Addie Update: Living with an Angel for 3 Years

People often ask me, "How's Addie?" followed by other questions.  I've posted their questions and my answers below to update you on our lovely angel Addie!

Q: How old is she now? Addie just turned 3 years old!

Q: Can she see?  Addie is bright-eyed!  Her ability to see is unknown.  While her eyes seem to function and do function on a physical level, her brain is not connecting the dots between vision and integration into daily life.  She does not pass any eye exams. She continues to receive services through the Utah School of the Deaf & Blind. However, sometimes she just stares at us, so we like to think she is seeing us.

Q: Can she hear? Addie is profoundly deaf and fails all hearing tests. Sometimes, though, we think, "She heard that!" But--we do not know if she's responding to other senses that are more highly developed due to her lack of vision/hearing.

Q: How big is she? Addie is 28" long and 13 lbs.  She struggles to gain weight due to many energy expending seizures and her struggle to breathe and swallow secretions or aspiration issues.  Basically, it's like she is continually exercising.

Q: Is she potty-trained? No--this little tyke is my "baby forever"!  She is like a living doll that I get to dress, change, bathe, feed, and put fancy bows in her hair. 

Q: Does Addie still have seizures?  Yes--on a good day, she has about 20.  On rough days, about 60. 

Q: Have you tried cannabis?  Yes--but not consistently, so we haven't seen long-term effects of CBD use for her. 

Q: Is she on any medications now?  No--Addie is drug-free and lovin' it! She's very present with us now that her mind isn't altered by the prescription drugs. We love it too!

Q: Can she talk? Addie does not verbally communicate.  She has learned to cry somewhat in the cutest, most adorable manner.  Think of a tiny puppy dog whimpering, and then you'll get the feeling we all have when she cries.

Q: Is she sleeping better at night?  Yes and so am I!  After 3 years, I think both Addie and I mostly get about 5-6 hours of sleep, instead of 3-4. She's sleeping for longer stretches at night, not needing to wake up for food. . . which may be backfiring on her weight gain . . . but how nice it is to sleep without as many interruptions. Beep, Beep, Beep!

Q: Can she eat anything by mouth? No--Addie's seizures prevent her from knowing how to swallow without it going into her lungs.  She continues to be g-tube fed.

Q: Can she move or walk or crawl? No. Addie is immobile and depends upon us to reposition her frequently throughout the day to prevent bed sores and to just keep life interesting for her.

Q: Is she still on oxygen? Yes--when her oxygen is off, her oxygen saturation drops. She cannot maintain her oxygen levels without assistance.

Q: Can Addie play with toys? We like to try.  They often stress her out.

Q: Do you have anyone to help you take care of her?  A wonderful respite nurse comes for 3 hours a week. Addie's grandpa comes and holds her frequently so I can catch up on household tasks. 

Q: And finally, are you just worn out?  No, the Lord sustains me.  I've been able to continue all that I did before Addie was born and more...just at a slower pace.  Addie also gives back more to us than we ever give to her.  She is so sweet; her spiritual presence is very strong.  She is super cute and we love the little evidences of progress she is making. Addie fills our homes and hearts with the light of Christ and draws us nearer to Him. We are so blessed by this precious gift from heaven.

P.S. About 5 years ago, as I read the scriptures and attended the temple, I came to realize that as women if we do not mother all life on this planet, who will? I started this blog to do something about promoting life by bringing awareness to abortion.  In the busyness of motherhood, I only posted a few things initially.  Then Addie came along, and this blog became a way to update others on her progress & her precious, valued life.  She has taught me so many things.  I've written one of those lessons in a recent article titled Full Circle. In it, you'll see how Addie has made this blog come full circle and find ways to support every precious life coming to earth. I invite you to keep reading . . . .

FULL CIRCLE

About 5 years ago, I started the blog to do something about abortion.  As I read the scriptures and attended the temple, I came to realize that as women, if we do not mother all life on this planet, who will?  Thus, themotherofallliving.blogspot.com was born to promote life. In the busyness of motherhood, I only posted a few things initially.  Then Addie came along, and this blog became a way to update others on her progress & her precious, valued life.  She has taught me so many things.  One of her lessons is below and it makes this blog come full circle for me. Photo by Ava Sol on Unsplash

Find this entire article with its sources and documentation at this link:

FULL CIRCLE

I often recall reading Shirley Jackson’s haunting short story “The Lottery” in junior high. A normal village routinely comes to the town square for the annual lottery.  After the officiator reads the rules, each household head draws a paper from the lotto box. One person draws a black dot. Tickets for every member of his household are then returned to the box. The family member who draws the black dot then walks to the center of the town square to be stoned by their remaining family members and townspeople. Though there’s talk of abandoning the lottery in other villages, the elders of the town emphasize that those villages are a ‘“pack of crazy fools; listening to the young folks, nothing’s good enough for them. Next thing you know, they’ll be wanting to go back to living in caves . . ..“‘

And so the village persists in a horrifying tradition year after year, decade after decade, century after century, in order to have a  “bountiful harvest” in their town. Stories like this have always caused me great pause: are there any traditions we hold to that are never questioned but that cause great harm to some in order to preserve others?

I’ve often prayed to God to show me what false traditions I linger under. The answers have come in startling, awakening ways.  One such experience came when Addie lived in the Newborn Intensive Care Unit (NICU) for four months. After a few weeks in the highest level of care, the nurse asked permission to give Addie her immunizations.  If my daughter had not been lingering between life and death, I wouldn’t have thought anything about it and would have consented.  But there, in that room of monitors and beeping machines, of 24-hour nursing care, of a respirator breathing for her, of tubes and cords running all over her little body, her bed, and her floor, I zoomed out and took a broader look at something I’d never seen before. Why, I wondered, are they even asking if I’d like to immunize her when we don’t even know what is wrong with her and whether or not she will live?  

I decided then and there that I needed to do some research.  My basic question was, “Should we be giving immunizations to sick, seizing, premature infants? The next day, I went to the library and picked up books for and against childhood immunizations. Then, as I sat at the hospital pumping out milk for the donor bank (they wouldn’t let Addie have my milk), I read the opposing arguments. Very quickly, I came across a term in the ingredient list called “human diploid cells.” What on the earth are “human diploid cells?” I wondered.  And that’s when I went down a rabbit hole.

In a nutshell, human diploid cells started from aborted fetuses in the 1960s. If you do research on human diploid cell lines on the internet, you will find the following quote or derivative of it: 

“In total only two fetuses, both obtained from abortions done by maternal choice, have given rise to the human cell strains used in vaccine development. Neither abortion was performed for the purpose of vaccine development.”

I can tell you that this is a lie intending to deceive and assuage the public! The likelihood of scientists getting their experiments to work on two fetuses only would be highly random.

I did not believe this statement, and so I dug deeper.

One-hundred and six aborted babies later . . . and counting . . . .

You don’t have to take my word for it. Here are some of the quotes from the scientists

themselves working on developing vaccines from fetuses screened, aborted, and utilized

specifically for that purpose (see the entire expose on this subject, which is my main source

for this information at https://cogforlife.org/vaccines-abortions/ and the citations for the

following quotes here: FULL CIRCLE ).

“The isolation and characterization of human diploid cell strains from fetal tissue make this type of cell available as a substrate for the production of live virus vaccines. Other than the economic advantages, such strains . . . make the consideration of their use in the production of human virus vaccines a distinct possibility.”

“This fetus was chosen by Dr. Sven Gard, specifically for this purpose. Both parents are known, and unfortunately for the story, they are married to each other, still alive and well, and living in Stockholm, presumably. The abortion was done because they felt they had too many children. There were no familial diseases in the history of either parent, and no history of cancer specifically in the families.”

“One of my duties as a young student in the laboratory in Stockholm was to dissect human fetuses from legal abortions and send organs to the Wistar Institute. Such material was the source of many important studies of cell lines at the Institute, such as Leonard Hayflick’s study of WI-38 cells.” 

“Explant cultures were made of the dissected organs of a particular fetus aborted because of rubella, the 27th in our series of fetuses aborted. This fetus was from a 25-year-old mother exposed to rubella 8 days after her last menstrual period. 16 days later she developed rubella. The fetus was surgically aborted 17 days after maternal illness and dissected immediately. Explants from several organs were cultured and successful cell growth was achieved from lung, skin, and kidney. It was then grown on WI-38. The new vaccine was tested on orphans in Philadelphia.”

Did you catch that? Let me expound. Mothers in Philadelphia, who had been exposed to Rubella,

were convinced by their medical providers, in collaboration with the Wistar Institute, to abort their

babies to avoid potential complications. It took 27 abortive deaths of babies before one of the fetuses

was found to be infected with the Rubella virus. Forty additional babies were aborted following

the finding of the live virus on baby number 27. In total, 80 babies were aborted to produce

the Rubella vaccine, including those made to create the WI-38 cell strain.

Hmn . . . 80 is way more than 2!  And don’t neglect the last statement in that quote above!

Children, with no parents/guardians to speak for them, were used as test subjects for the

new vaccine.  That’s an entire other rabbit hole that is an outrage of human decency, human rights, and human dignity!

The WI-38 cell line has now expired, according Dr. Stanley Plotkin, a scientist, author, and

vaccine development expert. These cell lines are not replicable forever.  Therefore, other companies

and institutions get financial backing to create new fetal  cell lines for the manufacturing of vaccines. Basically,

this is now a  competitive market. I’m sorry to add to the horror.  In order to acquire living tissue,

the babies are aborted alive and their organs are procured without anesthesia. The callousness

of the researchers makes my blood run cold. See for yourself:

https://www.youtube.com/watch?v=PN7FQCkiBp8

Are there other vaccines that utilize aborted fetal cell strains? Yes--nearly all of them.

However, some have ethical alternative brands thanks to the advocacy of Children of God for Life,

an organization bringing awareness to this vital issue. The ones for which there is no alternative

include the following diseases: MMR, Chickenpox, Acute Respiratory Disease.

The 2020 flu shot does not contain aborted fetal cell lines, but flu shots in the past have.

Some of the developing COVID-19 shots also include aborted fetal cell lines and some do not.

As the race to produce a vaccine comes to the finish line, you will have to read the label to

determine if the winner uses aborted fetal tissue.

You can also keep updated at  https://cogforlife.org/vaccine-overview/ .

I return to my original question: are there any traditions we hold to that are never questioned

but that cause great harm to some in order to preserve others? Is it right to sacrifice the life

of even just two precious children (if it were only two), let alone hundreds of babies to promote

the health of our society?  Is this medicine that would find approval in God’s eyes?  

What can be done?  Vote with your feet! Demand ethical vaccines. Join Children of God for Life,

follow and support their work. Educate yourself.  Share what you’ve learned with others.

I wish so much that I had done my research before I ever allowed my children’s arms

to be punctured and injected with immorally produced immunizations. My ignorance

has weighed upon me heavily. I thank God for opening my eyes to false traditions.  Now

that I am aware of the stone in my hand, I set it down.  I walk out of the Lottery, and I take my

family with me.  Better to live outside of the village, then to throw that stone one more time at

a fellow villager. Thank you for awakening me, Miss Addie!

Addie Update: 1st Quarter 2020 Closed Doors

From January-March 2020: 

Its Physician Season! And . . . we have some answers. . . kind-of.

First, Addie took another ABR test with Audiology. Previously, she'd flopped on two booth tests.  In the booth, Addie listens to sounds as audiologists watch for her to react.  Mostly, she just stared ahead.  Sometimes, she seized or coughed.  Since that was the only response, we marked those on her hearing chart.  As you can imagine, the results of the two booth tests were widely far apart.  One said she had mild hearing loss and the other suggested moderate hearing loss.  Either way, those diagnoses were better than profound.  However, questions remained as the disparity between the tests did not answer whether Addie could actually hear us.  Thus, we decided to pursue another ABR.  After 2-1/2 hours of testing, Addie gave us no response on any of the tones except for major seizing at the loudest tones.  At those sounds, the earpiece vibrated and buzzed in her ear.  Did she seize due to vibration or due to the loudness of the tone?  Either way, the audiologist deemed that hearing aids would not be beneficial to her as the volume would need to be turned up so high (think motorcycle or jet plane) that it would send Addie into a seizure.  And. . . no one hears during a seizure.

Additionally, the audiologist pulled up the full report of Addie's 2017 MRI and translated the findings for us.  We learned that Addie has something called "EVA" (Enlarged Vestibular Aqueducts) in addition to cochlear damage. In EVA, the canals holding the fluid that helps in balance are enlarged. Instead of reabsorbing the fluid as it comes and goes, the fluid builds up. Then, if the person injures or bonks his or her head, or has a seizure, the canal breaks and the fluid rushed out eroding the hearing structures.  This continual "bursting of the dam" eventually leads to complete hearing loss and it is irreversible.  We don't know if it impacts balance as well.  But how could it not?  Maybe that's why Addie always seizes and vomits her food . . . nausea from the world spinning all around her? Chicken or egg first--chicken or egg?

So, while Addie's hearing loss remains profound, we were able to close the door on hearing aids.  It felt so nice to finally have an answer!  We can now focus on therapies that we know are working.  With hearing aids, I could never tell if they were helping or hindering.  Sometimes Addie seemed very stressed by the feel of them in her ears. I never saw any definite hearing response.  It is hard to justify a $5000 purchase of something that may or may not be helping. 

A big thank you to the Utah School of the Deaf and the audiologist there, Christine, who helped us navigate this world for the past two years by loaning us hearing aids to try and all the other hearing services provided. How we love and appreciate you! And thank you to Natalie, an audiologist for IHC, who helped us with the ABR and educated us on the MRI results relating to the ears.

Next, we visited Neurology.  We met with a new doctor to get a different viewpoint.  She explained that the western medicine view of the brain offers three things: 1) drugs 2) surgery or 3) ketogenic diet.  We have had less than stellar success with drugs.  Surgery isn't an option for Addie--as her seizures are multi-focal (all over her brain--you'd have to cut the whole thing out!), and the diet may be an option for Addie (if her Mom can get over feeding her baby chemical nutrition and risking Addie catching every cold and flu bug that her siblings bring home from school. Currently, Addie has not had a serious bout of a virus, though one or more of her family members have been ill all winter).

 After this visit, we decided to pursue seizure control in this order 1) peripheral stimulation therapy as taught to us by Addie's chiropractic neurologist 2) CBD trial 3) ketogenic diet, and 4) drugs.  During the visit, Chris asked the doctor, "Would the therapies that work for kids with cerebral palsy work for Addie?"  The doctor responded, "She has cerebral palsy."  My heart went, "Wait . . . what?"

The doctor said that often this diagnosis is delayed until the child is 2-3 years old to see if they outgrow the global developmental delay, her previous diagnosis.  In Addie's case, after reviewing the MRI, she believes there is permanent brain damage that will impact Addie her entire life.  Put another way, the immobility of her limbs and neck are not due to seizures but to the three spots of white matter in the center of her brain as seen on the MRI. Thus, she changed Addie's diagnosis from "global developmental delay" to cerebral palsy.

That was a shock! And--I had to bury the hope that if we could just get Addie's seizures controlled, she would eventually learn to hold up her head and move her arms and legs--learn to crawl and eventually stand and walk!  Needless to say, I spent many nights this month crying myself to sleep over these closed doors.

Next we visited a new doctor with Pulmonology.  Addie's lungs were especially crackly that day and the doctor felt highly concerned. She watched Addie "go blue" when we removed the oxygen from her nose. She also saw Addie's clubbed toes and fingers and said affirmatively, "This is not normal!" Since Addie had not had any x-rays of her lungs since leaving the hospital, her doctor suggested we get a CT scan of her lungs to get a good view of what Addie is dealing with.  The doctor theorized that Addie has mucous pooling in her lungs.  She gave us a prescription for a nebulizer, steroids, salt solution to break up the mucous, and ordered a cystic fibrosis vest to beat the mucous out of her lungs. When we started Addie on the nebulizer and steroid treatment, her heart raced to above 200 bpm.  Her skin tone dropped to an ashen blue color. She became very lethargic and her limbs went cold.  This reaction caused the doctor to pause the treatment until further analyses could be completed.

We went up for the CT scan, and the results showed no pooling mucous; the lungs looked surprisingly clear for Addie. The doctor felt so surprised and said that Addie must be misdiagnosed.  It didn't make sense.  She sent us to a cardiologist.  We did a full work-up on her heart, with more ultrasounds, electrocardiograms, and the works.  Addie wore a heart monitor for 2 weeks that observed her heart rate, especially during steroid treatments.  In the end, the cardiologist could not find the cause behind Addie's excessive heart rate or her "blue" spells or her clubbed toes. No answers--surprise, surprise!  He said, "I'm a plumber; you need to see an electrician." He did say, she has an enlarged aorta that will need to be monitored & measured annually.  Lastly, he referred us to another cardiologist and then COVID shut down all appointments. So--the doors shut.

My mother heart told me that perhaps Addie's "blue" spells were due more to dehydration than anything else.  So I tested my theory by adding 2 syringes of water to her diet every day, and we have not had any more blue spells.  By small and simple things . . . . 

A Mother's Musings: Seeking Thy Pavilion

Photo by Jens Lelie on Unsplash

 

Stunning. That's what this silence has been. I've gone the rounds in my mind trying to seek the cause of what feels like being...

CUT-OFF.

When I try to emolliate my anguish and confusion, I try, “Well—maybe the heavens are silent because they’ve given me Addie.” Its true--her powerful spirit radiates through our entire home and does so much to calm and soothe me and anyone in her presence.  Still—she is not Father. And try as I might, nothing compensates for the loss of God.

NOTHING.

I've pondered the scriptures, and I've found too many instances of others feeling this abandonment to bode well for me.  For Adam and Eve, the record states, "and after many days" they received instruction (see Moses 5:6). For the apostles of Christ battling contrary winds on a violent sea, the Redeemer came in the fourth watch of the night, after observing their struggles from the shore for some time (see Mark 6:48).  Job's wife lost patience waiting for assurance from a loving Father. She expressed her hopelessness, "Curse God and die" (see Job 2:9).  Who can forget the discouraged plea of the Prophet Joseph Smith as he cried out from his comfortless prison, "O God, where art thou? And where is the pavilion that covereth thy hiding place?" (D&C 121:1). Lastly, the words of our dear Savior, "Eloi, Eloi, lama sabachthani? which is, being interpreted, My God, my God, why hast thou forsaken me?" (Mark 15:34), ring through the ages reminding all of us that sometimes seeming abandonment comes at the most inexplicable of times.

Well--I'm certainly no prophet, nor am I any scriptural hero, but the Lord is "the same yesterday, today, and forever" (1 Nephi 10:18). Therefore, is it unlikely that His dealings with me would be any different than His dealings with those who are prophets and scriptural heroes?  The question, then, becomes not, "Why are you abandoning me when I need you most?” but "What do you want me to learn from your silence?"

This fall, I finished milking the cows, a quiet time in my day when I can sit and ponder.  I continued my meditation upon God's stark silence and the attendant discouragement as I walked from the barn towards the house.  I paused when I felt the tiniest whisper brush my soul.  Nearly imperceivable, it was as if the messenger was under strict command to not to break the silence, but conflicted, just mouthed the words. Had I reached my busy, bustling house, I would have missed that faint message.  Likewise, in the distracting barn of buzzing, biting flies and swishing, whippy cow tails, I would never have heard that subtle impression. Right there, though, in that passageway between barnyard and home-yard, all nature stilled enough for me to feel that cobweb tug of my soul: "Desi, what did you pray for?"

In only the way the Holy Ghost can teach, my mind expanded to many a time before Addie came when I prayed for faith--powerful faith as described in Jacob 4:6:

                 "And having all these witnesses we obtain a hope, and our faith becometh unshaken, insomuch that we truly can command in the name of Jesus and the very trees obey us, or the mountains, or the waves of the sea." 

How can faith grow if it is not tested?

In my youth, my parents separated and eventually divorced. The pain of those years felt crushing.  One night in a moment of weeping and praying, I felt someone come up behind me and put their arm around me. Powerful assurance that God knew what I was suffering, that He cared beyond measure, and that He sent angels to comfort and calm my troubled heart-storms, reverberated from that moment in all the storms that followed. Faith came easy; after all--God would be there to "wipe away all tears" (Revelations 21;4).

How can faith grow if it is not challenged?

Untested, unchallenged, faith remains stagnant.  As an active, living virtue, faith and stagnation cannot coincide.  Think of a seedling.  It takes much effort to come alive in the dark soil and push up into the light.  If, at that point, the seedling stagnates, it dies.  It’s tiny stem and cotyledon leaves will never be strong enough for it to survive the lashing spring winds or the burning summer sun. The seedling must continue to push roots deep into the soil to bring up nourishment that will thicken its dermal tissue to lock in water for parched days, to create sturdy, yet malleable, height and strength to withstand high winds and to push out a foliar canopy to shade against brilliant sunshine and smother weedy thieves. And ironically, plants must be parched from above to put down deep roots below in search of that nourishment that will strengthen them for their entire life cycle.

One year, our corn fell flat to the ground when a summer storm burst upon it. Our good intentions of giving it an abundance of water in hopes of growing large kernels totally backfired on us. The irrigating water created shallow-rooted stalks that could not withstand the angry winds of that one summer storm. We lost the entire crop. After that, we learned to let the youthful plants suffer a bit. We stressed them just enough to get their roots to anchor into the soil. Deep and strong nets of roots now keep all our stalks upright, despite fierce gales and pounding hail. Those strong roots keep the plant continually upright, reaching for the sun, even when that sun is hiding behind dark clouds.

The Creator knows a thing or two about gardening. How my little corn plants must cry out to me, “Gardener—give me water.  Let me know you’re there. I’m parched; I feel abandoned. Are you leaving me to wither away?” Likewise, I’ve cried out, “Creator—give me Living Water. I’m parched; I feel abandoned. Are you leaving me to wither away?” With perfect observation, I water my six-inch corn leaves at just the right time. With perfect precision, I must trust that the Creator will dispense Living Water upon me when my roots are anchored deeper and stronger in the soil of faith.

I realize now, it was naïve of me to think that the experiences and faith I grew as a youth would sustain me throughout my entire life. That would be comparable to thinking your 3rd-grade multiplication facts are all you need to know to pass the ACT in 11th-grade. God must work our faith—test it, challenge it—see if it is ready for more power.  In that gateway, I learned that this silence is just one of many plateaus to cross in my quest to ascend a mountain of faith. 

Thus, as Robert Frost would say, “Two roads diverged in a wood” (Frost, 1916). I’m looking down each one as far as I can see.  One path leads uphill.  If I take it, I put my hope into action. I continue to trust that, though lost, confused and abandoned, God is still aware, still cares, and will still comfort me at some point.  He hasn't forgotten me, but He does need me to learn how to stand upright and reach for the Son, regardless of the clouds behind which He is hiding. . . there is purpose behind the silence.  The other road is downhill. It leads to cynicism, doubt, anger, and apostasy. In it, I rail, shaking my fist at heaven, "You said you would be there for me! You're not! I can't trust you! You are nothing more than a fable!" I turn from God and decide, "If you're not going to help me, I'll help myself!"

So-which path do I choose?  “I [take] the one least traveled by.” I’ve come to realize that God will not reveal to me the pavilion covering His hiding place. But—that doesn’t mean I cannot seek it!  So, I’m putting my feet on the uphill path—the quest that seeks the Living God.  Though there is immense silence, I will believe that He is there, that He knows what I’m going through, and that He will still send angels to comfort and guide me.  I’m seeking His pavilion in every sunset, in the service rendered by so many godly friends and neighbors, in the revitalizing truths of scripture, in the holiness of sacred temple space, and in the walks from the barnyard to the home-yard where tiny tugs query, “What did you pray for?” I’m seeking until I can say face to face: I see it—

THY PAVILION.

Thank you for your perfect tutelage, especially and even amidst eloquent, tutoring, stunning . . .

SILENCE.

References

Frost, R. (1916). The Road Not Taken by Robert Frost. [online] Poetry Foundation. Available at: https://www.poetryfoundation.org/poems/44272/the-road-not-taken [Accessed 7 Feb. 2020].

Addie Update: Catching Up on 2019

Well--It's December!  After the last photo post, I thought I'd just end Addie's adventures on that note and call it good.  However, we still experience new things with this sweetheart, so I thought I'd better document them for future reference.  So month by month, we'll get to where we are now.

June: After the teething trouble of March and April, Addie's adorable teeth turned violent.  During seizures, those teeth would chomp on her lip, leaving it bloody, and turning it into hamburger.  How do you put a band-aid inside the mouth?  Can you put Neosporin in there?  Of course, neither of those basic first-aid steps would help in this situation.  I asked her therapists if they'd seen other kiddos with shredded lips. They recommended that I go see the Comprehensive Care doctors at Primary Children's Hospital.  We made an appointment. The docs said, "You should ask Addie's therapists." That's when we knew it was up to us to figure this out.  After a quick internet search, I found posts by adults that seize and bite their tongues, leaving them much like Addie's lip.  One post commented how his dentist told him to have someone push on the TMJ (temporomandibular joints) when he went into a seizure, which would drop the tongue to the mouth floor preventing injury. From that, I thought to pull Addie's cheeks into a fishy-kiss when she seized to pop her lip forward and prevent her from biting it.  That worked!  The lip began to heal.  I also clean it every day with diluted Hypo-Redox, which not only disinfects the wound but promotes wound healing.  Additionally, I made an edible herbal salve to rub on there.  Her lip has a permanent cleft now, but it is no longer a bleeding, open wound.  So . . . (sing it Peg & Cat) . . . ♪♪"Problem solved. We solved the problem; problem solved."♪♪

July:  Addie made great strides in her therapies this month, especially visually.

August: Addie weighed in at 13 pounds 13 ounces at the dietitian visit.  Keeping food down and in and out of her lungs is a real challenge. She turned 2! I stopped pumping milk. Canning season got to me, and I was skipping too many pumpings to keep up my supply.  Additionally, Addie needed a more calorie-dense solution. She now gets a special blend of cow milk and pureed foods. For her birthday, Addie's Vison Therapist Darci brought her camera, lights, backdrops, and props and portable set supplies to our home and did a photo shoot of Addie.  These treasures are placed throughout this article. Thank you Darci!!

September: Each time we attended an appointment, a doctor would ask, "Has she had a swallow study?" Finally, we arranged to do one with Addie.  First, a speech-language pathologist came to our home to consult with us and to assess Addie's eligibility.  We learned so much from this therapist. (This is pretty typical. We've discovered that we learn more from therapists than from any other
medical specialist.  Therapists, in our view, rule the medical world in knowledge, skill, compassion, and amiability.)

This therapist first asked how many seizures Addie has a day.  When we answered "40-60", she explained that they don't even do swallow tests for someone who has 2-3 seizures a day.  She explained that swallowing is a complex skill that requires your brain to recognize food is in your mouth, nerves to propel the tongue to move food to the back of the throat, and muscles to work the swallow reflex and close the epiglottis over the trachea to prevent aspiration. She further taught us that the trachea is open all the time unless the swallow instinct is stimulated. If a person seizes during the study, the food plops right into the trachea and into the lungs. Therefore, swallow studies are just too risky for seizing patients.

The therapist then asked, "Do you ever see tacky, sticky mucous?" I answered, "Yes--every day. Where is it coming from?  Addie doesn't have a cold and yet gobs of this mucous comes out of her mouth, as she gags and chokes." With a sad look on her face, the therapist told us that Addie is aspirating her food.  That mucous is from the lungs. When food goes down Addie's trachea, the cilia in the lungs produce this mucous to catch it in hopes of preventing further entrance into the lung tissue.  She then sputters and coughs trying to expel the caught food. She said, "Most of these children die from aspiration pneumonia--their cilia just wear out and stop producing the mucous to catch the food."

We felt stunned to tears.  We hovered over our little daughter for the next week, trying to prevent the food from getting into her trachea . . . to no avail.  You can't "swallow" from the outside!  We tried tipping her over, holding her at a 45-degree angle, and all sorts of positions and tricks to keep the food in the right tube. Futile.  Finally, with many repressed tears, we had to accept that this is just part of the course of Addie's life and to prepare our hearts for the day of pending separation.

October: Great! Minimal seizing. Addie attended some sunny fall football games as the 12th man for her brother Adam's football team. With a special Sentinel jersey just her size, she soaked in some sun and breathed in fresh air every pleasant Saturday of football season. It was bliss for about 8 weeks.  When she gets into those calmer grooves, it almost seems as if she'll get better, learn to see, learn to hear, learn to crawl and maybe even walk someday.  I love these days!

November: We were invited to the deaf-blind conference where parents of Utah deaf-blind children come to get support and learn. As I sat in that conference room and learned from these amazing parents, I wondered, "Is this my future?"  Because Addie seems just like a little baby still, its hard to believe that she just won't outgrow her condition.  When I met those families at all stages of the deaf-blind journey, it really hit home of the responsibility that lies ahead of us. We learned so much there.

Mid-month, Addie's heart rate soared to 240 bpm.  She looked pale and listless with sunken eyes.  Weird purplish-circle rash bumps appeared on her stomach, her leg, and her arm.  She slept motionless, but her heart rate continued to spike from 220-240.  I consulted with her pediatrician, and we ruled out all the dangerous stuff.  Finally, I thought, "What if she's dehydrated?" I started pumping her with coconut water and electrolyte solution. We also took her out of the gloomy November weather down to sunny Mesquite, Nevada for Adam's football tournament.  The calming car ride, the sunshine, and the electrolytes did the trick. Her heart rate normalized, her color returned, and she just looked better.

Towards the end of the month, we started getting respite care for Addie. The nurse, seeing her oxygen saturation at 100 percent, recommended that I turn down her concentrator.  I turned it down to 1 L and Addie still registered 100 percent.  So--I turned it down again.  All-day long, I kept turning it down, but Addie looked worse.  Yes, her oximeter still said she was 100 percent saturated with oxygen. Her color looked really poor--almost blue. I couldn't understand it.  What was going on?  I switched her sensor, changed her sensor, unplugged and re-plugged her sensor. Then I thought to pull up the manual for the oximeter on the internet. I scoured its pages.  In an obscure warning, I found the answer (and I about threw the machine through the window!) The paragraph explained that sometimes when the arterial circulation is poorly saturated with oxygen, the oximeter may still read 100 percent.  The oxygen, leaking from the peripheral tissues of the foot, will be picked up by the sensor, giving a false reading. Some days I fear that my child will die because of my inadequacy! Thank goodness that manual was on the internet!  Addie looked much better after I turned up her oxygen.

December: After figuring out November, Addie stabilized for a while.  Then, she started fainting seizures again.  We hadn't seen those since she came off her drugs in 2018.  She fainted over and over and over again.  When this happens, she loses all tone.  If you lift her arm or leg, it drops like a floppy rag-doll.  One day, she seized like this for 40 minutes--she'd wake up, then pass out.  Her heart rate dropped to 70 beats per minute.  On a Friday after 5 pm, there's not much help available but prayer.  We just hovered over her and prayed that she'd come to. Prior to that spell, she had a night, a day, and a night of this neurological cough.  She could not stop coughing, and it was very rhythmic. She'd cough, not breathing in until her oxygen levels plummeted to the 60s or 70s. Then she'd take a big gasp of air and start the cough over again.  It wasn't a virus; it was her brain! We were helpless to stop it. That was the first time I shook my fist at heaven! "What's the lesson in this?  How can there be any good in watching your child suffocate over and over and over? In all of eternity, what will be the point of this?" I queried. After a good cry, I repented for my lack of faith.

This bunches up a lot of happenings all at once.  Please realize that this year, we had more days without much seizing than we did in 2018.  That is such a gift!  I also have to give credit to God for all the times that  "I had a thought" or "A thought popped into my mind". I know I am too weak to figure this complex child out, and I acknowledge God's hand in giving me those thoughts that rescue her from my fumbling! Our little girl is such a sweetie--just fills our home with so much love. We all adore her to smithereens!  God bless this little angel forever!

Addie Adventures

One fine spring morning, Addie asked herself, "Hmn . . . I cannot crawl or walk.  Could I fly?"

Addie borrowed some silvery wings from a dragonfly; then, she took a flight over the hills and down by the pond.

New to her wings, Addie suddenly found herself in the deep pool.

 

Trying her knack at swimming, Addie loved seeing the many colorful fish.

Nearby, Mama's clothesline waved in the warm sunshine.

"Perfect!" thought Addie.

As Addie basked in the sun, she thought over the day's adventures.

Then she remembered . . .

"I don't need borrowed wings."

Photography and scene design courtesy of Elise and Hyrum.