Category: Health (Page 1 of 2)

Nearly Four Weeks Since Her Last Faint!

Tomorrow night will mark four weeks since 16-year-old R’s last fainting episode. Since that faint was number 31 in 20 days and 4 hours, we got her on an airplane and down to lower altitude. We have been staying near two major medical institutions (where her health has been being addressed by multiple kinds of world-leading specialists).

We are making medical strides on a weekly, sometimes daily, basis! The more than gets calmed down, the more underlying layers become evident. There is still much work to accomplish here.

The hope in giving her body a full 60-day reprieve from altitude, while simultaneously addressing a host of underlying triggers that are pushed over tolerance levels by elevation, is that we will be able to permanently return home at the end of summer and that her health remains stable there.

We have had days here with as many as four medical appointments in a single day, and weeks with anywhere from two to five appointment days in the week. However, as a stroke survivor and a teenager alone together in a state where we had met no one prior to January, we are also striving to approach this trip with as much of a “vacation mindset” as possible. The fact that R remains faint-free is helping that goal immensely!

Since neither of us has a driver’s license, we’ve gotten really good at RideShare services, shuttles, and walking much further (pushing my pretty pink walker, Bubbles) than either of us are used to. We have a great church home-away-from-home that we’ve managed to visit three of our four trips down here in since we started these trips in January.

The youth group has included R in all their events and welcomes her to participate in much summer fun.  We’ve enjoyed cooking and art offerings at the local libraries, weekly classes at a community center, are in our community pool about four times a week, and are taking one “big” special memory-making outing per week. This week we’ll get trained to volunteer at the local animal shelter.

Our first week here was rough, between excessive heat, bugs, and a major issue with the former tenant, all without knowing folks or having much of a support system yet. Now we’ve somewhat acclimated to the temperatures, made lots of medical progress, gained a few friends, become more confident in our own abilities, more knowledgeable of our resources, and settled into more of a routine.

We’ve done girly things to redeem the years my strokes stole from us, like manicures, pedicures, home facials, and hair coloring. We’ve selected beautiful mother/daughter rings.  We’ve taken “mermaid swimming lessons” (complete with fins and tails – I can’t initially get pictures to upload, but I’m trying), and we went indoor sky diving – both were less terrifying but more physically demanding than I had anticipated.

R was the “rock star” (flight instructor’s words) of the mermaid and skydiving classes, while I made excessively modified attempts at each and my body demanded I sit much of the activities out. I was amazing to sit back and watch R thrive though. She’s nearly always smiling, but after past few years she has endured, truly living is a beautiful thing to witness happening in our girl’s world!

I am so glad R wanted to learn how to make “raw lasagna” this week. This free author presentation at the library was actually one of my favorite activities down here, so far. I was capable of many of the skill required, and the results were easy, delicious, and beautiful. Because of all our time in swimming pools, I also just re-learned to do in-water somersaults, something I’ve done since my earliest childhood memories, but had not been able to master since my strokes, coming up on 8 years this fall.

I don’t know why pictures aren’t uploading from the road, but I wanted to get you an update before more time passed. I have successfully added a few pictures with this post’s link (June 22, 2019) on my Facebook page, Harvesting Hope from Heartache, if you wish to view them there. (I would be delighted if you “like” the page while you are there too. Thanks!)

31 in 21

All our family lives here. Two decades of friendships are here. Our amazing church family is here. We know the schools and the medical system.

However, we are hopping on another airplane first thing in the morning. Rick will escort us to another state where R. and I will spend 60 days to learn the reality of longer-term impact of lower altitude on her body. We will see a half dozen different specialty doctors while there.

We will give the trip everything we’ve got. We will fight to successfully return home at summer’s end. We should learn if a two-month reprieve was enough to reset her body, allowing us to continue to live in the only home she has ever known.

The past three weeks have been tough, with 31 drop-episodes (faint-like events) in 20 days and a few hours. Our immediate hope is that tomorrow’s geographic change will put a dramatic stop to the faints. Our long-term dream is that the impact will be lasting once we return to altitude in late July.

Prayer Needs:

Please pray for 16-year-old R. as we seek God’s continued grace and provision of answers as we strive for her health.

Please pray for me as I “single parent” in a strange place without my support team (or a driver’s license).

Please pray for Rick and our boys J. (19) an J. (13) as our family is divided for two months.

Please pray for wisdom for our doctors and very clear future direction.

Jesus Help!

What a week.

After an amazingly “stable” (for us) month with very few drop episodes (faints), we are in a storm! R. was 12-days episode-free when she went down Monday afternoon, the first of eight document-able drops in these past 4 1/2 days.

We’ve been in one ambulance, and two emergency rooms, for her. My baby girl (age 16) got poked and prodded with 10 needles over two days, just to get one tiny blood sample and run a single liter of fluids. (More tiny needles too, because EMTs always do a finger prick to verify stable blood sugars, but those are nothing like the 7 failed IV attempts!)

We managed to create emergency code calls at school every day we attended school this week. The one day we didn’t go to school, we visited the hospital for a planned procedure, and she passed out in the food court there, creating a hospital code call with six emergency responders immediately jumping into action.

The school also had to call an ambulance for me on Monday after her first event. (I couldn’t find her when the emergency announcement went out Monday, so ended up “running” – if you could call it that in my post-stroke condition – down five different long school hallways before I got to her.) I spent three hours in urgent care, had a steroid shot, two breathing treatments, and am now on a week of home Prednisone and a shiny new inhaler, for exercise-induced brochio constriction. God has been gracious in allowing me to be there for R. all week, in spite of steroids that typically are emotionally crippling, and ongoing asthma attacks.

What we are thankful for today:

1. R. can still see.

2. R. can still hear.

3. R. continues to wake up.
Fifty-eight times over the past 8 months and 3 days, she’s gone down, but regained awareness within an hour and a half or less (sometimes in as little as seconds, often within minutes) each time.
Every time we see those beautiful brown eyes flutter open, or hear her tired and frustrated “Hi,” upon comprehension of what has happened again, I breathe a prayer of relief and utter thanks.
Every. Single. Time.

Prayer needs:

1. This situation is progressing. We have some of the very best doctors in the world currently trying to crack the mystery. God already KNOWS exactly every detail of what and why. He can bring hidden things to light. In a word, He can heal.

2. R. is a trooper, but she is hurting.
This is a brilliant, talented, funny, amazing young lady, who no longer is allowed independence to even shower or use the restroom alone (as she has gone down doing both). Driving, preforming, babysitting, summer camp, pretty much any normal teen activity, is totally out of question right now.
Our historically straight-A student has missed so much school this year, that school administration and teachers are working creatively to help her even earn high enough grades to even qualify for course credits so that we can count some of her sophomore studies toward graduation requirements.
Physically, she has a migraine headache that has not dropped below a 4 pain threshold (often much higher) since February 18.
She is utterly discouraged, embarrassed, and overwhelmed, in addition to the terrifying unknown and bodily suffering.

3. Our entire family is feeling hard pressed. R’s bothers (19, 13) are watching their sister get worse and worse. We all are feeling helpless, are fighting hopelessness. It is scary and confusing.
Our oldest has his own mystery medical struggles that have kept him primarily bed-bound since last fall. While the battle isn’t as intense, it is a continual struggle, without many more answers for J. than R.
Rick and I feel at such loss for the next steps God would have us take. In one sense, our marriage has been driven closer than ever, as we cling to each other at the foot of the cross. In other ways, the pressure on our marriage is so incredibly intense and we struggle in many ways!

“Restore” has been my word for this season. It is my heart’s cry. Would you please join us in praying for this?

DeafBlind Communication

I’ve been repeatedly asked how we are communicating with our daughter through the combination of blindness and deafness. I’m actually finding an amazing number of resources, but being less than two weeks into our experience, we are just in the very initial stages of finding what works for us. I honestly don’t yet know much about how other people cope with dual sensory loss, but here is what we are doing so far.

I learned Sign Language in high school and college. As I taught my kids the alphabet, I taught them their manual letters, so they have each known how to finger-spell since before kindergarten.

It is slow and tedious as an only form of communication. Like texting, when left without tone of voice, facial expression, nor body language clues, mixed with STRESSED parents and teen hormones and mood swings, we (all of us) have tears many times each day, from misunderstandings, hurt feelings, and frustration.

It is hard, but we are so thankful to still have this bridge into our daughter’s world by spelling one letter at a time into her hands! I keep reminding myself of how Helen Keller started, without the verbal and visual background R. can still access in her memories, and I know God will bring our girl through this storm.

Because she can pick up vibrations, we have also established some family codes, like I’ll walk into her room and knock on the wooden frame of the bed she is in – tap 1, 1-2, 1-2-3 in quick secession – to say, “I love you!” When we need to get her attention fast, like alert her she is about to be in danger, the whole family starts banging on walls and stomping hard on the floor – occasionally she will feel the vibrations in time to freeze so she doesn’t trip over something in her path. (Edited to add that today we had a big scare when she walked two car lengths farther than I had directed her to do and walked out into an open parking lot during the busy time of after school pick up.)

Exploring YouTube, I found a few fascinating deafblind videos. Here is one where two friend help their friend experience a world cup game. This video  explains the basics of the development of Pro-Tactile ASL (American Sign Language) by the deafblind community.

Nation Center of Deaf-Blindness

American Association of the DeafBlind

National Family Association for the DeafBlind

Helen Keller National Center

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

When They Say You Are Crazy

A year ago today, R (soon to turn 16) was having surgery to remove all cartilages from her 4 lowest left ribs, along with a little bit of sharped bone. Little did we know that in May, she would have another rib surgery on the other side, along with that accompanying hospitalization.

Then 30+ faints over the past 4 months and 1 day.

Or to 2 concussions, blindness, hair loss, significant hearing loss, and some memory issues.

Ten hospital night stays broken up between 4 different hospitals.

Seven ambulance rides (including a 4-hour ambulance ride to one out-of-state hospital).

Seen in 5 different hospital systems in 3 different states.

Undergone many more pokes, tests, draws and scans than anyone should have in a lifetime.

Not In Her Head

After a dozen tests and appointments in another big hospital, we have confirmation on some suspected conditions, as well as some new diagnoses. Multiple doctors in two different state have been telling us that her symptoms were only physical manifestations of emotional trauma. (Once this theory was proposed by one doctor, everyone who encountered her chart thereafter, jumped on that premise. We’ve been battling this mindset for months now, while watching our daughter continue to physically deteriorate, growing worse by the day.)

We would not settle for the “emotional” answer, even when a panel of a dozen doctors in one hospital room included a passionate young intern who fought tears as she proclaimed, “Until you can believe, and help your daughter accept the fact, that there is a psychological basis for her illness, she will not, can not, start to get better!” Let it be known that she has at least four document-able PHYSICAL health issues at play here! I am so thankful God did not allow us to settle for that garbage-can explanation!

How To Pray

If you are praying with us, we are specifically asking God to continue to give our current doctors great wisdom and insight, and to bring hidden things to light. While all the guys stay here for work and school, I will fly R. back again in another week and a half for even more testing. (My husband’s job has been so flexible in allowing Rick needed time off and the ability to work remotely. Thank you also to family members who are significantly aiding with transportation and medical costs!)

Less than 24 hours after our last appointment and diagnosis there, our oldest was tentatively diagnosed, back here at home, with a separate serious issue. We are in a 2-week testing phase to see if we can confirm his working diagnosis, or if a new approach will need to be taken with his care. If he has what his doctor thinks it is, the answers are hard, but we would finally know what we are up against. If he doesn’t respond favorably to treatment trials, we will wave to expand the search into other specialty field and do some deep digging!

God is good ALL THE TIME. We are in a wild storm, but my Jesus walks on water and will hold us every step of His perfect way!

First Adult Job

With all else going on, I will be starting a new job on Monday morning! Because we were getting so many emergency calls from the school each week, we got to the point, around Thanksgiving, that any time our daughter was on campus, I would also be at the school. My days were typically spent sitting in the front office or clinic all day, volunteering however I could, while waiting for medical code calls to be announced every time our girl fainted.

By being on campus, I was immediately available for feedback as the school’s emergency response team evaluated each situation to consider ambulance need. After a few weeks on campus, I was asked to apply for an open position. I soon filled out my first job application in over 20 years (for a job I did not get offered back then). My interview was shortly before Christmas. It is exciting to have a reason to be there each day, other than waiting for my girl to go down!

 

 

Service Dogs

Last weekend we met with a women from our church who, for half of her life, has dealt with similar fainting issues  to our daughter’s (recap in next paragraph). R. has a service dog to detect her coming faints and give her time to get safe before loosing consciousness. We visited R.’s house for about two hours. Half an hour after we got there, the dog got frantic and rushed up to our girl, licking her face incessantly. Within a minute of this sustained behavior, our girl fainted! It was astounding watching this dog exhibit her God-given perception to know our daughter was about to go down!

Our 15-year-old has fainted about 30 times in the past three months. We are headed to another out-of-state hospital in a few weeks and could be there anywhere from about 3 days to 3 weeks. We have a theory, but are headed to a top autonomic specialist to try and get this officially figured out, since, so far, she has been through three local hospitals plus two really large research hospitals in the next state over, all without clear answers nor help.

If God wills to open a HUGE door that only He could, we also desire to take our 19-year-old for evaluation by the same doctor. Our son too has been quite ill over the past month, unable to attend almost any school, needing to resign from his job, and so fatigued he is unable to walk from bedroom to kitchen or drive half a mile! We are working with the hospital to try to get a last-minute cancellation spot, but know that the flight itself has the potential to further damage his health, so we are asking God to do what is very best and safest for him.

We’ve spent the week researching various kinds of service dogs, along with the added twist of severe dog allergies throughout the family.

We think we have narrowed down our preferred dog breed to one of a few kinds of Doodles (half Poodles). We are looking for a medium, or standard (huge) size, to be able to physically protect our girl. And the dog needs to be 2nd generation (grandparents are one dog such as a Retriever and one Poodle, while it seem that parents are Both 1st generation Doodles or a Doodle and a Poodle).

Thanks pixabay.com/en/labradoodle-doodle-dog-dog-park-1696004/

Poodles are hypo-allergenic (because they have hair rather than fur and shed little) and are highly intelligent dogs. In and of themselves, Poodles don’t tend to be easily trained, thus aren’t the best candidates as service dogs.

Mixed with a Golden Retriever (for a Golden Doodle), a Labrador Retriever (Labradoodle), or any one of several other breeds, these half Poodles maintain high intelligence levels, while taking on the traits of easy train-ability found in their Retriever parents. Doodles make ideal service dog candidates and, by second generation (some breeds of Doodle, bred back with Poodle), become hypo-allergenic.

No Guarantee

Faint-detection cannot be taught or trained. A dog either has it or it doesn’t. In our single week of research, it seems that of these “ideal candidate” Doodle dogs, only an estimated 25%-40% are born with an innate ability to warn of a pending medical event. Most studies seems to have been done on seizure- or diabetic-detection dogs. Syncope (fainting)-detection dogs, through formal services, take 2-4 years and between $20,00-50,000, to obtain.

Because we really can’t afford to wait for (or the cost of) a formally certified dog, we are visiting humane shelters, pounds, and pet stores. The dog that literally has been a life-saver to our new friend R., who knew when Ruth was about to faint, was from the humane society!

Yesterday we spent half an hour in a pet store with a 2nd generation Labradoodle puppy that was adorable, but when Ruth fainted (pretty much a daily occurrence right now) there, it did nothing dramatic to clearly indicate a coming faint, so we will keep looking. Perhaps the dog was too young to differentiate spastic puppy behavior from faint-alert. Before we spend $3,000 on a designer dog, we have got to know it can identify her faints!

Once we find that dog, we can start the lengthy and pricey process of formal certification training that would allow her to take him in public places like her school. Even having a dog like this just in our home will be a huge blessing, but once service training is initiated and the dog can accompany her everywhere, we hope to significantly cut down on faint-related injuries (seven Emergency Rooms, with five ambulance rides, since this all stated just 3 1/2 months back).

 

Hospital Blankets Make Great Tree Skirts

I have started volunteering at our daughter’s high school each day and staying on campus for the entire seven hours. (Her school staff has been AMAZINGly supportive through this crazy medical journey!)

Writing is, by default, taking a sideline in my life for a bit. I am, however, over-the-moon to announce that Deb Gruelle and I will be team-teaching a workshop at Mount Hermon in April. I will also be leading a course entitled Praise, Worship, Jubilee! as we celebrate the 50th anniversary of this conference. If you have ever dreamed of writing, I so hope you will join us.

Life is crazy, but we do have a pre-lit Christmas tree up. My hubby and youngest set it up as a surprise one Saturday in early November.  I don’t have the time, energy, nor gumption to decorate it this year, so my husband bought 4 dozen candy canes and our 12-year-old had fun hanging them while he was home sick one day last week.

For a tree skirt, the white blankets they sent home wrapped around our girl during her latest ER trip (we are now at 6 ER visits, several via ambulance, in the past 2 1/2 months) made a lovely addition. Setting out our new Advent Calendar next to the tree will probably be the extent of this year’s decoration.

Her medical record says she “pulled her hair out,” but I can testify she lost half of her hair volume (in patches as large as 4×6 inches, as well as in showers of individual strands), all within 36 hours. She was not pulling it!

We shaved her down to a tiny fuzz of hair, since what she had left was so patchy and stringy. Just a month later she went into the shower with hair and came out with a dozen new bald patches! Since her hair was not really even long enough to grab that second time, she couldn’t have pulled it out if she wanted to.

We are waiting to see an autonomic specialist at a major hospital in Arizona, and hope to find answers there. We have January appointment currently scheduled. A large chunk of my daily time is spent in multiple calls to this clinic, waiting on hold, trying to find out if any new cancellation slots have become available over the past two hours, in hopes of getting to fly down to be seen before Christmas.

We are tired.

Yesterday’s advent reading greatly blessed my heart. It is perfect for my reader-friends in our In Darkness Sing community:

“The people who walked in darkness have seen a great light; those who dwelt in a land of deep darkness, on them has light shone.”
Isaiah 9:2 (ESV)

It isn’t about the frills of Christmas. When you strip joy down to the most basic of elements, this season is about the Hope brought to earth by One Baby.

 

 

 

Crisis Amidst Crisis

If you’ve been following along on our 15-year-old’s medical saga of the past two months, you know things are rather crazy in our home. I’m sad to say that this faint-free spell only lasted a week. We’ve had code blue calls from her school the past two days in a row again.

Our nerves are so tightly strung that the phone can’t ring or a door open without us physically jumping, every muscle tightly wound, ready to respond to the next medical crisis. Rick called to say, “I love you,” yesterday, and instead of answering the phone with my typical “Hi Handsome,” I saw his number on the screen and grabbed it with a panicked, “Is everything OK?” God is the anchor we are clinging to, but this is HARD!

Cast all your anxiety on him because he cares for you.

While our 18-year-old was driving our girl and me to her doctor yesterday, our son nearly had to pull over the car because of sudden, rather intense chest pain and trouble breathing. He got us safely to her doctor, I called my mom to come take over with R., then I rode along with J. who was able to drive himself to urgent care two blocks away. A breathing treatment did wonders and our oldest is now carrying an asthma inhaler. So thankful this medical issue was quickly addressed and had a cut and dry solution!

When anxiety was great within me, your consolation brought me joy.

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)

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