ER’s and EEG’s

SP19 Stanford EEG Pic
So proud of you, Grace! Always keeping a great attitude no matter what.

 

On January 24 something very unexpected happened. For the past year or so Grace’s seizures have looked the same: light trigger, left hand comes up, body freezes, then the seizure releases after a few (or more) minutes. However, last Thursday morning while I was at work Grace had a “normal” seizure which then abruptly morphed into something we hadn’t seen before. Her whole body went limp and she struggled to breathe. Paramedics rushed her to the ER where, after several tests, doctors concluded that she had had some sort of rare but not-to-be-unexpected brain flare up. Monitors showed that although outwardly Grace looked like she was struggling to breathe, her brain was still receiving enough oxygen in between gasps. They told us we shouldn’t worry, and she was released later that day.

Last Saturday morning Grace had another of her “new” seizures, but having been reassured by doctors two days before, we kept her at home and she rested afterward. Later that night, however, another seizure came, and this time Grace  looked like she was struggling for air even more than before. We called 911 for the second time in three days, and the paramedics once again brought her to the Kaiser Santa Teresa ER near our apartment. It was around 7pm.

Eventually doctors decided that Grace should be transferred for an inpatient EEG monitoring, but since Kaiser Redwood City was full, she was transferred to Stanford Medical Center instead. The ambulance didn’t come to get her until 2:30am, and between the ride over and getting checked in Grace only “slept” from 4-6am that night. By now she had had several more of the new kind of seizure.

The EEG ran throughout Sunday morning, during which time Grace agreed to have a seizure purposefully induced via a doctor shining a light in her eyes. By Sunday afternoon the doctors informed us that the EEG results were inconclusive, and they recommended further outpatient treatment at a Stanford center specializing in neurological disorders.

Grace went home that afternoon and has been at home this past week. We are doing our best to resume our normal daily routines while dealing with the seizures as they come. I have tried to share this update with you all as concisely as possible, with the understanding that as a whole this past week-and-a-half has been unexpected, scary, and tiring.

At this point we are waiting to finalize our referral process to the Stanford center, hoping for little or no exposure to light triggers so that Grace can at least rest and resume her daily routine as safely as possible. Thank you so much for your prayers for us, and we will keep you posted as we learn more! God is faithful and good through it all.

New Directions for a New Year

morro bay pic
Happy New Year! 🙂

 

Ivan: Happy new year everyone! I’d like to give an update on how Grace and I are doing not only medically but also with life in general. We have some exciting career and education updates to share! That being said, I’ll start with the medical side and approach it somewhat systematically, so—please bear with me. 🙂 Physiologically, Grace still faces two main challenges: seizures, and the effects of her traumatic brain injury (TBI). Her seizures are triggered by light, or more specifically, sudden changes in bright light. This encompasses everything from sunlight glinting off of cars, LED headlights and taillights, exposure to LED lights in general, fluorescent lightbulbs around our apartment (which occasionally flicker), as well as unexpected videos or ads on TV, computer, and phone screens. These seizures drain Grace’s energy, and often a bad string of seizures takes days to recover from.

 

Because of her TBI, Grace needs a lot of structure in her daily routine. It is hard for her to face open-ended situations (like life), and unexpected changes to her schedule are hard to process. TBI also limits her energy so that she is only able to work on activities for around 20 minutes at a time before needing to rest. When Grace is particularly fatigued, she may even experience TBI episodes in which, for usually around 10 minutes or so, she regresses to behaving like a five-year-old child having a tantrum. She becomes upset and unable to process what I say until the episode passes, and she returns to her normal self.

 

Needless to say, Grace’s daily life is extremely limited. I feel so sorry for her—at times the imagery of a caged bird comes to mind. I remember how gifted, energetic, active, talented, and vivacious she used to be, and she still possesses all of those characteristics now, but is unable to fully express herself due to her physical limitations. It’s hard to see my 25-year-old wife stuck at home because even walking from our apartment to our car in the parking garage poses a serious seizure threat.

 

Yet her attitude continues to amaze me daily. She knows who she is—a beloved child of God—and she knows where her eternal future lies. She is a fighter who pushes herself beyond what anyone else (including doctors, at times) might recommend, and I believe God has blessed her tremendous efforts so that, despite her limitations, she has been able to accomplish more than many would have predicted.

 

For a number of months now, Grace has been enrolled in an accelerated online B.A. in English degree at Cal Baptist. In the face of huge obstacles, I have seen her persist time and time again, giving her absolute best even when it hurts. God has blessed her efforts to the extent that her professors, who were initially unaware of Grace’s accident and limitations, have highly acclaimed her work. Way to go Grace! Keep giving your best to God and He will take care of the rest.

 

On my part, I have been blessed to continue my own studies as well. I’m currently enrolled in an online EdD in Organizational Leadership at Grand Canyon University. God has been helping both Grace and I manage our responsibilities as best as we can so far, and we will continue to rely on His grace throughout this year and beyond, every step of the way.

 

No one knows what a year may hold, except for the One who knows all things—including human hearts. May we dedicate our lives to pursuing the One who pursued us first, giving Him all the glory and praise because He deserves it all and so much more. Thank you all for continuing to lift us up in prayer. Your love means the world to us, and we are humbled to continue to share our journey with you all! May God bless us and make us a blessing.

Rest

Daisy sleeping
Even Daisy feels overwhelmed and needs to rest sometimes!

 

Sometimes November’s busyness feels like it’s trying to keep up with December’s. Grace and I were discussing my rehearsal and concert schedule for the next two months and we felt a bit overwhelmed looking at all the blocked out dates on our calendar. It was around that time that I read Psalm 127 and a verse jumped out at me:

“It is useless for you to work so hard
    from early morning until late at night,
anxiously working for food to eat;
    for God gives rest to his loved ones.”

Wow. I don’t know about you, but most of the time I feel like I am constantly expending energy toward this worthy cause or that, and trying to rest intermittently. To be clear, this verse doesn’t recommend giving up work. Work existed before sin came into the world, as part of God’s perfect plan for mankind. But this verse does admonish us to do away with working anxiously.

Rest comes from the Lord. He reminds us of this in so many ways throughout the Scriptures, using imagery of lying down in green meadows next to peaceful waters, the unburdening of a heavy yoke in exchange for a light one, or multiple promises of peace that transcends human understanding.

If I know all of this, why do I sometimes still feel anxious and resort to working feverishly? Maybe it’s because I fall under the illusion that everything depends on me–that if I fail everything will fall apart. Well, thank God, everything doesn’t depend on me. It doesn’t depend on you. God works in all things to bring goodness out of messiness, healing out of pain, life out of death.

Now if I could just remember that…

As we enter a season focused on thanksgiving, I hope we will all pause for a moment–or longer–and give thanks for the true, deep, soul-satisfying rest that only God can give.

Caring for Your Spouse

Yogurt Run
We went on a frozen yogurt run 144 days before the accident…

 

Ivan: Spouses are called to care for one another, but things get really interesting when a severe, life-threatening accident gets thrown into the mix. I was 23 when a man ran a red light and hit my wife at 40 mph as she was walking in a crosswalk (there was a security camera at the intersection). Grace was also 23. “But we were so young!” Is there ever an “appropriate” time to become a caregiver for one’s spouse? There is something wholesome and sacred about all husbands and wives who stay together and care for each other till the end. I pray that God will give me the privilege of taking care of Grace for decades to come. That being said, you don’t usually think of couples in their 20’s operating under a “victim-caregiver” dynamic. Grace and I are very aware that we are not the only newly married couple to face something unexpected and devastating. We share our story in the hope that whoever reads our words may be encouraged.

What is it like being a caregiver for your spouse? It’s hard. It’s hard because everyone has 24 hours in a day and a finite amount of energy with which to take care of the many things that need to be taken care of in a day. Usually the demands of work and family life are enough to leave people feeling exhausted. Adding serious medical needs doesn’t help. Somehow you have to keep being employed and keep meeting “normal” social and relational demands while also helping your spouse. The spouse is understandably unable to do as much work (professionally and at home) as before, so the caregiver is responsible to make up the difference.

In addition, the spouse being helped is aware that “if it weren’t for them” their spouse wouldn’t need to be a caregiver. This can create feelings of frustration both at the situation itself and its effect on the caregiver. The caregiver also needs to be sensitive about how to “cope” with the exhaustion and frustration arising from the situation, because it would be easy to inadvertently make the “victim” feel responsible (even though in our case Grace is 100% blameless for what happened).

Sometimes I feel like there is a train called the “train of life,” and a major accident has derailed it. But somehow the train is still expected to function “as usual” because “life goes on.” How do you get the train back on its rails?

You push it back on to the rails and then you push it until the engine slowly comes back to life. Then you keep pushing.

Why do all this? Sadly, many don’t. Many give up and leave because “this wasn’t what they signed up for.” And if we’re honest, that reason (or excuse) makes sense. Then how do we account for that voice that says, “That’s not how it should be! Stay for love…”

No one has greater love than this, that someone would lay down his life for his friends.” John 15:13.

I never know when the next seizure will come. When they do inevitably come–because we can’t cocoon Grace in a life completely insulated from any chance encounters with light triggers or fatigue triggers–I have no power to make them stop. If I’m present with Grace and not at work or someplace else, I literally just sit there next to her and wait for the seizure(s) to stop. It feels completely helpless. People don’t like to feel helpless. But it’s part of my calling now to care for Grace.

There was a time last year when I worked many hours to make up for the income Grace lost because she could no longer work, and I was finishing my master’s degree, and I would come home, administer a blood-thinner shot in Grace’s arm because her knees were broken and she was stuck in a wheelchair and we didn’t want potentially fatal blood clots to form, then I would help Grace with her self-care, then I would clean her G-tube which had been infected and had developed pressure sores from being installed inappropriately, then I would sleep, wake up, repeat. But that was part of my calling to care for Grace.

Grace and I miss going to church (we hope we can go back to trying to go to church again, once Grace has rested up and recovered after our recent hospitalization). We miss the fact that she hasn’t been able to attend events at VCS or meet my students and coworkers. We miss the fact that (unlike many of our peers) we are not able to travel freely abroad, or even to Southern California, or even around town. Or eat out. Even watching TV sitcoms (Grace introduced me to Seinfeld a while back and my life hasn’t been the same since) is risky, because light triggers could come onscreen at any time (Grace has been triggered during Seinfeld episodes, fyi…). Movies are also risky. Walking outside our front door feels like leaving Rivendell to walk to Mordor. But even inside our apartment she’s not safe from triggers, so it’s not quite an elven sanctuary.

I’m rambling, but you get my point. Peace of mind is hard to come by. I would have crumbled long ago were it not for my Foundation. “On Christ the solid rock I stand, all other ground is sinking sand.”

“In Christ alone my hope is found,
He is my light, my strength, my song
This Cornerstone, this solid Ground
Firm through the fiercest drought and storm.
What heights of love, what depths of peace
When fears are stilled, when strivings cease
My Comforter, my All in All
Here in the love of Christ I stand.”

“Turn your eyes upon Jesus
Look full, in his wonderful face
And the things of earth will grow strangely dim
In the light of his glory and grace.”

Only God is strong enough, kind enough, patient enough, faithful enough, constant enough, to face life’s biggest challenges. I know I’m not. I pray that all of us would come to the only Source of true Life as difficulties keep coming our way. Our Shepherd walks with us through the darkest valleys…and leads us through into the light.

Surely your goodness and love will follow me
    all the days of my life,
and I will dwell in the house of the Lord
    forever.” Psalm 23:6

Soli Deo Gloria.

Update and Thoughts

 

 

Daisy Mae
Daisy Mae makes the days brighter!

 

Hi all, long time no see! Time for a quick update and some thoughts. Recently we’ve had a higher number of seizures, which is always difficult to deal with. It’s hard for Grace to go through that, and it’s hard for me to watch her go through that. But she keeps battling, and I’ll keep trying to help her as best as I can.

I once heard that difficult times can either drive people away from God or point them toward Him. For my part (and Grace’s), I have come to rely on God more and more as trials keep coming. A year and a half ago, when the accident happened, I learned very quickly what it felt like to not be “in control.” So many of the things we usually take for granted—abilities, opportunities, time, energy, and other resources—are actually gifts from God which are His to give and take away. In fact, it’s all His to give or take away. We are merely stewards.

I have also realized more and more how transient our life on earth is. Man is but a breath, here today and gone tomorrow; eternity is long. Selfishly, I almost wish that Grace and I could be in Heaven already. But I am reminded that God has a purpose for every person during their earthly journey: namely, to enjoy and glorify Him and help others discover Him for themselves! How amazing is it that that is God’s ultimate desire—He loves us that much!

So we persevere! Grace and I want you all to know that we are always grateful for your love, prayers, and support, and that we pray for you all too, as much as we are able. All of us bear burdens of varying sorts and daily encounter people carrying their own loads. But “Praise be to the Lord, to God our Savior, who daily bears our burdens.” (Psalm 68:19)

P.S.: I want to specifically thank my family, my parents and two brothers, for their support for me and Grace throughout the past year and a half. They have prayed for us unceasingly, and I know I can always turn to them for love and support. Back in December 2016, my dad spent multiple nights in the hospital staying up all night to watch Grace so that I could get some rest. He himself had to pass other nights trying to “sleep” on hospital lobby chairs. My brother Eric drove down to Riverside from Fresno the day right after the accident and encouraged me continually. Mom, Dad, Eric and Joey, thank you, I love you all, God bless you always!

Patience is a Virtue

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Hi everyone! Time for a weekly update…from a medical perspective, we’re still trying to find the optimal dosage level that will be strong enough to resist seizure triggers. In the past few weeks we’ve seen a drop in the number of Grace’s seizures, so we believe we’re on the right track. But realistically, it will probably still be weeks (if not longer) before we reach that optimal level.

It’s always hard to wait for something you really want, especially if in the meantime you feel weighed down by a giant burden. But God grants the grace and ability to “wait patiently,” as David testified in Psalm 40:1, when he said, “I waited patiently for the Lord, and He turned to me and heard my cry for help.”

God is present in the waiting, and will accomplish all things for the best, in His time. Grace and I are also so encouraged and grateful to know that we have so many friends and family members praying for us every day! We can’t thank you all enough for that. You are our “cloud of witnesses,” faithfully lifting us up in prayer. Thank you all for waiting with us!

Fighting Seizures

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No magic ring is involved…

Hi all, long time no see! Thanks as always for your continued love, prayers, and support. Since VCS had the week off, I thought I’d write a bit this time. Grace and I are still battling her seizures. We are continuing to work with her doctor to find a medication that’s a good fit and will prevent these seizures from happening. Just as a reference point, Grace has had 37 seizures in the past two weeks. She’s starting to experience severe muscle pain in her neck and shoulders from all the tension her body sustains during her seizures. She’s still essentially house-bound, as it is far too risky to venture out and have seven back-to-back seizures (or more).

To continue the war analogy, we are still in the trenches. It’s hard to tell when we’ll negotiate a “peace treaty,” but we sure hope we’ll be able to do that soon. As Grace’s husband, it is agonizing for me to sit and watch her when she’s having these seizures, because I am powerless to stop them from happening. It’s even harder to watch her battle to keep moving forward one day at a time, with no guarantee of when this will end.

But it is in times like these that we cling to God. The darker the trial, the more brightly His grace shines. The heavier the burden, the more deeply felt is His presence and sustenance.

We all need oxygen to breathe, and most of us do so without giving a second thought. But it’s not until someone is reliant on a respirator to stay alive that every breath is recognized as a precious gift. So it is with God’s grace. We are lost without it, and most of us fall very short of thanking God for lavishing it on us daily. But perhaps when life hits us hard, our eyes are opened and we are presented with the opportunity to thank Him for His love. When we give thanks, we experience God’s love more richly.

Therefore we do not give up. Even though our outer person is being destroyed, our inner person is being renewed day by day. For our momentary light affliction is producing for us an absolutely incomparable eternal weight of glory. So we do not focus on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal.” (2 Corinthians 4:16-18)

Earthly trials sure don’t seem “light” and “momentary” while we go through them, but eternity is a very, very long time…thank God for inviting us to be with Him during all that time! To Him be all the glory and honor, because He deserves it.

When you need a third hand…

Splints
Splints accumulated since moving to San Jose…

 

Hi everyone! Grace and I would like to share with you an aspect of her recovery that we haven’t posted about before: her right hand. As we know, Grace’s left hand was affected by the stroke, so that she has no sensation in it and has been working through therapy to learn to use it without the sense of touch. Since her right hand has been her only usable hand throughout the past seven months or so, this has led to the development of some injuries in her right hand and arm, presumably from overuse. There is also a possibility that some of her current pain is a result of trauma from the initial impact–at the time of the accident, Grace was carrying her violin case in her right hand. Some muscles or ligaments may have been damaged, but given Grace’s critical condition at the time and no external warning signs, the right hand was not a super high priority.

Around the beginning of March, Grace started experiencing pain around her right thumb and wrist. Her occupational therapist in Riverside diagnosed her condition as De Quervain’s tenosynovitis, which is swelling of the thumb tendons located in the wrist. She gave Grace a splint to wear, which is designed to immobilize the tendon to allow it to rest. When the first splint didn’t help, she gave Grace a second kind; but after 10 weeks that area still hurt.

When we made it up to San Jose, we explained our situation to a sports medicine doctor, who gave Grace a cortisone injection to help relieve the pain and inflammation, as well as a third kind of splint to try. As Grace and I started occupational therapy in San Jose, our new therapist spotted that it was not just Grace’s thumb tendons that were swollen, but that the swelling went all the way up to her elbow tendons. She subsequently tried ultrasound therapy on Grace’s right arm and wrist, and gave us a fourth kind of splint, but after four weeks, the pain still hadn’t gone away.

So today, Grace and I saw a hand surgeon for a consultation to see if she had any new information or advice. She explained that sometimes it takes multiple cortisone shots before we can see any effect. (As a brief aside, the normal progression to heal from De Quervain’s is splinting, then cortisone shots, then a surgery that creates space around the thumb tendons, allowing them to heal more quickly.) So our choice was to try another cortisone shot (which, Grace tells me, really hurts) and see if more time will help her tendons heal, or to go ahead and do the surgery. From the doctor’s perspective, there wasn’t a “better” choice necessarily, since short of surgery no one can guarantee the desired outcome. However, the surgery would mean Grace could not use her right hand at all for at least six weeks, effectively leaving her without the use of either hand. Given this dilemma, we decided to try another cortisone shot, along with a fifth kind of splint, while scheduling a surgery date in September in case this second shot doesn’t work.

Please pray for Grace during this time! She has worked so hard at her therapy and “homework” exercises, in order to get stronger and better, and she has done all of that while trying to “rest” her overused right hand as much as possible. Grace has a very high pain tolerance level, so if she says something hurts, it definitely hurts bad. As always, we are trusting God to guide us step by step, but there are moments when we’re more tired and worn out than at other times. This also reinforces the fact that recovery is not linear–there are ups and downs! But we’ll keep walking step by step with our gracious and merciful Lord, and we can’t thank all of you enough for walking with us! Thanks again so much! 🙂

“Taste and see…”

Affogato
Sometimes God’s blessings come in little ceramic cups…

 

Taste and see that the Lord is good;
    blessed is the one who takes refuge in him.” – Psalm 34:8

As I’ve been meditating on this verse, and how it applies to Grace’s and my situation, I realize that our situation is not unique. I realize that all of us have hurts and burdens, fears and worries, each in our own way. We have all at some point in our lives experienced both little and big challenges…valleys that we must walk through. If I may, please allow me to share some of what has been going through my mind recently.

God is good. “All the time.” And all the time… “God is good.” How true is this statement? Can it really be true? How can God be good all the time? Yes, God is good when we get married; God is good when we graduate; God is good when we get the job; God is good when the vacation goes well; God is good when the newborn baby is healthy and mom is doing well; God is good when the family is all together under one roof; God is good when we win the game, when the performance goes well, when the stars align.

Is God still good when we lose the job? When the labor and delivery nurses look concerned? When drivers run red lights? When the house is constantly filled with raised voices? Or rather when the silence is unbroken?

Is God still good when loved ones suffer? When death comes in all its guises: suddenly, with no warning…inevitably, after an interminable length of time…at random, taking whomever it chooses…or irreversibly extinguishing a lone candle? Is God still good when justice seems nowhere to be seen? When the burden seems too heavy and all strength is gone?

“Taste and see.”

“God is good.” All the time. “And all the time…” God is good.

All the time. How can this be? Because the goodness of God is rooted in His immutable character…He can’t not be good! It’s impossible! As long as God is God–which is forever–He will always, always, always be good!

What cause to rejoice! What reason to get up every morning and thank Him! What hope it gives to just take the next step!

You see, circumstances change. Feelings change. Even people change. One day, a loved one is healthy, the next day they are not. One day he really cares about you, the next day he does not. One day the promotion is guaranteed, the next day it has disappeared. Et cetera, et cetera…time only shows that life is a series of ups and downs! Where does that leave us, if we don’t have an everlasting, unchanging foundation? Where does that leave us, if the only thing we are relying on is our own strength, or the reliability of things which by nature are always shifting, changing?

God alone never changes. He alone remains faithful, day after day, year after year, eon after eon. The Cross of Calvary will forever remain a testament of God’s unconditional love. Who Else would willingly suffer like that for the sake of people who have rejected Him? Who Else would bear our hurts, wounds, and scars, in exchange for life, love, truth, goodness, and beauty?

What an incredibly humbling honor it is to be able to walk with Christ…to rest in His love and grace daily, to depend on Him and trust Him, to be filled with the power and joy of His Spirit?

A few weeks ago we celebrated Easter, when Jesus rose from the dead–He came back to life–defeating sin and death once and for all, and freely offering the gift of life. Not just life here on earth, but eternal, unending, sinless, hurt-less, divine heavenly life! A life of constant, close communion with Him, loving and worshiping Him and experiencing more and more His glory and goodness!

For our momentary light affliction is producing for us an absolutely incomparable eternal weight of glory.” – 2 Corinthians 4:17.

Jesus redeems. He does not shield His children from the hurts of this world, but He has promised to overcome, heal, redeem, reward. “He heals the brokenhearted and binds up their wounds.” – Psalm 147:3.

Come to Me, all of you who are weary and burdened, and I will give you rest. All of you, take up My yoke and learn from Me, because I am gentle and humble in heart, and you will find rest for yourselves. For My yoke is easy and My burden is light.” – Matthew 11:28-30.

Jesus said that. His invitation is still open. Come to Him, taste and see that He is good.

A New Chapter…

Selfie 5:17:17

 

Hello everyone! It’s been a while since I last wrote in, but Grace and I have some big news we’d like to share with you…we’ll be moving from Riverside to San Jose at the end of this month! This is a decision we’ve been praying and thinking about for a long time, but we’ve come to the conclusion that we’ll need to be closer to our families as Grace continues to recover. Grace’s parents live in San Jose, and we’ll actually be staying with them for a time until we can find our own apartment. My parents live in Concord, which is also nearby, so it will be a huge blessing to be so much closer to our families!

Thank you as always for continuing to pray for us…we can’t thank you all enough. Please pray for us now as we prepare for our rapidly-approaching move! We know that God has His sovereign hand in all of these matters, and we want to continue to trust in His timing and provision, and to rely on His strength, peace, and wisdom during this time. Thank you all again so much for your love, prayers, and support!

In the words of C.S. Lewis: “Further up and further in!”