Category: General Articles (Page 1 of 3)

In The ZONE

Our daughter wants this to remain a big surprise for her friends, so if you know anyone (even your own student!) in the McDowell youth group, please keep this news hush-hush for a few more weeks…

In 5 days, Rick and I will be flying down to Ar-i-ZONE-a on a house hunting mission. Yes, we are moving. We don’t know how long it will take to close escrow on the new house, but we are madly packing in order to be ready as soon as it does. R.’s goal is to simply show up down there and see friends’ reactions.

We have counted 40 unique faint-like events in the 28 days R. and I have been back from AZ…

…even though her elevation medication has been upped to 8 times the dose that brought us 9 glorious days of stability in March. Upon returning to elevation, my own asthma (that was quiet all summer) and tachycardia / POTS (that have been well controlled for over a decade) have been haywire!

We have tried HARD to stay in Reno. God has made it clear, repeatedly, that He has a new season in store for us near Phoenix. I like to think of this new chapter in our lives as our “up from the ashes” season of hope, joy, and restoration.

We are exactly two weeks out from being a full one year since that first school phone call when R.’s elevation-induced fainting started.

Even with a 2-month break down in AZ over the summer, we have now documented 125 events this past year. (Likely many more than that, as we were initially not recording drop episodes, having no idea how much of a “thing” they would become!) We have only learned in recent months that she also often faints while already asleep, so we have no way to know what her true number of events have been this year – I imagine she is likely somewhere nearer to 300.

We are excited to be moving near several world-class medical facilities that will be available to 16-year-old R., to myself with ongoing post-stroke follow-up needs, for our 19-year old who will be flying down with grandparents again to see more doctors, in between our house hunt and move, and simply for great day-to-day care for Rick and our, thankfully, healthy 13-year-old.

We are blessed to have already found the church home where we have been plugging in every time we’ve flown down to Mayo Clinic. R. has been enjoying the youth group on every visit we’ve made to AZ since January, and has already applied to serve on the student leadership team there for this school year. I spent the summer meeting weekly with the prayer team. We were both blessed to join the youth group for summer camp in July.

Prayer Needs:

Rick and I are asking God’s favor on our trip next weekend, that He will lead us to the exact right house, in the best location to accomplish His purposes in our move, at a fair price we can reasonably afford. We are specifically praying for neighbors and school district, along with specific needs (and some wants) for each family member.  Also that the timing of our offer will work out perfectly (the housing market is insane down there, and buyer competition fierce) and that the current owner would be inclined to favor and bless us in the transaction.

Both sets of our parents live here (mine 5 minutes away, his 1 hour). We’ve been in this house almost 15 years now. Little J. has never moved before, R. and older J. have only moved houses once, right here within Reno. Rick has lived outside of a 2 1/2-hour radius of his parents’ house only during his college years. After a lifetime as an MK (missionary kid) moving, often across international oceans, about every 2 years of my entire childhood, this is my first home with deep “roots” that have been established in the Reno community for nearing 22 years. We all need your prayers as we find our new fits in a new state!

Let’s Help Each Other!

If you are local to northern NV and want to get together before we move, please come help pack a box or two so that we have a chance to visit! Also, if you are looking for an antique piano, outdoor playhouse and slide, dressers, or other furniture, we can likely fix you up (for free).

Our current house is listed on Zillow, in case you know of any family that needs a single-story house with 4 bedrooms plus a den (currently being used as a 5th bedroom, but no built-in closet) and 3 1/2 baths, in south Reno (Curti Ranch). We would love to talk with you and receive offers before we list with a realtor, as maybe we can save us both some money by eliminating those fees. 🙂 This is a unique all-on-one-level home that we will be very sad to leave. We’ve invested so much time and love and made some amazing upgrades like wood plank-look tile flooring throughout the kitchen / family great room, and reclaimed 1800s barn wood beams used to build the mantel of our custom fireplace. Finding a comparable replacement for this home will be very hard!

 

Update on Our Kids

What an eventful month!

Daughter:

Our 16-year-old and I spent two weeks in Arizona, five days of that as a hospital inpatient, three days doing daily hospital pain IV infusions on an outpatient basis, and a bunch of time running from one outpatient specialist to the next. We left with a long explanation of the “perfect storm” of exceedingly rare conditions and circumstances that piled upon one another to cause our past six months of terrifying medical issues.

Why?

In short, R has a “spot” in her brain that is stable, non-aggressive, and has likely been there for years (possibly since birth). As her body has grown and changed, the migraines she had had at least since toddler-hood, have been exacerbated by altitude, so when she started regular drop episodes (faints) in September, this was actually a very rare migraine complication!

In fact, every one of her symptoms, up through temporary (minutes-hours) deafness and blindness can be accounted for by migraine, according to her neurologist at a major medical center. The migraines have messed havoc with her autonomic system, so the prior diagnoses of POTS and autonomic nephropathy stand, we just finally can add the “why” behind these diagnoses.

What Else?

That brings us around to elevation. We only live at 4,700 feet above sea level, not like Denver, the “Mile High City” or anything. She was conceived, born, and has lived her whole life here. So why the sudden onset of symptoms of this magnitude?

According to our doctor, who treats astronauts for both NASA and JAXA (Japan’s aerospace program), as well as mountain climbers who brave heights like Mount Kilimanjaro, their practice starts seeing chronic altitude sickness in folks who live at as low as 3,000 feet. He measured R’s blood gasses and found they were scarily out-of-balance, even a week and a half after being down at low altitude.

The poor kid has likely never handled this altitude properly, and as her body has grown and changed, her blood gasses finally became so imbalanced that the only way her body could signal the need for help was to take her migraines and create a huge mess. Pair this with that brain “spot” and a couple other more complicated issues, and all her symptoms are accounted for.

What Now?

We came home from this trip both on higher doses of her existing migraine medication, and on high altitude medication designed to bring her blood gasses back into balance.

She has not fainted once in the nine days since she started the altitude treatment. Her eye sight and hearing (the longer stretches accounted for by altitude) are continuing to improve as well.

Grace:

Folks, with both blindness and deafness, R was one step away from coma, two steps away from death. As my pastor put it, “there was only one direction this thing was going.” With cortical symptoms like this, the organs and nerves are still fully capable of function, but the brain looses the ability to process or recognize the information it is receiving. The spontaneous regaining of her sight and hearing on February 18, was all God!

We missed her morning dose of medication yesterday and she had a hard (head-achy, nauseous, moody) day and a horrific night last night (hardly able to sit up in bed, much less stand or call for help). Her pulse never dropped below 120 between 11pm and 7am, with spikes as high as 159! Thankful for the pulse monitor her doctor has her on recording her nights now.  There is now no doubt, whatsoever, that these new meds are making a tremendous difference!

Oldest Son:

In the meantime, my in-laws accompanied our 19-year-old all the way back to Rochester. He received a diagnosis last week – Chronic Fatigue Syndrome, but he tests clear of all the viruses I chronically carry that trigger my CFS. While I have astounding results with anti-viral medication, his battle has no medication available.

We continue to pray for renewal for our first-born. J’s and R’s symptom are quite different, but in many way he is more debilitated than his sister, unable to attend church, job, school, or drive a car. He has been physically devoid of strength, often unable to walk through the house from bed to kitchen, since Thanksgiving. We plan to have him tested by our high altitude doctor in July, just in case there is any causative overlap for our son.

Mount Hermon:

I will be leaving for Mount Hermon Christian Writers Conference tomorrow morning. I’m SO EXCITED! I’ve been counting down to this, our 50th anniversary, for two years now.

A little over a week ago, it was looking like I would have to cancel because of R’s health. Later that day, we started on new meds and our life made a dramatic change for the better. I will be teaching a workshop on Praise, Worship, Jubilee! and co-teaching another workshop, on writing critique groups, with one of my dearest friends, Deb Gruelle.

Prayer Needs:

  • Rick, as he does the “single dad” thing for ten days (the conference itself doesn’t start until Friday, but Deb and I are spending a couple days together before hand, because we haven’t been able to work together on our presentation yet, due to all my medical trips over the past six months, plus travel days).
  • My older kids as they struggle with health issues.
  • R and younger J as they return to school on Monday, after spring break. Since Thanksgiving, I’ve gone to R’s school every day so that I could immediately respond to all her medical crises, so it’s a stretch for me to not only not be at the school, but to be out of state.
  • Deb and I as we prepare our workshop, travel, and present. Physical strength, protection from illness, mental clarity, spiritual receptivity to God’s leading.
  • For God’s Holy Spirit to work mightily throughout the entire conference and in the hearts of all who attend.

Twelve Days

We have been living our miracle for twelve days now. Yes R. (age 16) is still sighted and hearing!

She can laugh at family jokes again. She can talk on a telephone. She can bake AND fully clean up after herself. We are so thankful!

We had hoped the faints would fully resolve with the return of scenes. Sadly, we had another episode at school this week, dictating another ambulance ride and ER trip.

The unique thing about this event was that she had enough warning to try to get herself safely to the floor before loosing responsiveness. She was aware that her ears stopped hearing normally and that her vision went dark, so she froze and started getting down to the ground.

The school police officer watched her go down and was excited that she only had the very last little bit of that process as an involuntary fall, so she didn’t hit the floor hard, as she normally has, and there was no head trauma this time. (She has had three concussions since early September.)

Thankfully, when R regained awareness ten minutes later, she was sighted and could hear again. We went to ER anyway, because of a prior agreement with her neurologist. Additional testing told us yet one more thing we now know that we are not dealing with.

We have now exhausted every local testing possibility anyone can think of. We know many, many things that are not our issues. These newest symptom developments have provided enough clues that new out-of-state specialists are now joining our investigation.

Since regaining her scenes, R has had a chronic migraine (for nearly two weeks – ouch!) so my husband will be picking up new medication from the pharmacy today, for us to try tonight at bedtime.

We also got new glasses last weekend and learned that while she has enough sight to function now, and her eyesight can even be improved with corrective lenses, she is still only correctable to the “legally blind” threshold of 20/200. She is also now “color-deficient” (color blind) in half of the color spectrum.

We had already started suspecting much of this, as she needed to be very close to large print, in order to read. And we had been having several unusual color-related conversations leading up to her eye exam.

R. thinks mustard yellow is a beautiful soft shade of lemon yellow. She thought she was “mis-remembering” what a lot of different colors looked like when she kept getting two shirts confused. When she could not find a large green letter on a highly-contrasting peach background, her full color-spectrum was tested, twice, and found lacking on several levels.

Next week I will start making arrangements for current auditory testing. R certainly hears now, engages with the world around her again, but it seems she may yet be missing some of the finer details. I stood at the foot of her bed and tried to whisper to her this morning, and she had me repeat myself at normal volume before she understood.

I’m trying to rejoice in all the blessings, while we keep digging and fighting for answers. I’ve spent the day reading articles from a mom who writes about rising kids with chronic illness at Not the Former Things, and my heart resounds with so much she shares. I could list several links here, but I think Living In Fear Of The Next Bad Thing probably is the best single article I can link to.

There have been so many Sunday night church services where we’ve gotten called out to the youth group room for our daughter’s medical events. Between church, school, home, and life in general, we’ve documented 43 collapses since Sept. 8 (and may have failed to record a few more!), so I sat in church last Sunday night with my hands clenched, heart pounding, and legs ready to spring into action if there were another crisis.

It took my husband sitting down to pray with me for several minutes before I could calm my mind enough to offer God a sacrifice of praise in the midst of the fear-storm. In His faithfulness, God replaced my panic with a heart ready to enter into worship and receive the message he had for me during the sermon.

Is R all better? No.

However, there is wild improvement, in vision, in hearing, in potential medical direction, in frequency of faints – only three in the past four weeks, since implementing the Mayo POTS faint-reduction protocol. (We have seen up to four episodes with 24 hours, and daily, or an least several per week, were our normal frequency before a month ago.)

Now we are asking God for great wisdom, to direct our steps toward the next doctors who can help us figure out the root cause of her autonomic dysfunction and sensory issues. Actually, our first request is simply for full restoration, if that is His plan. Thank you for your continuing prayers!

J., our 19-year-old, who have been ill (different symptoms), up and down, for nearly two years now, with this round keeping him home-bound and primarily bed-ridden since late November, seems to be slightly improving again now. He is still quite ill and local doctors have also run out of ideas for him.

The current plan is that I will take R. back to an Arizona hospital later this month. J.’s grandparents will accompany him to Maryland for an intensive week of medical testing shortly thereafter. And Rick will stay home to keep our youngest in school, as he keeps working his job that God is using to provide our health insurance benefits.

When R. and I get home from Arizona, I’ll head out to California to attend and teach two workshops at the Mount Hermon Christian Writer’s Conference. God closed the door so that I didn’t go last year. I am so eager to be back with my Jesus-loving word nerd friends again this year, as we celebrate our conference Jubilee! Won’t you consider joining us? (If you go, please let me know and register as part of the Reno LifeWriter group, as we are getting close to earning a group discount.)

Miracle

Our daughter got both sight (blind since late September) and hearing (deaf for the past month, since January 14) back around 4:30 this morning (Feb 18). Not even a week ago I was sharing how we have been praying for this!

She yawned and her “ears popped” and her “eyes popped”.

The eyesight is still a bit dim (and quite blurry, but she has worn glasses since second grade and her glasses prescription seems to have significantly changed again). We don’t know if her scenes will fade again or not.

But the massive migraine that happened in conjunction with restored sight/hearing gives us a major new clue.

Praise the Lord!

It’s been an eventful day. I really haven’t slept much in the past 13 1/2 hours since R. burst into our room!

I also started with a new physical therapist who is both chiropractic stroke- and EDS-literate (he has EDS himself!) this morning. MyPT intake interview lasted an hour and a half. Boyd was SO KIND and GENTLE and ENCOURAGING.

He warned me I would feel run over by a truck the rest of the day, and I do. He hardly even touched anywhere other than my shoulder, mostly just coaching me on proper head and neck and eye movements to address stroke deficits, yet I was so dizzy and sore by the time my hubby drove me home, my teeth hurt! Yet I am looking forward to going back Friday. I anticipate huge help as a result of this new partnership.

The most encouraging words he said to me was that I was “so brave” coming to him to help with physical therapy for my severe post-stroke neck pain, after what I endured seven years ago on a very similar looking table. Having the reasonableness of PTSD acknowledged in that situation helped so much. Just a year ago, I wouldn’t have been able to emotionally tolerate the kind of physical therapy I so need, and finally pursued today.

Towel

My daughter went blind and deaf this past fall. It is a steep learning curve for our entire entire family to figure out how to operate under this new reality.

Doctors say her sensory loses should be “temporary,” but no one knows what that means. We are past both “days” and “weeks” and are hoping for resolution in “months” rather than “years.”

In the midst of this huge unknown, we press on to forge a new normal within these parameters. One interesting experience has been cleaning.
We are trying to give R as much adult-like freedom as possible, so we allow her fairly unlimited use of the kitchen. We strive to hang back and just stay ready to jump in to help prevent injuries, watching intensely when fire or sharp objects are involved.

Bless her heart, our girl truly does try hard to fully clean up her messes. But I am currently spending 2-3 hours every 4 or 5 days, deep cleaning all she has missed because she could not see, nor hear verbal instruction about messes.

When I try to explain what R is missing, there are many tears, usually some anger, and we have to wrestle through self worth and belief that she feels we don’t think she is “good enough.” We had a long “chat” (in addition to hand-spelling everything, a friend recently discovered she can feel word vibration patterns through bone conducting head phones, with a fair level of accuracy when we speak slow and concise, so we can now use the telephone as another tool) last night, so hopefully the kitchen will get easier on both of us! It is so hard to express what needs to happen without hurting her in the process!

Since going blind, yellow has become R’s favorite color. In her memory, her mind’s eye, it is “the color of happiness.” She asks the color of nearly every object she encounters, and if something is yellow, she is delighted.
She was given some lemony yellow towels for her 16th birthday last month. They are a very light in shade, like butter, but bright in intensity, like sunshine.

Towels

Within a couple of weeks, her new towels were stained with streaks of black eyeliner, all colors of eye shadow, flesh-toned makeup, and more. I tried not to let it bother me, but it made me very sad.

So I said many prayers and dug out every stain treatment product buried in the dark recesses of my laundry room cupboards. While I did discuss using clean towels only on already fully clean bodies, I decided this specific issue did not need to turn into a confrontation that would make her feel inadequate. I quietly set to work, hopeful that I could at least improve all but her washcloth (that seems utterly unrecoverable).

After much effort, her entire set of bath towel, hand towel, and even wash cloth now are stain-free and look brand new again. R never need know what her inability to detect towel stains truly costs me.

It is that way with God. There are times His gentle corrections hurt and feel suffocating, leaving us feeling less than. We are doing our best yet feel like all those “shall nots” that trip us up are only meant to tear us down.
What we cannot see is all we are spiritually blinded toward, ignorant about. We do not know all the times and ways God is working behind the scenes to accomplish our freedom.

Right now we see darkly [reference] but one day our joy will be complete as we see Jesus in all His glory. Just as I will delight in fighting to keep those towels looking new until R can see them for herself for the first time, our LORD takes great measures to bring us good gifts [reference].

What’s Eating You Up Inside?

I wore my favorite red high- necked sweater. Over the sweater I wore a beautiful, large crystal-cut heart necklace. Under my sweater, unseen by anyone, I wore a second heart necklace, one of solid metal and inscribed with the words of John 15:13, “Greater love has no one than this, that he lay down his life for his friends.”

We started by talking about thoughts that came to mind when hearing the words “consume” or “consumed”. Answers varied from eating and drinking, to living in a “consumer-driven” society where we practice “consumerism” of material goods. I then asked for input about what kinds of things we can be consumed by or that consumes us. The first answer was “fire,” followed by more of an understanding of what I was getting at: all-consuming goals, passions, ideas, anger, fear, etc.

I then pointed to my crystal necklace and talked about the ways we can strive to look beautiful on the outside and reflect a good image to the world around us, just like the facets on this necklace reflect beautiful colors and light. To look at most of us you might think that we “have it all together.” But if I take off my necklace (as I did while saying these words) and hold it off by itself, we can see that all that beauty is just outward and that inside there is nothing there but plain glass. Sometime what we portray to the world is simply a disguise for the fragile emptiness we are feeling inside.

We all have different heartaches. Yours may be longing for someone to love or be loved by. It may be seeking fulfillment in an unfulfilling job. It might be trying to make your body look differently than it does in order to fill that void in you heart. For me it was a combination of infertility and losses, along with chronic health issues, that lead me to the point of desperation and even contemplating suicide. No one could see that lonely emptiness inside, but I knew it was there. I was consumed by the pursuit of motherhood and my feelings of failure as a woman because I couldn’t get there. The heartache and grief consumed me every day and I felt abandoned by God because it seemed that He didn’t even care.

Many of us know the verse John 3:16, “For God so loved the world that He gave His only begotten Son, that whosoever believes in Him should not perish but have everlasting life.” God made this verse very personal to me in the midst of infertility when I realized that “God so long to call me His daughter that He allowed the death of His only biological son to pay the price of my adoption.”

Thankfully, how I may “feel” about God doesn’t dictate reality. Lamentations chapter 3 is a long book of heartache about all the things this author suffered. But hidden right in the midst of his complaints, he dramatically shifts gears for a few verses and boldly proclaims, “Yet this I call to mind and therefore I have hope: Because of the LORD’s great love we are not consumed, for his compassions never fail.”

While I was busy feeling overlooked by Him, He had already been going out of His way to prove the opposite to me. What is the value of something? It isn’t the cost of an item as much as it is what someone is really willing to pay. There are many things I don’t buy because the price tag is higher than I feel the value to be. But God placed the ultimate value on me when He choose to pay the price of His Son’s life to prove His love for me!

If you are feeling empty and fragile and wondering about God’s love for you, He has proved it better than any knight in shining armor ever could. John 15:13 is engraved on this necklace (as I pull the second necklace out of its hiding place and let it rest outside my sweater) and states that “Greater love has no one than this, that he lay down his life for his friends.” Just like this necklace is strong and solid and full of meaning, when I put my hope in God and trust Him at His word even when I don’t “feel” Him there, He fills that empty place in my heart with hope.

” Yet this I call to mind
and therefore I have hope:
Because of the LORD’s great love we are not consumed,
for his compassions never fail.
They are new every morning;
great is your faithfulness…
For men are not cast off
by the Lord forever.
Though he brings grief, he will show compassion,
so great is his unfailing love.“

-Lamentations3:21-23, 3:31-32 (NIV)

(c) Jennifer Saake, 2009

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!

 

 

Not What You Think

Rick took the day-shift in ER yesterday. I traded places to spend the night in the hospital roll-away cot last night.

In bed, IV penetrating left hand, not our daughter for once, but the 19-year-old!

In the meantime, our girl’s longest faint-free record since this all started on Sept. 8 was reached yesterday, 11 days, 2 hours!

She proceeded to faint again tonight too.

This afternoon she lost more hair.

The book that’s become a family tradition every Christmas closes with these words:

“Surely,” the woman spoke softly, “the Lord lives this day.”

“Surely,” said Father, “the Lord does live this day, and all days. And he is loving and merciful and good.”

…To these truths we cling!

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