Category: Brain

Words Stuck

It seems I write update posts for this blog, then life dramatically changes again before I get a chance to post.

Here are short highlights of things I wanted to tell you. I feel like I need to race to try to update with the basics.

  1. Our almost-16-year-old is now deaf.
  2. That happened 8 days ago, as I was at orientation for my new job that puts  me full-time (well, I only get paid for part-time, officially am volunteering every other hour she is on campus, but now have full access to staff locations and resources) at her school.
  3. After my first week, my one-on-one student and I have forged a workable truce. I respect he doesn’t want or “need” an aid and strive to give him some leeway. He respects that I have a job to do and will push back when he pushes too far. He has three times said “thank you” to things he initially resisted, and he has twice assured me to “not take it personally” because his resistance is toward the idea of having ANY aide, not anger at me individually. Between my strokes and our daughter’s journey, I feel for the emotions this young man is processing right now!
  4. By last period of Friday, he turned in the best assignment he had given one teacher all year, thanks to a series of 5-minute timers set on my phone and my continual encouragement to engage in the next thing. He is starting to see some of the benefits of how I can put him on a more-level playing field with peers, thus making his world a little easier.
  5. I’m EXHAUSTED! The latest I’ve gone to bed was 9, once this week, on a day I had also taken an after-school nap. Friday night I was in bed by 5:30 or 6! Most of the week it was around 8. My body is in physical in pain from mentally and physically pushing myself for over 7 hours each day. But I am excited to be making a difference in one child’s life, and ever-so-thankful to have such immediate access to my daughter when she needs me. And they are even paying me too!

To give today’s update, I borrow words from my sweet friend Joy DeKok, when she announced her breast cancer today:

I wasn’t sure I was going to share this just yet because sometimes life experiences are hard to talk about. And intimate…

That’s when the words get stuck in my throat…

In all of the uncertainties, I am surer of God than ever before. His Word. His love. His plan. His Goodness. This disease is changing so many things in our lives, but it has no power to change God – He is the same yesterday, today, and forever. He is the I AM.

No matter what – I believe in the One who is the Way, the Truth, and the Life!

Even when the words get stuck in my throat.

R. and I stayed home from work/school today. I am setting timers for every 15-20 minutes, all day long, to check in on her. I hold my breath as I approach her room, never knowing what I will find. I breathe a prayer of relief and praise when I find her conscious yet again. This is no fun!

My same sweet girl who has now had 37 documented faints and been seen in five different hospitals in three states, all within the past 4 1/2 months, just spent another two nights in a local pediatric ward. (She is up to 14 admission nights this fall/winter, between four facilities.) We have ridden so many ambulances and visited so many emergency rooms I can only count them by the stack of bills now. Of all the trips, this was probably our most physically and emotionally brutal stay. The staff were amazingly fantastic. It is her body continues to mystify doctors and is getting downright cruel in how that plays out.

Before you ask, yes we are investigating autoimmune, various forms of poisoning like lead or mold and other, bird- and animal-born illnesses, birth defects and genetic causes, and all of the most remote possibilities anyone can think of. So far nothing medically makes since. We now have four profound diagnoses at play, and even all together, there are symptoms that remain unaccounted for.

Though God is bringing some clarity as to what processes are unfolding, we are still clueless as to why they are happening, nor how to make anything better. By the week, sometimes by the day, she continues significant declines. Fainting. Hair loss. Blindness. Deafness. Now something that looks a lot like seizure, yet isn’t anything area doctors have seen before.

As you continue to pray for us, we are petitioning God to bring hidden things to light; give wisdom, clarity, inspiration, and insight to our care teams; clearly direct our steps by opening and closing doors; peace and His joy through the process; physical and emotional comfort and release from fear for our whole family, especially R.; and ultimate healing from the Great Physician and Wonderful Counselor, in His way, His will, His timing.

We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed. We always carry around in our body the death of Jesus, so that the life of Jesus may also be revealed in our body. For we who are alive are always being given over to death for Jesus’ sake, so that his life may also be revealed in our mortal body. So then, death is at work in us, but life is at work in you.
– 2 Corinthians 4:8-12 (NIV)

God has worked so mightily in my heart since I first looked at 2 Cor. 4 after my strokes!

He did this so that all the peoples of the earth might know that the hand of the LORD is powerful and so that you might always fear the LORD your God. – Joshua 4:24

For he wounds, but he also binds up; he injures, but his hands also heal. – Job 5:18

In his hand is the life of every creature and the breath of all mankind.- Job 12:10

Save us and help us with your right hand, that those you love may be delivered. –  Psalm 108:6

The works of his hands are faithful and just; all his precepts are trustworthy. – Psalm 111:7

Your hands made me and formed me; give me understanding to learn your commands. – Psalm 119:73

So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand. –  Isaiah 41:10

Humble yourselves, therefore, under God’s mighty hand, that he may lift you up in due time. – 1 Peter 5:6

Explaining Soup

It has been 7 weeks at 2 days since our 15-year-old’s saga started. We’ve been in local ER 4 times, twice resulting in 2 night local admissions, once sent home, and most recently the local ER visit resulted in her getting ambulanced to an out-of-state hospital for a 3-night stay last week. (The ambulance made it in 4 1/2 hours in the middle of the night with clear weather, but drive has taken as much as 8 hours with bad weather and traffic.) We also flew ourselves to a different children’s research hospital three weeks back, where she spent two full days in about 10 1/2 hours of outpatient appointments, followed 3 nights inpatient.

Between all these hospitals, I’m happy to say we have ruled out pretty much every imaginable life-threatening issue we would need to take imminent action to address.

We know a ton of things that are NOT wrong with our girl, and for each we are very thankful!

She has been off medication for over a week (last dose was a week ago Wednesday) and fainted again Sunday night, twice Tuesday (instigating the ER trip that resulted in Stanford ambulance), but not at all since. Perhaps we are dealing with  something in the autonomic world??? (Yes, we started with a tentative POTS diagnosis on our very first hospitalization, then that has been repeatedly questioned, medications have been tried with severe complications, and now we seem to possibly be circling back around to something potentially related to the original diagnosis.)

We anticipate about three more months of intensive testing, likely to unfold in about four different states, before we expect to have clear answers. I’ll probably not talk much about specifics, or answer most questions, as it is all rather overwhelming, confusing, and medical advice is often contradictory.

What I do know, what we cling to now more than ever before, is that God is sovereign, that He has a good plan for our daughter and for our family, and that He is loving, just, and wise.

Current issues are fainting (though not in the past six days – thank you Lord!), blindness, hair fall (but most of her bald patches are filling back in with new growth), some recent hearing loss (as of a week ago Sunday), and fairly intense cognitive/memory issues (since Tuesday, Oct. 23rd). Tuesday morning our daughter initially did not even know her own name, when the school was trying to wake her from her first faint. After that, she knew one classmate, but only the name and not why she knew the name or who this person was. It was a hard struggle, but she could piece together who Rick and I, and both of her brothers (though one only by nickname and not given name) were.

The one and only name she did not struggle to identify, came about an hour after initial faint. I asked, “Who is your Savior and Lord?” Without a moment’s hesitation she beamed, “Jesus!”

Our girl has gradually regained more and more grasp on reality, remembering a few past events. She currently has about an 80% grasp at retaining most new-to-her information as we tell it to her. She remembers next to nothing of this entire past couple of months, does not remember having had either surgery earlier this year, or that she has ever broken any bones – she’s broken 8 for the record.) She does not know her favorite color (Rick says blue, I think it was green) so has decided (remember, she is blind, so this is a memory choice) that she now prefers yellow.

We eat soup and tacos each several times per month; she did not know either word and we had to explain both. In most things she acts like a mature nearly 16-year-old. Random words and memories are totally non-existent to her. And we are dealing with a lot of breakthrough 4-year-old type questions and emotional behavior.

Please pray as Rick and I and her school, as we start arranging accommodations to face these newest challenges.

Bald Blind BEAUTIFUL

Yesterday, our daughter posted a selfie on instagram. In her own words, her hair “was falling out in handfulls, and I told myself I wasn’t going to loose my hair to sickness or medications, and if I was going to be bald it would be because I was confident enough to not feel like I need my hair to protect me or make me beautiful and to be able to shave it off myself, so that’s exactly what I did”.

In synopsis, since September 8, we have been in two ambulances, three emergency rooms, countless doctor’s offices, and inpatient in hospitals in two states, three times. We know a ton of information about what is NOT going on, but no clear answers about why she is struggling.

She hasn’t fainted in three weeks now. She is still totally blind (lost eyesight within 48 hours). Over half of her hair fell out, in individual strand cascading like a waterfall, (over two weeks) then in huge chunks as large as 4×6 inches of baldness at once (over 36 hours)! We broke down and shaved the remaining hair on Wednesday after another huge section on the side of her head came off with the beanie she wore to school on Wednesday to camouflage the large patch missing off the back of her head. One area fell out in a nearly-perfect heart shape, so once we shaved her remaining hair to ¼ inch, the bald heart looked intentional.

Today will be our third doctor’s appointment of the week. She is very frustrated by the amount of school she is missing. We are tying to emphasize that our priority is her well-being. The teachers, school staff, and her counselor are being fantastically supportive. The school started her on learning Braille on Wednesday and started mobility safety training with her VI (visual impairment) teacher today.

We are on the waiting list for a referral to an “undiagnosed conditions” program out of state. Please join us in praying that she will be accepted into the program (they receive so many applications that only a small fraction of kids actually get in). Also pray for doctors to have wisdom to figure out what’s going on and be able to help her. According to God’s perfect will and timing, we are simply requesting full healing for our girl, whether He wants to accomplish that through the common grace of medical aid, or to move miraculously to bring about dramatic healing that glorifies His name by leaving the medical community without explanation!

It is a HARD road we are walking. (If you don’t know the backstory, I told more at missed-deadlines and literal.) We are clinging to God’s grace through the darkness.

I cry to you, LORD;
I say, “You are my refuge,
my portion in the land of the living.”
– Psalm 142:5 (NIV)

Literal

My heart leapt with joy at the sound of singing coming from my daughter’s bedroom a couple weeks back. Beautiful melody is common from my teen who has won multiple talent shows and serves as a lead singer on her youth group’s worship team. What caused this song to capture my heart was the literal way it illustrated this blog’s “In Darkness Sing” theme.

 

At her request, over our past month, I have refrained from sharing identifying details. However, issues have now progressed to a life-altering levels, tested and researched enough to lead us to believe we may be facing these challenges for the long-haul. Hope and peace continually collide with fear, anger, and grief.

 

What made my songbird’s worship touch my heart so deeply 15 days ago (and every day since)? The understanding that just the day before her song reverberated down our hallway, her eyesight had totally vanished, after just a 48-hour battle. In the terrifying wake of uncertainty, blind faith in her Creator was being very literally tested. Her grace astounded, challenged, and convicted me as I wrestled through my own confusion.

I am writing from our 3rd hospital in 3 ½ weeks, this time a major, out-of-state one we had to fly to on Sunday. Monday involved 4 ½ hours of one-on-one appointments with two different specialists.  Yesterday was another 6+ hours with an even more unique sub-specialist. We were admitted last night and got little sleep as major testing unfolded throughout the wee hours.

 

Questions and theories abound.

 

Answers remain few.

 

Our daughter remains sightless.

 

As we were sitting in our first appointment of Monday morning, our son called with his own fresh, raw, devastating news. Rick flew home on Tuesday to get back to our boys as one of them walks his first real grief journey.

 

My in-laws have been here. I’m so thankful. However, they cannot stay past Friday. Since testing could continue into the weekend or beyond, I’ll be checking into another Ronald McDonald House for an indefinite length of time. We are hoping there will be a room available tomorrow. In times like these, I really miss my ability to drive!

 

This I know:

Earth is temporary and fading. God is constant and eternal.

 

If my girl can sing praises to Him, in the midst of her darkness, I choose to do the same.

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