our first week back in physical therapy in quite some time. His therapist said that she can see so much continual improvement even with the break in therapy that we can assess whether we want to just keep living life how we are and let that be his "therapy". That is a great conversation to get to have. 

For reference, here are some one year ago vs. now comparisons:
Aug 2019: walking about 10 feet with full reliance on a walker and a wheel chair the rest of the time
Aug 2020: walked about 4 miles a day on our trip without using a wheel chair at all. Also did P90X3 modified version for the full 30 minutes.

Aug 2019: struggled to feed himself both with hand coordination and chewing ability
Aug 2020: hold his fork oddly but has no issues eating ALL DAY LONG 

Aug 2019: weighed 58 lbs
Aug 2020: weighs 69 lbs

Aug 2019: needs at least one nap a day and 13-14 hours of sleep a night
Aug 2020: sleeps 8:30pm-7:30am every day. No naps needed except in rare instances.

It has been a pretty amazing year for that kid. We pray for continued healing of his brain and muscles, for continued strength, and for seizures to end forever. But today I can honestly say that I am so happy and thankful for our life that if God never changes anything, we are going to be ok. What a miracle to be able to say that.
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Journal entry by Josh Wood

I'm sorry for the lack of updates. We've been busy living. You just never know how much living you're going to get to do these days. I'll try to post a more thorough update soon. For now...


The deck was stacked against this day. To say that this day was not supposed to happen is not an understatement. No, this day should not be happening. Not according to diagnosis. Not according to prognosis. Even as we joyfully walked out of the hospital last August, we knew that we (and you) were praying into the face of overwhelming odds. Those odds told us that we were destined to spend every moment of every day and night on edge until Isaiah’s next major seizure came—at which point we would likely begin a repeat of our induced-coma nightmare…and it would likely end in loss rather than relief.


But, God was gracious to us. Isaiah survived his first major post-hospital seizure. He came out of it just as strong and smiley as before. As expected, the seizures continued coming (over the course of 2020, he's come out of over 60 seizures), and Isaiah continues to power through them on the wings of prayer and his unshakably positive attitude. We simply could not be more proud of him.


All that to say this…


Today is Isaiah’s birthday. Our wonderful warrior of a boy turned 13 years old today. He wasn't supposed to survive to 12, and yet we were given 13. Grateful doesn't begin to describe it. We aren't deserving of this boy, his smile, his strength, his joy, or his attitude. But, God has given us 13 years with him. We praise God for that.

Journal entry by Careese Wood

One year.
One year since everything in our world was thrown on its head with one single phone call. One year since I learned the meaning of total dependence. One year since we went through a day without ALL the thoughts. One year of knowing how little control we have in life. One year of constant change and adaptation. One year of knowing God in a whole new way. And one year of life in a boy we had no guarantee we would bring home.

We were told that within a year of the onset of super refractory seizures the other kids with Isaiah's condition either passed away or were no longer themselves do to the damage suffered from seizing. One year and Isaiah, both mentally and physically, is still here. 

I have so many thoughts and feelings and it is hard to know what to share and what to keep to myself. 

Update first: Since the last post, the seizures have lessened and Isaiah has slept well. One large seizure. Only few small ones. His strength continues to increase. While the quarantine has stopped many things, his improvement isn't one of them. In fact, it has helped him tremendously to have extra time to run and play outside. So much free therapy. He helped shovel, haul, and unload soil for our garden beds. He helped unload a trailer load of boards. He rides his bike and walks around the neighborhood. He carries his laundry to the washer and then back to the bedroom. He does his school work and practices piano. Not one of those things could or would or should be happening--But God. 

Anyone who knew Isaiah prior to last May knows that the fear of being in front of people was debilitating. He would simply freeze. Once when he was about 4, he spent an entire quarter of a soccer game frozen on the mark where his coach had physically placed him when he wouldn't walk onto the field. The ball literally rolled and sat on his foot and Isaiah refused to move a muscle. Another kid kicked the ball off of his foot and Isaiah never even flinched. At the end of the quarter, the coach carried him back off of the field. Isaiah hung up his cleats after that grand finale. After being in the hospital, Isaiah has been more bold than ever in his life. He went to speak to a women's small group to tell them "God healed me". He chose a picture of him in ICU full of tubes and wires and made it into a poster. On the other side he had me write the words "God saved my life". He proudly held his poster in the God of Miracles Christmas program in which the kids made posters to tell of the wonders God had done in their lives. He spoke in front of his class to tell them about God's mercy. He struggles with getting words out, he stutters and stumbles, and is still very nervous to be in front of people, but he is willing and that is huge. In one year I have seen my little mime become an ambassador for Jesus. 

I have also seen how each of my other children's lives have changed. Faith and Addie are no longer children when it comes to the naivete of feeling invincible. They understand so well the fragile nature of life and the lack of control we have in it. All of the kids have learned how to walk through everyday not knowing what it holds. They have learned to plow through anxiety, fear, loneliness, broken heartedness, joy, healing, and how to adapt to all that comes with each of those things. They have learned a deep empathy for people who are hurting and have developed the coping mechanism of serving others to work through their own emotions. Some days are hard. Some days are miserable. Some days we give up by noon and just try to survive until bedtime. Some days are full of the most immeasurable joy. What's really amazing is that whatever the day looks like, we get to do it as a whole family and for that we are all eternally grateful. One year ago I didn't know if that would be possible. I watched as the doctors and nurses fought to keep our son alive more that once in that hospital. I watched as God breathed life back into him. And I watched as God slowly restored Isaiah, Josh, the other kids, and me one day at a time, not into what we were, but into what He wanted us to be today. I saw this post by Dan Bouchelle and feel that it perfectly captures where we are. "I am ok, but I am not at my best. I am often confused and uncertain. I have a lot of brain fog. I am too afraid to let myself face my fears about what is coming. I trust God, but I don't assume that means that I or those I love will be protected from great loss of suffering. We are not special. The way of the cross is not a 'victory march' but  a 'broken hallelujah'. Like Jacob, we walk with a limp because the God we trust wounds us in the battle of wills. He values something more than our comfort. Yet, I trust his ultimate goodness and mercy for life beyond whatever comes next. So I get up and go through my day with a cautious confidence and try to make my life matter to bless others. That is what faith means for me."

One year. I can't even wrap my mind around the significance of that. But God.

Journal entry by Josh Wood

Hello friends,

Here's the latest, good news first:

Despite the obvious awfulness inherent in the great quarantine, we've been incredibly encouraged by all the signs of life. Neighborhoods, sidewalks, lawns, and Facebook feeds are littered with the debris of lots and lots of family time. None of us wanted a quarantine, but I think parts of our lives needed it. I know ours did. There's been board games, sing-a-longs, dance parties, music videos, bike rides, walks, movie nights, movie-making, letter-writing, and art-creating. Two nights ago, we used Zoom to play Family Feud with some beloved cousins in Tennessee. All that to say this: Isaiah has absolutely loved this quarantine. We've cherished it, too. I can't help but believe that a lot of good will come out of this mess--for our family and many others.

As for where we're at medically...

Since my last update, April has continued to be a difficult month. Isaiah has been shakier than normal during the days, and his nights have continued to be challenging. He continues to work hard during his therapies (done via Zoom) and has a great attitude, but he has needed to stop early a couple of times due to severe twitching.

For a little big-picture perspective, here are the number of seizures Isaiah has had this year. (We track the number, time of day, duration, severity, meds used, etc. We only track the larger seizures. We don't track severe twitching or seizures that last less than 15 seconds. This data helps the doctors manage the game plan moving forward.)

January: 4
February: 10
March: 7
April: 11 (as of today)

As you can tell, after improving in March, things have escalated this month. During the fall, he battled an illness which triggered a difficult month similar to this. This time, there is no trigger that we are aware of. Thankfully, Isaiah's attitude has continued to be nothing short of amazing. There hasn't been a single morning when he hasn't woken up, made eye contact, and smiled a great big "good morning" smile. After that, we get at least 1,000 more smiles per day no matter how hard or how bad the day. That makes all of this much, much easier.

Here are our specific prayer requests other than the obvious:

  • At risk of sounding like a broken record...we are tired, exhausted really. All 10 of us. Please pray for energy for us all. Don't get me wrong. We still often feel the reality of Isaiah 40:29. After particularly horrendous nights with little to no sleep, we've been blessed many times with the energy to sing or dance or laugh or hide-and-seek or bounce a little too high on the trampoline. There are many moments when we continue to say "but God", because there's simply no other explanation. But, there are many other moments where we're less "But God!" and more "caffeine + ice cream + grumbling/complaining + caffeine + Tylenol + caffeine + But...God? Hello? Is this thing on? Help please?"
  • Please continue to be praying for wisdom for Careese and I as we try to balance all of this. We continue to be faced with a constant barrage of difficult decisions--from diet to therapies to medications to work schedules to parenting in general. Sometimes, we have to make decisions quickly in the midst of very high-stress situations. Other times, we have to make big-picture decisions that will affect the whole family; and, we agonize over them for days. We very much want to make the right decisions for Isaiah and for our family as a whole. We need more wisdom.
Thank you for your prayers. They continue to mean more to us than you know.

Journal entry by Josh Wood

Hello friends,

I wanted to keep everyone in the loop. I'll lead with this: the last 24 hours have been good. Isaiah slept for 14 hours Sunday night, had a really good day Monday, and slept well again last night. So, things are looking much better at the moment.

Unfortunately, that followed the toughest time we've had since leaving the hospital.

Isaiah woke up Friday morning with a small seizure that lasted just under 30 seconds. He came out of it on his own without the use of emergency meds. (I should note that short seizures like this aren't terribly uncommon when he wakes up in the mornings.) After an hour of increasingly strong twitching, we went ahead and gave him his emergency med to calm him down. While he is usually a little weak and twitchy in the mornings, it is very rare that it intensifies to the point of needing more medication. Fortunately, his energy level increased after a few hours; and, he felt much better. He remained a little weaker than normal for parts of the day, but otherwise had a good day and even joined us as we used some quarantine time to make ridiculous boy band music videos. Don't judge us.

On Saturday morning, he again woke up with a short seizure. He again came out of it on his own, and we were able to avoid using his emergency medication. We noticed that he was weaker and more twitchy than normal, so we had him rest in bed for several hours. This, again, isn't terribly uncommon. He usually recovers well after some rest. And, he seemed to be feeling better by evening. We put him to bed at his normal bedtime.

After a few hours of sleep, he had his first strong, full-body seizure at 1am. It lasted about two minutes, and we had to use his emergency medication to stop it. Fortunately, the medication did its job. After about fifteen minutes, he fell back asleep. We were a little more worried than usual, because his seizures usually come closer to 3am or between 5am and 8am. This was quite a bit earlier than we were used to and fairly strong, comparatively speaking.

He began seizing again at 3:30am. This seizure was even more severe than the first, and we used his second line of emergency medication. This seizure lasted between 2 and 3 minutes (which may not sound very long, but feels like a lifetime in the moment), and he continued twitching for over half an hour afterward.

For context, here’s the basic gist of Isaiah's emergency medication procedure: Isaiah's condition is a super rare genetic mutation that causes so-called "super refractory" seizures. In other words, once his seizures start, it can be very hard to stop them. He takes a cocktail of seizure medications twice per day every day to keep the seizures at bay. Additionally, he was prescribed three lines of emergency medications to be administered if he has a prolonged seizure that intensifies and shows no signs of stopping on its own. So, this has been our process: we administer the first line of emergency medication when he has a strong seizure. We follow that with his second line if the seizing doesn’t stop or if another seizure begins soon after. If his seizure persists after the second line of medication is administered, or if he has another seizure soon after, we escalate to the third line. The first two lines of medication are tablets that dissolve in his cheek. The third is a very high dose of phenobarbital. We can only use these three lines of defense once in a 24-hour period. If they don't stop the seizures, Isaiah will be put back into a coma as soon as possible and flown to neuro ICU at Cook Children's. Once there, we will likely undergo brain surgery. That's our next step in this process. By the grace of God, we'd only ever had to use 2 of his 3 lines of emergency medications since leaving the hospital. That changed Sunday morning.

Isaiah began seizing again a couple hours later at 6am. Knowing we only had one line of medication left before the ICU, we knelt beside our seizing son as we always do and kept him on his side to keep him from aspirating...this time watching our watches, crying, and praying a little more fervently than usual for it to stop. After a very long 30 seconds, he came out of it; but he quickly began severely twitching soon after that. As his twitching intensified over the next 15 minutes, it became obvious that another large seizure was coming. So, we made the tough decision to give him his third line of emergency medication. Then, we prayed. If the seizures didn’t stop coming, we were out of options and would be headed back to the ICU. Of course, there is never a good time to be in the ICU; but, for obvious reasons, this would be a worse time than usual. (One thought that is constantly on our minds these days: during our last ICU stay, Isaiah needed a ventilator for 37 days to survive.)

After a very nervous hour, Isaiah's twitching slowly began to subside. He was very weak in the morning but slowly gained energy throughout the day. We put him to bed a little earlier than normal. Then, we prayed.

He slept. And, so did we. 14 hours later, he woke up (photo attached). Children are quite the gift from God…especially their smiles.

So, that’s where we’re at. Every day is an adventure. Every day brings with it challenges. But, each day also brings with it healthy doses of joy (that is, when we choose to accept it)…even the scary days…even the quarantined days. So, we press on, trying to improve our Romans 12:12 batting average and praying for humanity to do the same in the midst of this pandemic mess. (Full disclosure: I’m batting .333 today for Romans 12:12. Hopefully, you’re doing better.)

Please keep the prayers coming, and let us know if we can pray for you in any way. We’d be honored. You are a blessing.

Journal entry by Josh Wood

It's been awhile since my last update. Since then, well, the entire world has changed. What a mess. I imagine many of you are feeling the same way we are...like we're awkwardly stumbling through the pages of future history books. Some days we overreact to reality and make mistakes. Other days we under-react to reality and make mistakes. Most days we're trying to teach our kids to put their hope in things eternal rather than things temporal...and fighting a battle to teach ourselves the same. Surreal. That said, you all have been so wonderful to pray for us for almost a year now. With all that is going on, we would be honored to return the favor. Let us know if you have any specific prayer requests and we will pray over them as a family.

Home Update

As for Isaiah and our family, that amazing boy of ours is still very much a walking miracle. Prior to this week, we made it almost a month between seizures--the longest seizure-free span that I can remember. What a gift. Additionally, even though his seizures still require emergency medication, he is still coming out of them (and that is very much a miracle). Also, he seems to be coming out of his seizures a little faster and a little stronger than he was in January or February. This is all very encouraging. Thank you for continuing to pray. God continues to walk with our family.

Doctor Update

At the beginning of March, we made the trek to Fort Worth to meet with Isaiah's geneticist. A few additional tests confirmed much of what we already knew about his diagnosis. It is a very, very rare condition. Also, while it is a genetic mutation, it appears to be a new mutation in Isaiah and not something inherited from Careese and me (i.e. none of our other children have it, which is really good news.) Additionally, Isaiah does have another genetic abnormality that was inherited from me. I asked if that meant Isaiah was destined to a life of rugged good looks and intellectual prowess. Apparently, it does not. Anyhow, we didn't really learn much that we didn't already know. But, we were reminded of just how miraculous his progress has been. Bottom line: he shouldn't be alive, let alone walking, talking, learning, and progressing. Yet, here we are. Thankful.

Therapy Update

As you might imagine, we've been under a fairly strict quarantine around here. So, Isaiah has been working on his various therapy routines at home. While the progress is still very gradual, we are still seeing progress; and, that makes us smile. Worth noting: we have a newfound appreciation for those of you out there who also have immunocompromised loved ones. Times like this are nerve-racking and full of difficult decisions. Again, let us know if we can pray for you.

Make-A-Wish Update

Isaiah's geneticist mentioned that she was helping move along the process, which is wonderful. Other than that, we don't have any other updates yet. All this COVID-19 stuff has understandably delayed the process.

Thank you.

All in all, the Wood family is doing well. We're trying to make the most of our quarantine time and trying to follow the advice of Philippians 4:8. We have much to be thankful for. Thanks for joining us on this journey. Thank you for praying.

A couple other items of note:

1) I recently typed up a few thoughts on grief, suffering, and joy....specifically, what we've learned about those things through all of this. Here are those thoughts: http://www.joshwoodtx.com/grief-and-suffering/

2) I’ve talked a lot about how thankful we are for Cook Children's Hospital. I don’t know that they could have taken better care of our family this past year. In addition to working tirelessly to save our son’s life, their Child Life team provided near-constant opportunities for distraction for our other kids. They were nothing short of amazing. The video attached is one such distraction—a little movie produced by the wonderful people of Cook Children’s Child Life Zone (written and performed by our kids). Enjoy.

3) I attached a few photos of a family trip we took to San Antonio just before COVID-19 changed the world.

Journal entry by Josh Wood

Here’s the shortest update yet: last night marked 8 nights in a row without a major seizure. Also, Isaiah has been a little stronger during the days. He’s not quite as strong as in the past, but he’s much improved from a week ago. Thank you for praying. As you probably caught on, we’ve been very nervous.
 
I’ve attached two delightful photos. One photo gives you a peak at the gift of pure and smiley joy the good Lord gives us before bed each night. I can’t describe how thankful we are for these nightly gifts.
 
The other photo was taken a couple hours ago—immediately after one of us rolled two Yahtzees in a game. I’ll let you guess which one.
 
Tonight, we’re thankful. For Jesus and grace and smiley hugs and sleep and Yahtzee and each of you.
 
God bless.

Journal entry by Josh Wood

Hello friends. I wanted to keep all of you prayer warriors in the loop. It's been a tough couple of weeks. I would have updated sooner, but time has not been a luxury we've had. First, the good news: as of today, things appear to be on an upswing. We've had three seizure-free nights in a row; and, Isaiah has been more stable the past three days than he has been in a couple weeks. Also, a chest x-ray Tuesday revealed clear lungs. Lord willing, we're back on the road to recovery.

As for the happenings since my last update...

From Christmas until the first of February, Isaiah had approximately one fairly strong seizure per week. Thankfully, he rebounded fairly quickly from each of these episodes. Then, starting 2/10, he caught an illness of some sort. This caused his seizures to escalate from one per week to at least one per night for a week. With the exception of once or twice, these seizures have been longer and more severe than his previous seizures. And, he has not rebounded as quickly. Sometimes, he remains completely paralyzed for quite awhile afterward. Other times, he is able to speak softly but unable to move. After he becomes stable again, it almost always takes both Careese and I to get him to the bathroom, changed, and back to bed. Then, we anxiously watch as his twitching slowly fades into sleep. Despite our best efforts, the severity of the seizures has caused him to aspirate some. This has led to breathing issues on top of general weakness the following day. By the grace of God, he is still coming out of his seizures; but it is taking longer, and he is not coming out of them as easily.

It will not surprise you to know that, despite the rough nights, Isaiah still wakes up with a giant smile every morning at 7:30am. "Hi Momma! Hi Daddy!" Those smiles breathe life into us every single morning. The prior night's seizures have really been draining his energy though. Each day following a night seizure, he is pretty weak, fairly twitchy, and loses the ability to walk at least a couple times. It's certainly the weakest we've seen him since we left the hospital. He remains his remarkably happy and smiley self, just far less active with an occasionally strong headache. Again, the past three days have blessedly been better days.

Anyhow, we're scheduled to see his main neurologist in a couple weeks. We've been in regular contact with his pediatrician and pulmonologist. Of course, if he regresses, we will speed up his neurologist appointment...although we have been told that there isn't really much more they can do. They don't believe that higher doses of his existing medications will help. But, they didn't expect him to survive this long or for his rescue meds to continue working. Yet, here we are.

As for what to pray for in addition to the obvious...

Frankly, the week of seizures felt very much like caring for a terminally ill patient. We've gone from facing our worst fear at 3am to absolute elation at seeing a coherent smile at 7:30am to dealing with mundane normalcies of life (generally with a far less cheery attitude than our remarkable boy) at 9am to anxiously arriving at bed time...which basically entails laying still in bed, staring wide-eyed at the ceiling, and listening to the rhythms of Isaiah's breaths in the bed next to ours, praying to survive another night. For the record, despite the prognosis as such, we don't believe that we are dealing with a terminally ill patient. We believe this to be a bump in the road that was initially caused by an immune system response to illness. Regardless, it's really messing with our emotions...hence my whininess. Sorry. Well, not too sorry. I've read the Psalms. David was way whinier than this at times. Thanks, David. I feel better.

Anyhow, we appreciate your prayers. We're still watching God move large and sometimes seemingly stagnant mountains. And, knowing that there is still an army out there praying for us gives us a lot of joy...kind of like our boy's smiles do. So, thank you for walking and praying through this with us. You are a blessing. Yes, you. Thank you.

Oh, and here's a recent photo of a boy dancing with his beautiful momma...a boy who, despite recent setbacks, continues to defy expectations. Isn't that just the best?

Journal entry by Josh Wood

Brace yourself for another lengthy post. Sorry. Let's start with where we're at health-wise:
 
Isaiah continues to gradually improve in therapy. He still struggles a bit with finding the right words and/or getting the right words out when speaking; but, his speech is gradually improving...which is wonderful. We can tell that his endurance continues to increase, and his steps are getting steadier. This past week, he walked an entire quarter of a mile on our treadmill! Also, he has started swimming some during his therapy; and, he loves it.
 
I don't know that we've discussed it before, but it is worth noting the significance of Isaiah's continued progress. Toward the end of our hospital stay, our doctors and therapists prepared us for a so-called "plateau." Due to the severity of Isaiah's brain issues (among other things, the staggeringly long length of time his brain suffered through near-constant seizures), we were warned that his progress would likely "plateau" at some point. In other words, his physical and mental developmental progress would essentially stop; and, after that, there would be minimal progress for the rest of his life. Another patient who shared his super rare genetic abnormality (in one of the case studies we read) "plateau-ed" with the mental capacity of a toddler for the rest of his significantly shortened life. Another plateau-ed in a permanent vegetative state.
 
So far, Isaiah has not "plateau-ed." This, of course, is a really good sign for his future development. Praise God.
 
As Isaiah continues to improve, our biggest challenge continues to be the night time. If/when Isaiah wakes up from a deep sleep, he almost always goes into a seizure--usually small and focal, but sometimes large and widespread. The small, focal twitching happens pretty much every night (and first thing in the morning when he wakes up). The larger, scarier seizures have happened a few times since Christmas...usually due to congestion or a cough waking him up. Thankfully, we've been able to catch the seizures very quickly so far (Isaiah sleeps in a twin bed in our room, next to our bed); and, the emergency medication continues to work effectively to stop his seizures and put him back to sleep. But, all this makes for a very tense half an hour or so. We're all a bit sleep-deprived.
 
As for weaning medications: the plan is still to wean him off of at least one of his several seizure medications. At the moment though, he is still fighting congestion and a cough, so we've delayed weaning him off of any of his medications until that clears up. It's just too risky.

Overall though, we are all gradually improving and thankful for the baby steps we are able to continue to take.
 
Now, for yet another story of God's provision for our family...
 
For a variety of reasons, I've refrained from talking about the financial issues resulting from all of this. Until now. I want you to hear what is happening, because God deserves for you to hear what is happening.
 
Many of you wonderful people have asked if we have a Go Fund Me page or some similar way to donate money to help us out with our ongoing costs. We do not. We have been so very blessed. However, I do have a way you can help us out if you feel so inclined. I'll put that information at the very end of this post though, because I want you to hear our financial story first.
 
It will likely not surprise you to know that, not including ongoing medications and therapies, our medical bills are currently a good bit north of $2 million.
 
Confession: I've complained for years about "donating" money to an insurance company, griping that I received very little in return for my generous monthly donations. Not any more. There's still some negotiation going on; but so far, our insurance provider has been fantastic. They're holding up their end of the deal and have already paid the vast majority of the bills. That is, of course, an incredible blessing. Praise God for insurance. I mean, if we'd had to spend the rest of our lives paying off medical bills, we would have gratefully done it. Those medical bills represent the priceless life of our boy. But, I'm very, very thankful that isn't the case.
 
If you've followed the miraculous journey of Isaiah, you will not be surprised to know that there's more to the financial side of our story.
 
A few months before Isaiah entered the hospital, I signed up for a supplemental insurance policy for our family. I added a rider to that policy that covered a variety of rare and fairly rare medical conditions. A month or so after we were out of the hospital and back in Amarillo, I was filing some paperwork and came across an informational page for the rider. This page listed all of the covered medical conditions. One medical condition on the list jumped out at me. Encephalitis. Encephalitis, if I remembered correctly, was among Isaiah's first (if not the first) diagnosed issues. So, I filed a claim.
 
Fast forward. We just received a check in the mail for that claim. That one, singular check should pay off all of our remaining out-of-pocket medical bills from our entire 3-month stay in the hospital plus about one year's worth of our out-of-pocket costs for medications and therapies. Yes, you read that correctly. ALL of our remaining medical bills AND a year of Isaiah's medications and therapies. You can tell me that was not a God thing. But, you'd be wrong. But God.
 
For all of you wonderful people who continue to ask how you can help us financially: we're good...miraculously good. Additionally, I assure you that you've already done enough. So many of you have brought food, helped with housing during our time in Fort Worth, sent gift cards, loved on and taken care of our kids and parents, and much, much more. We are forever grateful for all of those things...and especially for the time you've poured into prayer on our family's behalf.
 
All that said, please direct your generosity to another family or worthy cause. If you'd like to give to a cause in Isaiah's honor, consider giving to one of our favorite organizations, Christian Relief Fund. On that note, as you may or may not be aware, I recently wrote and published a book (more about the book here: https://strugglebusbook.com/). We are donating all pre-order proceeds to Christian Relief Fund. So, if you feel so inclined to support us and CRF by purchasing a ridiculous book about our family's crazy adventures in our ridiculous van, pre-order my book sometime between now and February 6 (2/6 is the official release date) here: https://www.amazon.com/Struggle-Bus-Van-Myth-Legend/dp/1632963922. We'll send the money on to CRF. I should note that the book does not contain the medical journey of our amazing boy. My rough draft was completed before all of this happened. As much as I wanted to add Isaiah's story to the book, I simply didn't have the emotional energy or time to do it.
 
As always, thank you thank you thank you for your continued prayers for and support of our family. Oh, and thank you for the continued flow of comments and well wishes on this here blog. They continue to bless us all. God continues to move in big, deeply humbling ways...and we keep pushing forward.

Journal entry by Josh Wood

***Saturday AM Update: ***

Sorry for the lack of updates. We haven’t had the energy or time. Isaiah remains stable, and our ever-increasing team of doctors continues to search for answers. The plan is to keep him sedated over the weekend to give his brain and body time to rest. Though still leaning toward NMDA encephalitis, a couple tests results have come back that are atypical of autoimmune disease. He had his third round of plasma exchange this morning and, after a day-long break, is back on constant EEG monitoring. We’ve spoken again with rheumatology and neurology docs today and will be consulting with doctors from hematology/oncology later in the day. In short, though we’ve ruled out a litany if potential causes and lean toward something autoimmune, Isaiah’s condition remains a bit of a mystery. Some changes have been made to his meds (including a slight increase in sedation this morning to reduce some twitchiness). Vitals have held stable. Careese and I wait, hold tight to Jesus, and are uplifted by our friends and family. Will try to update more as I can.

***Thursday night from Careese ***

First, I want to say thank you for all of the texts, messages, calls, etc. I don’t have the ability or emotional strength to respond to most of them, but they are so so appreciated. They mean more than I can ever put into words. 
I don’t exactly know where to begin to tell where things are right now. Isaiah’s doctors have nearly ruled out bacteria or infection from being the root of the seizures. They are now leaning towards an autoimmune condition in which his body is trying to attack and kill his brain. 
My other kids made it to Fort Worth and for the first time in a week, I got to put them to bed. In that process, I felt the fullness of my lack of control. I can’t protect my babies. My full time God-given job, and I can’t do it. I can’t protect Isaiah from something we can’t see or identify. I can’t protect Matthew and Levi from the loss and pain of their best friend not being there to play. I can’t protect any of the seven who aren’t lying in a hospital bed fighting for their lives from the fear and the pain that fills every minute. I don’t have answers for the questions they so desperately need answered. I don’t know when Isaiah will wake up, or go home. I don’t know if he will be ok or if he will be the same. I don’t know why the seizures won’t stop. And the brilliant doctors and nurses who are working tirelessly to take care of him don’t know either. 
I only know one thing right now. God is still God despite my circumstances. He is still in control. And no matter how this story ends, I will still love him because he is still worthy. And I guess for now, that will have to be enough.

***4:45pm Thursday Update: ***

It’s been an absolute whirlwind here. Today, we’ve met with doctors from pediatric ICU, neurology, rheumatology, and nephrology, as well as the Nurse Practitioner from the Infectious Disease team.

Where we’re at now: Isaiah remains stable. We don’t have a definitive diagnosis, but plasma exchange treatment for presumed NMDA encephalitis will begin today. Plasma exchange will last at least 5 days. Another spinal tap has been completed. (One was completed in Amarillo as well. We likely won’t have results from the recent spinal tap for a couple weeks.) His line for the treatment is in place.

To answer a question that several have asked: (Sorry, all of this has been almost impossible to digest, let alone communicate clearly.)

His pupils are reactive, but he has remained unconscious since being admitted to pediatric ICU last Saturday (5/4).

Will try to keep everyone posted. I may try to move updates to a blog post at some point. For now, this is easiest. We continue to lean on Psalm 29:11 today. Thank you for your continued prayers and outpouring of support.

***11:15pm Wednesday Update: ***

We made it to Cook Children’s earlier this evening. Isaiah is stable and settled into his room here. They are still in the process of doing extensive evaluations and connecting him to a continuous EEG. He has a few ancillary issues they’re working on now. Again, we wait.

I don’t have the emotional capacity to type the appropriate words to thank the BSA pediatric ICU team or our family or our friends right now. Just know that Careese and I are forever grateful. We continue to pray.

***1:20pm Wednesday Update: ***

This morning, we attempted to cease his sedative medication. (This would allow us to begin the slow process of removing him from the ventilator, feeding tube, and, ultimately, trying to ween him off the litany of medications that are currently supporting him.)

Unfortunately, he began seizing again. Thankfully, the seizures were very mild, quickly controlled, and his vitals stabilized. Our doctor immediately made the decision to fly him to Cook Childrens in DFW. Currently, he remains sedated but stable and will fly out as soon as weather allows. He is now on an additional antibiotic for some lung issues. Pray that the weather clears soon.

***11pm Tuesday Update: ***

It’s been another busy day. A lot happened today, but I’ll try to hit the important things. Short version: currently, he is still stable. Our sweet boy is quite the fighter. Oxygen levels are still holding. Blood pressure is holding. Fever, which he fought a little bit today, is gone. We were originally hoping to try stopping his sedative today, but that has been postponed for now for reasons I’ll explain below.

He developed a sinus infection not long after my last update. Combined with the previous reduction in sedative medication, the infection made it a challenge for him to keep up his oxygen levels. He was put back on a bit of oxygen support and will remain on it for at least tonight. We were told that this isn’t surprising given the severity of his condition over the last few days.

Also around mid-day today, we noticed a small facial twitch. Thankfully, it didn’t last long, but it called for another EEG to check for seizure activity. That was quickly scheduled and completed, but we don’t yet know the results.

Due to the sinus infection (and pending EEG results), we are postponing the ceasing of sedation meds for now.

Overall, our doctor is describing today’s events as “a pause, not a step back.” His vitals are still good. For now, we await the EEG results and see how he does tonight. He is still very critical and his medical team still requests no visitors at this time.

Again, Careese and I can’t thank you all enough for your outpouring of support, comments, messages, and prayers. Jesus and you are carrying us through.

***Noon Tuesday Update: ***

Vitals held stable through the night. They have reduced his sedative and may try to cease it entirely later today. After that, the plan is to see how he handles waking up. MRI results came back clean (no evidence of brain bleeds or swelling). He was finally stable enough last night to begin nutrition through a feeding tube. He has been handling that well. They did need to put a catheter in again today, but urine output has been better after that. They are still watching his kidneys. He is back on some oxygen to help him as he comes off of the sedative. Blood pressure remains stable. He does have a little bit of a fever, but they are monitoring closely.

Of course, we are feeling much much better now than at this time yesterday. However, now that the sedative-weening process has started, we are beginning to understand the gravity of what lies ahead over the next couple of days. Frankly, it’s a violent and terrifying process. He’s still in very critical condition (doctors still recommend against visitation). The weather situation in Amarillo is not helping our nerves. Again, thank you for your prayers. They are felt.

*** 11pm Monday Update: ***

It has been a busy evening. We spoke with the doctor a few hours ago. Better news tonight. The EEG we did today came back clean. The seizures have stopped. Additionally, his blood pressure has finally stabilized. They’ve begun weening him off of a couple life-supporting mechanisms to see how he handles it. So far, he has tolerated the removal of the epinephrine as well as setting the ventilator to CPAP mode (where he is more-or-less breathing on his own). His sedative dosage has also been decreased. His vitals all remain stable. We’re crying and very hopeful, but know he has a long road ahead. We hope to receive MRI results back sometime tonight. Depending on how he does tonight, they may attempt to ween him off of another med or two tomorrow or Wednesday. He’s still in very critical condition (and doctors/staff are still recommending against visitation), but the news is immensely better than it was this morning. Please continue to pray. You are clearly making quite a lot of noise on earth and in Heaven. It is blessing us in every conceivable way.

****4pm Monday update below****

He’s still in critical condition. While he remains sedated, intubated, and on a ventilator, his vital signs have showed some signs of improvement this afternoon. His oxygen levels are better as is his body temperature. His blood pressure has remained a bit of a challenge, but epinephrine has helped stabilize it. Kidney function also seems to be improving.

Our small army of doctors, nurses, therapists, etc. continue to take amazing care of us. We are so very grateful for each of them...and the rest of you medical professionals who somehow muster the strength to do this every day.

We don’t need anything at this time, and his condition still does not allow for visitors (they are very worried about overstimulating him). As you might imagine, we are exhausted in every way. Please continue to pray. We are so thankful for all of you.

****
Original Post:

A quick update for those asking about Isaiah:

Isaiah had a number severe seizures early Saturday morning. He was taken by ambulance to pediatric ICU, where they have been attempting both to determine the cause and to control the seizures since he arrived. Though they aren’t sure what role it played (is playing) in his seizures, he was diagnosed with pneumonia. They are treating that as well. He has been on a ventilator, intubated, and heavily sedated since that time.

As of now, Isaiah is still in critical condition. The EEG Sunday showed improvement in seizure activity from Saturday, which means that his constant seizures have thankfully subsided in intensity and regularity (though they are still pretty frequent). He is breathing some on his own. His oxygen levels and heart rates improved Sunday over Saturday. Unfortunately, as of this morning, his blood pressure and oxygen levels have been decreasing.

His pediatric neurologist at Cook Children’s in Fort Worth has been in the loop at every step and concurs with everything that is being done here in Amarillo. Another EEG will be done today. If his seizure activity shows signs of increasing again, we may need to head to DFW. If the seizures slow and/or stop, we will start considering when and how to ween him off of sedatives and medication. We will be staying in Amarillo for the time being. We should know a little more after the EEG. Our doctors and nurses have all been wonderful.

Things to be praying for at the moment:

Of course, please continue to pray for the seizures to end. Additionally, here are the other issues at the moment:
His kidney function is still struggling a bit.
His blood pressure is still low.
His pneumonia has worsened some since we arrived (though I think this was expected).
Please pray for all of our kids. As you might imagine, they are struggling with all of this. Thankfully, our wonderful parents are taking care of them.

For everyone who has asked, we don’t need anything at this time, and his critical status doesn’t allow for visitors. We just want your prayers. They (and you) are such a blessing to us.

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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.

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