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 . . . .

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 . . . . 

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 Update: April/ May: Teething Trouble

Its been rough!  Toward the end of March, Addie started, what we call, "planking."  She stiffens like a board, and you can literally lift her over your head as she stays just like a plank.  With toes pointed downward, and arms twisted in and then away from her body, her chin quivers and her muscles tremble at the tightness.  It is futile to get her to untwist or unflex.  As soon as you stop applying pressure, she immediately returns to her contracted state.  Imagine trying to get a 2x4 to sit in a car seat or bouncer chair! 

The first week of April, her heart rate soared to 229 beats per minute.  We couldn't get it below 180, and we feared she felt pain that we were not addressing.  During her days and even her nights, that little heart beat near 200 bpm with spikes up to 215 or 229. 

She'd struggled for weeks with external ear infections, and we'd taken her to the Pediatrician for help.  Once the infections resolved, however, we called for another appointment with Dr. Oliver, the chiropractic neurologist.  He generously gave her a treatment of the Repetitive Somatosenory Peripheral Stimulator (no charge).  On the ride home, Addie finally relaxed, and for the first time in weeks, her heart rate dropped into the 140s and her limbs loosened.

One day, Cicely exclaimed, "Addie has a new tooth!" I'd not even thought about prying her tightly pursed mouth open to investigate during those weeks of planking. I did so now with a pink sponge swab.  Sure enough!  Addie not only had 1 tooth, she had 2 new baby teeth--her front ones--one on top and one on bottom.  Remember that she's almost 2 years old?  Up to this point, Addie had grown 4 molars, but her front baby teeth never came in.  We did not think we'd ever see them among her gummy gums.

After the teeth popped through, we delighted in five days in a row with minimal seizures. She gained 5 ounces! We tried Addie's hearing aids again, and to our surprise, they still fit her.  We could put them in and leave them on for hours.  It didn't seem to bother her at all.  We felt such hope once again that she would progress. Her vision therapy made great strides, too.  She could maintain her gaze on an object and look away when it became exhausting.  Sooo exciting. We even took her to church three times and were together there as an entire family!

But, those good days ended too quickly.  Addie's eyes started to roll back into her head, and then the lip smacking began again (indication of seizure in progress).  Little things started setting her off into cascades of seizures. . . it almost seemed as bad as when we brought her home from the hospital.  We couldn't even position her without her seizing.  Attempts at therapy came to a halt; she just couldn't handle any stimulation.  For six weeks, she planked and stiffened, fainted, and went limp, bobbed her head like a chicken, rolled her eyes, and smacked those precious lips. 

Again, those tightly pursed lips evaded entrance.  One day, Chris put a silicone finger toothbrush on his finger and rubbed Addie's gums to see if she had teething pain.  OUCH!  Like a horse, that girl bit down and did NOT let up.  We looked in her mouth again and two more front teeth had emerged--another on top and another on bottom. 

Wow!  Did you ever know teething could be so stressful?  When babies are cranky, now you know why.  For Addie, who does not cry, her seizures and heart rate are our only indicators that something is amiss.  Of course, for Miss Adelaide, it seems everything triggers seizing.  Chris put it this way, "She seizes when she digests, when she poops, when she sees, when she hears, when she's hot, when she's cold, when she sleeps, and when she can't breathe . . . so basically, every aspect of her life triggers seizures."

Addie is back to planking too. Chris (problem-solver extraordinaire), however, has found that if he crosses her legs Indian style and secures them with the straps of her bouncer, she will relax her back and sit in her chair.  She'll fall asleep once her legs aren't stiff, so that position has been a real gift for her and us. And lastly, with all this energy expended, weight loss is a bust.  She is having such a hard time keeping her food down. 

Oh, what to do?  Just hold her a little longer, rock her in figure eights, sing lullabies, pray for guidance and angles to attend, and shower her with kisses.  Our motto, "No one seizes alone."  We are so blessed to be able to attend to her night and day so we can live by it. Thank you for your sustaining prayers during this emotional roller-coaster ride.

Addie Update: February/March--Inside My Head

February began with Addie calmer and more stable than she'd yet been. We felt great hopes that this little girl would learn to hold up her neck and find her arms.  One day in her little bath, I dripped cold water on her arms. (Now that may seem cruel, but one of the therapies encourages us to play around with temperature--hot and cold.) Her little arms came up out of the water and flinched in response. First time! Joy of joys!

Then, the honeymoon ended, and the end of February brought a cascade of seizures like we hadn't seen in months.  It felt discouraging to be stepping back from progress.  Had we pushed her too hard?  Did we overwhelm her with all the therapy?  Or did her brain just need time to process?  We completed our weekly therapy with Dr. Oliver and just put a pause on everything.  Her seizures continued to come. But . . . I consoled myself, at least she's growing.

On February 28, we took her to her 18-month check-up.  I was excited to weigh her--those round little cheekers would have to mean we were nearing the 13 pound mark!

At  9 months, Addie weighed 12 lbs  7 oz
At 12 months, Addie weighed 12 lbs 9 oz

And at 18 months

12 lbs 5 oz.

Complete and utter FAIL!

I felt devastated.  This is my expertise--diet and nutrition-- and my baby is not growing!  What about those round cheeks!  Weren't her legs looking a bit chubby? What happened? The extra fat in her milk? Was it the increased seizure activity taking its toll? What an embarrassment!

As I stood there comprehending the numbers on the scale, I started questioning my psyche. Am I the opposite of an anorexic? They see themselves as fat so keep starving themselves, but I see Addie as chunky and so I don't feed her enough?? What about those fat cheeks? As I looked at her on the doctor's table, with new eyes, I thought, "Oh dear . . . those scrawny legs and those protruding ribs!  How did I ever think that she was gaining weight?"

That brought on another slew of questions as my Anne-of-Green-Gables-imagination went to work: What if I am one of those mothers who deliberately sabotage their children's health to get attention and pity?  What if the doctor is going to call the state on me? They'll come to my door and take my kids away to foster care.  I pictured myself in an orange jumpsuit, hugging my kids with bars of iron between us.

Still, my brain persisted: What if I'm just making this entire experience up, and if I just stopped, Addie would get all better?  The joy of that thought yanked me from the black hole of my imagination. My mind knew it  would take too much work for my brain to get past the reality of sleepless nights and the daily stress of a seizing baby!  If I was going to make something up, I'd let myself get sleep for sure, and Addie definitely would not seize . . . EVER!!

Once that emotional whirlwind passed, my rationalizing mind entered the scene: "Desi--its not your fault.  You've tried your best.  She seizes continually. That takes extra calories. She doesn't tolerate a higher feed rate. She vomits when you push food into her. You're boosting her milk with extra oil already.  What more can you do?  At least she's maintaining her weight, mostly."

Then the fear mind: "What is the doctor going to say to me? What if I'm not humble enough to take the counsel? What if I'm found in "contempt of the doctor's office"? What if they take control of feeding Addie and take her off her epilepsy diet?"

And finally, my grounded mind: "Desi--did you consistently fortify Addie's milk with extra coconut, cream, or olive oil?"

"Well . . . no, I cannot say did.  Sometimes I was just too tired to take the extra step to add oil to her milk.  Sometimes I just forgot. Sometimes I just thought, "I'll do it next time . . .she's gaining weight . . .it will be fine."

My grounded mind again: "Desi--you're doing all the right things.  You just need to be consistent about it.  Fortify every bottle of milk you give to Addie."

How I love the no-nonsense practicality of my grounded mind!

Now, of course, my sweet pediatrician did not lecture me or criticize.  She simply said, "We need to get this baby more calories!"  Since February 28, I've been consistent! Mashed avocados, nut butters, and olive, coconut, and grapeseed oil have been added to Addie's g-tube menu.

In March, Addie continued with lots of seizure activity and profuse sweating that tried to rob her calories.  Double ear infections took us back to the doctor's on March 28. But in spite of all that, guess what she weighed!

March 28, 1019: 12 lbs 15 oz!

Consistency! It works!

Addie Update: The Road Less Traveled

In December, Addie struggled.  We'd just finished weaning, and to our dismay, for about 2-3 weeks her seizures worsened*.  Chris asked, "Isn't there anyone who can help us?

The previous May a friend told me about the Neuro Clinic.  The doctor there assisted her son in overcoming a concussion after a car accident, enabling him to get out on his mission on time. In answer to Chris' question, I researched their website and wrote an email to the doctor telling him about Addie to see if he had anything "her size" to offer.  I pushed send and then sent a prayer heavenward: "Please let him have something to help us. This is my last hope."

With apprehension, I opened my email later that day--not really expecting an answer--but hoping. (I'd learned from working with the Primary's  Neurology Department  that these things take time. . . I shouldn't expect to hear back until I'd called a couple times and a week had gone by.)  So imagine my delight to get a return email the very day I sent mine: "Yes!  I would love to meet your daughter Addie.  Most of the therapies I use are sensory.  There is always something we can do." I scheduled an appointment right away.

That first appointment? AMAZING!  Dr. Oliver spent two hours consulting with us. He found out all about Addie by just letting us talk and asking us questions. He actually examined my baby!!  He watched her eye movements, her lip movements, the way her limbs stiffen during a seizure.  He looked at her posture and her skin.  He assessed her reflexes, her abilities, her cognitive and nutritional status. Then, he went to work. He educated us about seizures (oh, how we wished we'd known that a year ago!). He told us what to worry about and what not to.  He told us what area of her brain is impacted as indicated by the the different movements of her body.  He gave us homework to help stimulate the troubled areas of  her brain, which would help Addie create new brain pathways to cope with stress and raise the seizure threshold. Next he prescribed a protocol of nutritional supplements and in-office treatments for the next six weeks--12 treatments of the RPPS (Repetitive Somatosensory Peripheral Stimulator) and 6 visits with him.

He answered my questions as well.  I showed him some of the things I do to try to help Addie through seizures and asked, "Does this have any effect . . . am I just fooling myself by trying?"

"You know," Dr. Oliver began, "there is something to the placebo effect.  Whether it scientifically works or not doesn't matter.  You are her mother and you love her.  Therefore, whatever you do with the intention of healing your baby is going to help her.  You keep doing whatever you think to do." I about wept right there in his office. (How many times at Primary's had I asked similar questions only to be shot down with a placating smile behind the verbal, "No--that will not help.")

Lastly before we left, Dr. Oliver asked, "Does Addie always lean to the left?"  Her little body, for months, contorted stiffly to one side, nearly in the shape of a C, which pushed her left rib outward. With a simple adjustment in her neck area, and before our eyes, she moved her head from the left to the center and then, with another tweak of her neck, to the right.  Dr. Oliver taught us how important it is to exercise the nerves that run up and down the right side of her neck.  He emphasized that without stimulation, the nerves would lose their ability to communicate with the brain.  He tweaked her a few more times as her head turned back to the left, and he taught us how to do the adjustment as well.  By the time we left, Addie looked more relaxed and naturally posed than we'd seen her in months.  She slept peacefully all the way home.

We've been going twice a week for the RPSS treatments.  Dr. Oliver always pops in to see how Addie is doing. Whether or not we're scheduled to meet with him that day, he will ALWAYS take time to answer any questions we have.  In our weekly visits with him, he continues to assess Addie's progress, assign us more homework therapy for her and educate us.  He's so full of knowledge that I marvel that any brain can hold that much information about the brain.  Dr. Oliver is also full of hope and his optimism is contagious.

What a difference--to go from Primary's where we are told, "We don't know a lot about the brain, but Addie's seizures are intractable . She'll die within 2-5 years when her brain just burns out.  Just keep her comfortable on the drugs--there is nothing you can do" to Dr. Oliver, "We don't know a lot about the brain, but we do know that there is plasticity there.  You can always do something to help the brain work better.  There's always hope."

And boy does it show!  Prior to seeing Dr. Oliver, Addie's heart rate beat above 140 bpm.  After the RPSS treatments, her heart beats in the 120s or lower.  She's sleeping better and her seizures are decreasing dramatically as she learns to use her "rest & digest" (parasympathetic) system instead of her "flight and fight" (sympathetic) nervous system.

Last time, I wrote about Heaven's silence.  As I look back, I stand in awe because I now see that we were led.  Weaning Addie from her seizure meds was scary--a true step down an unknown path. We acted against the medical advice we'd received from her neurologist, and it took much courage to push through the self-doubt and her attendant increasing seizures.  Holding our ground and walking that road of weaning, however, brought us to an exquisite vista--The Neuro Clinic.  Addie would never have benefited from The Neuro Clinic if she'd still been sedated by drugs. Only by choosing "the road less traveled" could this new view open to us. I'm exceedingly humbled and feel to praise my Maker all day long for His tremendous guidance, even when I felt like I walked alone. Truly He guides our steps.  It takes risk and courage on our part, but to move, to act--it's the only way to get new paths to open to us. Don't be discouraged if you feel you walk in the dark.  Wait and continue onward--the light will come!

I leave you with two favorites to summarize:

Josuah 1:9 

Have not I commanded thee? Be strong and of a good courage; be not afraid, neither be thou dismayed: for the Lord thy God is with thee whithersoever thou goest.

The Road Not Taken

by Robert Frost

Two roads diverged in a yellow wood,

And sorry I could not travel both

And be one traveler, long I stood

And looked down one as far as I could

To where it bent in the undergrowth;

Then took the other, as just as fair,

And having perhaps the better claim,

Because it was grassy and wanted wear;

Though as for that the passing there

Had worn them really about the same,

And both that morning equally lay

In leaves no step had trodden black.

Oh, I kept the first for another day!

Yet knowing how way leads on to way,

I doubted if I should ever come back.

I shall be telling this with a sigh

Somewhere ages and ages hence:

Two roads diverged in a wood, and I—

I took the one less traveled by,

And that has made all the difference.

 *I've learned in my studies that after your body adjusts to a mind-altering drug, like Addie's seizure meds, it evolves to a new state of living with the drug. Even after you've weaned from a drug and it has all worked out of your body, you will still see residual stress for a short period. The intensity will make you think, "Oh no--I'm broken! I must need this drug to be normal. I better go back on it."  Just hold on.  Give your body time to adapt to a new state of living without the drug. Addie's seizures intensified after the drug was out of her body.  I cried, "Oh--she really did need the drugs."  It took about three weeks for her to adapt to her new state; but she did learn to cope.  We would NOT go back to her drugged state.  

Addie Update: Drug-Free at last!

We pushed through the wean from phenobarbital through October and November.  Since Addie was going to twitch and shake and seize anyway, we decided to not give her a week break between dosage drops and just get through it. Rough!  Weaning was intense and self-doubt rolled upon my mind like waves crashing on a beach.  I cried for her incessantly shaking body. "Does she need the drug?" "Are we torturing her?"  Chris kept emotionally above the drama and steadied the boat by reminding me that we're probably just seeing signs of withdrawal stress, not her baseline.  We would need to continue on course to see who she is at baseline.  He reassured me that if she still needed the drug once we got there, we could always put her back on it.

So we lived out the nightmare.  Blessedly, as we got closer to the chemicals leaving her body in the final week of November, a beacon of hope appeared.  She finally stopped twitching all the time. She became calmer.  She started to move her legs--crossing them, doing a flamingo-type pose, and just lifting them on her own.  I saw her yawn for the first time; she started to stretch when she woke up.  She also started crying . . . and when I picked her up, she stopped.  She would cough slightly to get attention--again, when I patted her to reassure that I was in the room, she stopped the coughing. The muscles around her mouth moved enough to almost look like an attempt to smile. Such delight!  To get any communication is such a treasure.

During the Thanksgiving break, we had about 1-1/2 weeks with very limited seizing--maybe ten a day.  The residual meds were just leaving her body.  We felt so hopeful that maybe the drugs were causing her seizures the entire time.  But, that river of hope flowed downstream.  Her seizing has since returned in full force--back to 60+/- day.  Needless to say, weight gain has been a bust.  At her 15-month appointment, she'd dropped to 12 pounds. You just can't shake and twitch that much and gain weight.  Its like she's exercising 24/7.

Still, we feel that she is better off the drugs.  The meds neither lessened nor stopped the seizures. It  is good that she's not suffering through their horrid side-effects, especially the stress of administration in which she would vomit & seize every time they hit her stomach.  Better than that, however, is that Addie is no longer sedated.  She is very present with us--looking around and learning about her world, even if in a very limited way.  She is not drugged and it shows in her eyes! This may, in part, be why we are seeing so many seizures. The input into her brain may be overloading her now that she's alert and attentive.

We had one more drug interaction in December: HIVES!  Addie broke out in a horrible case of red splotchy rashy bumpy welts for three days.  I totally panicked and reviewed everything she'd touched or that had been pushed through her g-tube.  I assessed what I ate just in case an allergen had transferred through the breastmilk.  Mostly I prayed.  The answer came in a medical book by my bedside.  I thumbed through it and read a blip on hives in relation to steroid cream given for eczema.  I'd been dabbing a dot of a prescribed cream on her g-tube site since March.  I quickly pulled out the cream and looked it up on drugs.com.  It described, nearly to a T, what I observed in Addie--a rash around the g-tube site for a few days  followed by systemic hives.   Long-term use of the cream, especially when bandaged, had a way of building up toxicity in her bloodstream. Needless to say, Addie is no longer on that drug cream either. We haven't had any more issues since stopping the cream.

So--Woo Hoo--Celebrate!!! Addie is drug-free!!!

We love having her here with us mentally.  We love looking into her dark brown eyes and finding the sweetness of her soul staring back at us. She's as congenial as she ever was--just a soul of peace and delight in that tiny, crippled body. It is an honor to have her in our home and in our arms daily.  I feel that for everything she requires in her care, she restores back to us ten-fold in love and joy.  Such a heavenly gift!

A Mother's Musings: Living with Addie is like . . .

• sleeping next to a Richter 1 earthquake
• loving and living with an angel
• holding a fish out of water
• seeing every moment and every movement as a miracle
• when your dog gets hit by a car and confused, he looks up at you with dark sorrowful eyes pleading for help as his body shakes and convulses
• being perpetually in the newborn stage 
• getting quarantined
• an emotional roller coaster--thrilling heights and horrible stomach knots as you balance precariously at the top of the hill prior toward spiraling down to valley lows
• learning to be a home and hospice nurse
• watching others eat when you're starving
• delighting in the smallest developmental movement
• being under house-arrest
• playing the game "I love you but I just can't smile" everyday and losing to Addie every time
• never fully asleep and never fully awake
• bursting with love
• a wound that never heals
• taking one day at a time
• ever stepping into the dark awaiting the light that will come
• becoming a massage/physical/occupational/vision/communication therapist
• a long-lasting longing
• playing with a doll
• holding onto hope 

•  living in the moment joyfully
• questioning yourself and doubting yourself daily, "Am I doing the right thing for her?"
• never planning ahead
• living in constant awe of babies/children--how they smile, coo, eat, cry, crawl, walk, lift their neck, arms, roll . . . all by themselves
• playing with a tamagotchi toy--where the pet leaves the screen and you're not sure where it went or when it will return
• trying to dress a barbie-like doll from the dollar star--the knees and elbows don't flex/bend and you must really stretch and nearly tear the clothes to get them on or off
• intense gratitude for the gift of Addie

A Mother's Musings: When the Heavens Weep

Okay--I admit it: I cry everyday.  How could you not? When you watch your baby seize over and
over, it hurts. It hurts because you are helpless to stop it. It hurts because you see the confusion in
her eyes as they plead, “What’s happening to me?  Make it stop.” But more than anything, it hurts
because I see this beautiful child before me--so perfect in proportion with her wild, naturally frosted
hair, her petite nose, her beautiful pink lips, her tiny fingers and toes, her little legs and arms, her sweet
feet and clenched fists, her smooth skin, her slender shoulders and neck, that beating heart, and of
course those gorgeous deep-set eyes.

How, I ask, can such a beautiful little girl be so crippled and delayed in her development by this terrible
disease? I guess I think the seizing would make more sense if she at least looked deformed.  But when
she is so perfectly beautiful and yet the seizures roll across her body, draining and maiming her, a
heart-wrenching paradox and illusion fills my thoughts. The mirage of potential surrounds my sweet
Addie; yet the drought of her epileptic reality desiccates it.  Thus, in the great Sahara of my mind,
the only raindrops present fall from my eyes.

Do the heavens weep for us? How could they not? I imagine our Heavenly parents look down upon us
in much the way I look down upon my Addie.  Our heavenly family knows very well our eternal beauty,
our potential, and our pre-mortal power. To watch us shake, convulse, faint, stall, or blank out as we face
mortal challenges is akin to spiritual epilepsy. I’m sure they sorrow for us as they watch us seize in our
mortal journey and especially as we cry out, “What’s happening to me?  Make it stop.”

Blessedly, our Heavenly parents know (and we could know if we acknowledged it) the the cause
behind our spiritual epilepsy.

Have you ever been . . .

seized by fear?

seized by lack of confidence?

seized by pride?

seized by anger?

seized by ignorance?

seized by envy?

seized by apathy?

seized by enmity?

seized by darkness?

seized by addiction?

The hopeful thing about spiritual epilepsy is that it is not incurable. The Savior of the world
walked into the Garden of Gethsemane and hung upon Calvary’s cross, willingly taking upon Himself
our spiritual seizures. They pressed upon Him and in His own words:

 “ . . . caused myself, even God, the greatest of all, to tremble because of pain, and to
bleed at every pore, and to suffer both body and spirit—and would that I might not  drink the
bitter cup, and shrink—Nevertheless, glory be to the Father, and I partook and finished my
preparations unto the children of men” (my emphasis added) (Doctrine & Covenants 19:18-19).

He convulsed and contracted and bled for us that we might be cured.  How do we find access to

this cure? Jesus Christ answered that as well:

“Wherefore, I command you to repent, and keep the commandments . . . .  Therefore I
command you to repent—repent, lest . . . your sufferings be sore—how sore you know not,
how exquisite you know not, yea, how hard to bear you know not. For behold, I, God, have
suffered these things for all, that they might not suffer if they would repent;
But if they would not repent they must suffer even as I . . . .Wherefore, I command you
again to repent, lest I humble you with my almighty power; and that you confess your sins,
lest you suffer these punishments of which I have spoken, of which in the smallest, yea, even
in the least degree you have tasted at the time I withdrew my Spirit”
(Doctrine & Covenants 19:15, 16, 17, 20).

Yes--the heavens weep for us . . . but only when we choose to willfully suffer spiritually epilepsy instead of turning to the Great Physician to be healed. Our Heavenly parents are not helpless to help us; but in respect of our agency, they will not intercede unless we ask for help.  (You should hear the pitter-patter of feet that come to Addie, on the rare occasions when she cries out. The entire family races to her bedside, hovering, “Is she okay? What does she need?”) How anxious, how ready, how willing our watchful Parents await to bring us healing.

My sweet Addie’s battle with physical epilepsy stands in stark parallel to our very real battle with
spiritual epilepsy. Her lost potential bears a tragic witness to our own lost potential if we fail to
call out to God in repentance.  Her incurable seizures serve as an incessant and contrasting
reminder of our curable ones. Let not her suffering be for naught. Let her help you and I
remember that we, with Christ, are never permanently disabled.

Addie Update: Courage, please!

This baby girl has the deepest pools for eyes.  When she's focused, you feel like you are looking into the eyes of an adult instead of a baby.  It feels like she's always trying to tell me something important.  I wish I could unlock the language of EYE and interpret her messages.  I always think she's saying, "It's okay. Don't cry. This is how it is meant to be." or "It isn't your fault, Mama.  I signed up for this." Sometimes when she seizes, her eyes stay centered and focused while her little body shakes uncontrollably.  In those too frequent moments, I sometimes read confusion, frustration, or exhaustion; and always, I read courage.

I'm in need of courage right now.  We finally got Addie to a stable spot in her oxygen after three months of fighting inflamed lungs, so we're starting to wean seizure meds again.

Guess what was causing the inflammation?  The chest-percussion therapy (CPT)! All this time, we thought the smoky or polluted air from this summer's forest fires made her oxygen setting increase from less than 1 liter up to 4.5 liters.  For weeks, we fought to keep her oxygen saturation above 89% . . . we felt good if we got to 89%, but we were supposed to keep her between 93-97%. Additionally, the stress of trying to stay oxygenated, the energy requirements of seizures, and turning off feed four hours/day to do CPT took a toll on her weight gain. Addie has yet to hit 14 pounds.

We met with three of her doctors at the end of August.

THEIR PLAN

• Increase her feed rate.
• Add more formula to her mother's milk to boost calories/weight.
• Keep doing the CPT with added puffs from her steroid inhaler.
• Meet with a Gastroenterologist to do a swallow study to determine if Addie is regurgitating fluid into her lungs, causing inflammation, and increasing her oxygen needs.
• Meet with an Orthotist to create braces for Addie's contractures (Addie's biceps and back muscles were in a perpetual state of flexion, causing her body to contort--her brain couldn't send the message to relax the muscles).
• Treat her double ear infection (asymptomatic: no fever, no runny nose, no virus at home???)
• Come back and see us in 3 months.  

OUR REALITY

• The increased feed rate caused increased seizures, upper airway congestion, and stomach agitation so we lowered the rate
• Adding more formula to the mother's milk caused vomiting and increased risk of lung aspiration, so we took the formula out completely and the regurgitation stopped completely.
• We're working on boosting her weight gain through homemade baby food and extra cream added to her mother's milk.
• When we started CPT 3 months ago, Addie's oxygen need increased, so we stopped CPT and within 2 weeks, she dropped her oxygen needs down to less than 1 liter (in smokey, polluted air, no less).She coughed up bloody, pink mucous the day we came home from her appointments. Again, stopping the CPT cleared up the lung inflammation--goodbye pink mucous!
• And the double ear infection? We cleared it up with home remedies and read the package insert of her steroid inhaler: MAY CAUSE EAR INFECTIONS AND RESPIRATORY CONGESTION. Needless to say, we weaned off that as well. 
• Once the above cleared up, Addie's body relaxed and the contractures did too.

I have yet to schedule any of Addie's appointments. . . .

So back to courage? Once Addie stabilized on oxygen, we could start weaning her last seizure med: dreaded phenobarbitol.  We've been at it for two weeks and it is ROUGH!  They say (and use your condescending voice here), "Babies are not addicted to it, they are only dependent."  Semantics!  This baby can't crawl over to the pill bottle and thrust pills down her throat to get the withdrawal symptoms to stop!  But . . . if she could, would that then be classified as addicted? We are taking the wean so slowly but still must watch Addie stress--which increases her seizures.  And she suffers and sweats and cries out and vomits and twitches night and day . . . all because of a drug.  GRRR!

We had to take a break from weaning this week.  I couldn't handle putting her through it again . . . I couldn't handle it for myself.  I feel myself thinking, "Just give her the drug . . . make it stop!"  The reality, Chris keeps reminding me, is that the drug does not make it stop.  We must push forward to find her baseline and work from there.  If we could wean consecutively, it would only take us 6 more weeks. ONLY!  As it is, we will probably have to take many breaks just to keep her stable enough to continue.  Last week, she seized herself away night and day until Saturday night when her over-taxed exhausted body finally slept deeper than the seizures could reach.

So--I need courage to continue this course of complete and utter about-face from the well-intended but very exasperating medical advice of PRACTICE-ioners.

Thank you for your prayers. . . you'll never know how much they help!