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!

A Mother's Musings: When the Heavens are Silent

Through Addie's entire life (these past 16-months), I have sought counsel from the Lord as to how to proceed in her care, what resources I needed to look to, how I could advocate for her, and basically what is the best way to help her.  However, I have neither felt nor heard the Lord's counsel.

I felt like the author of the poem "Footprints in the Sand," who queried God:

"LORD, you said that once I decided to follow you, you'd walk with me all the way.

But I have noticed that during the most troublesome times in my life

there is only one set of footprints.

I don't understand why when I needed you most you would leave me."

I knew that if He would just answer me, I could move forward with confidence in what Addie needed--I could demand the doctors to give her good nourishment instead of taking away her mother's milk; I could say no to drugs; I would know what genetic tests to order; I could wean off her seizure meds with certainty instead of self-doubt. I could just act in Knowledge of what would work instead floundering in Faith of what I hoped would work!  Wouldn't that be better than me bumbling along and making so many errors in the life of this fragile gift from Heaven?  Surely Heaven wants me to succeed in this most important endeavor.  Why the silence?

I analyzed my life thoroughly over and over to see if I had breached my covenants in any way that would prevent me from receiving answers.  I asked for understanding behind such limited, counsel sent my way. Was I too tired? Yes. Too time-constrained? Yes.  Too mentally and emotionally preoccupied? Absolutely. The state of my life then and now isn't going to change any of those barriers to revelation, so I prayed in repentance for a way around them.

This month, as I worshiped in the temple, I pondered again how I could get the heavens to unlock for me to give me the revelation I seek on so many matters--not only Addie.  As I performed Initiatory ordinances, I listened intently to the promises given.  Suddenly, my mind and heart felt enlightened.  I realized that I have been promised a mind that can decipher between options.  If I'm not receiving guidance from God then He must trust me to exercise the intelligence he's already given me. He must trust that I can take care of Addie and all my other assignments. He expects me to "use my brain!"   I had to laugh at that!  I also felt humbled.  Here the wisest Man in the universe, who could so readily give me the answers I seek, knows I will grow in wisdom if I learn to use the mind He's already blessed me with.

Put another way, Sister Sharon Eubank spoke in a Relief Society Fireside in my Stake earlier this year.  She said that President Packer once said in a meeting regarding receiving revelation: "If the light is green, its always a Go." Another image that comes to mind is the way an Islander taught his kids to swim: he simply tossed them out of the boat into the ocean.   If the Lord gave us instruction and counsel on everything, how would we ever learn to think, to test, to explore, to grow?  We need times of silence to stretch our capacity to become as He is: able to "counsel in wisdom over all His works" (Jacob 4:10).

Beware, however, of rationalizing away His command to "counsel with the Lord in all thy doings" (Alma 37:37). He may choose to be silent for our personal growth, but we need to ever seek His counsel regardless. To do otherwise, cuts us off from Him by eroding our faith and trust, for we have been commanded "to repent and call upon God in the name of the Son forevermore" (Moses 5:4).  

Knowing that there are times the heavens are just going to be silent for our own growth, we can take confidence, after ensuring we are keeping our covenants, that God trusts us.  We can move forward with faith in Him, His work, and especially in the faith He has in us. Then, we can conclude as does the final stanza of "Footprints in the Sand:"

"My precious child, I love you and will never leave you

Never, ever, during your trials and testings.

When you saw only one set of footprints,

It was then that I carried you."

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!

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!

Addie Update: Home Again

Quick Update: 

Our little critter is home once more.  Doctors hesitantly released her to home care on Sunday evening.  In her current condition, she should still be in the hospital. However, due to the high number of cases of RSV and other viruses currently in the hospital right now, the medical team deemed it wiser to send Addie home from the Intensive Care Unit instead of following protocol to rehabilitate on the Infant Floor.  

She's on higher oxygen (2.5 vs. 0.75) need than when she went into the hospital, but since we felt comfortable attending to her at home, they released her to our care. We were also given a different O2 concentrator that will allow Addie to have higher home settings for now as her lungs continue to heal.

It's wonderful to have her back home.  As you know, sleeping and resting in a hospital is nearly impossible for both babe and parents.  Every two hours, the nurses come in to check blood pressure, listen to lungs, administer meds, etc.  Then, with all the beeping machines in between, it is hard to sleep.  Since arriving home,Addie has rested so well.  She slept all of Monday, and Chris & Des each got a brief, but very much needed, nap too.

Thank you for continued prayers for us.  They help more than you'll ever know,

Desi

3 Valentine Messages for Addie Supporters

“Thou art not yet as Job; thy friends do not contend against thee, neither charge thee with transgression, as they did Job.” --Doctrine & Covenants 121:10

When I  consider Job, my mind turns to his tragic losses of  children, property, and health. He suffered loss upon loss, but what I never understood before now was how tragic it would be to have your friends “contend against thee.” In this experience with Addie, my community of support has buoyed me up and cocooned me from so much sorrow.  I have been completely carried by the prayers, fasting, and goodwill of you all.  In fact, I think one fourth of the tears I’ve shed is in overwhelming gratitude for the ministry of my friends.

“ . . .by small and simple things are great things brought to pass . . .” --Alma 37:6

I am astounded by the power of small & simple acts of love.  So often as I’ve thought to  bring an offering of love to a friend in need, I am bombarded with thoughts like these: “Oh--this is lame.” Or “This is so small--hardly worth the effort.” Or “My efforts are almost embarrassing--what can I really give?”  Or “Just go home--there is no way you can touch the grief here, and you’ll only make things worse.”  Well--it is now obvious to me that those thoughts are from the Adversary. On the receiving end of much ministry these past 5 months, I am cognizant that the tiniest things matter.  Every act of service and love is like a drop of healing in the vessel of the grieving heart.  The “size” of the effort doesn’t matter--each drop works to  soothe pain and to fill the the heart with overflowing peace.  Every prayer, every fast, every tear, every email, every hug, every smile, every visit, every meal, every gift, every toilet scrubbed or wall washed, every floor swept or vacuumed or shampooed,  every weed pulled, every donation, every sacrifice, every cookie on a plate, every play-date, every reaching out to my kids, every letter, every word of encouragement, every silence of not knowing what to say, every offer, every offering, every thought sent my way--thank you for your ministry. I feel overwhelming abundance & gratitude in the community of true believers that surround me both near & far. My only hope is that I can be as good a friend from now on as you have been to me.  Thank you from my depths!

“ O God, where art thou? And where is the pavilion that covereth thy hiding place?”

--Doctrine and Covenants 121:1,4

In the midst of trial & in much need of guidance, I felt stunned that I could not receive revelation. I asked, “Why are the heavens closed against me when I need help the most?” I wondered, “Where is God?  Why can’t I feel His presence and comfort when I’m in such need?”  “Have I offended Thee?”

In reality, my mind and heart burned with anxiety, stress, loss, grief, pain, sorrow, and sleeplessness.  It wasn’t that the heavens were closed against me, it was more that my own coping mechanisms prevented me from feeling God’s love and receiving guidance.  I had to get to a place of trust in what was happening, a place of calmness, and a place of repentance and humility before I could receive the answers for myself--that took months & months.

Meanwhile . . .heaven got through to me through you!  So often, you became the answer I sought.  You showed up at just the right time in email, text, or doorstep visit.  You said things in passing that answered my question. You didn’t even know that you were acting in behalf of heaven to get through to me.  While I sorrowed at the loss of my own access to God, I marveled that He did not stop in His attempts to reach me.  He just used you! Thank you for listening & for being His ministering angels.

Addie Update: Indignation & Prayers Please

Good morning Family & Friends--

Little Addie is in the hospital once more.  Her need for oxygen superseded the home equipment’s capability to help her, so we took her to the Pediatrian on Thursday. After 5 minutes, she said, “Take her down to the ER. You’re going to Primary’s.”

While they thought she had RSV, the tests came negative for both viral & bacterial infections.  However, the x-ray looks like she breathed some milk into her lungs.  So--at this point, she has no infection (viral or bacterial), but her diagnosis is Aspiration Pneumonia.  

Will you please pray for her little lungs?  She needs to either cough or absorb that bit of fluid in there in order to expand her lungs to their full strength and get her O2 needs back to a normal home range.  

Meanwhile, here’s some political drama we faced at the hospital.  We informed the medical team that we are using CBD oil to control seizures when asked what medications she’s on. We were told we could not use it for her at the hospital. We insisted that this is the only thing that is helping Addie’s seizures, that we are trying to get to a therapeutic dose, and that we will continue to use it. Without it, it will be difficult to get her out of the hospital as much of the lung stress we see with her is in relation to cough seizures which keep her from oxygenating well.   We were firmly told that if we continued to use it, we would be kicked out of the hospital . . . Addie would stay--parents banned!  NIGHTMARE!!!!  INDIGNATION!!!

Additionally, there is NO other hospital in UTAH that will take children.  Every child HAS to be treated at Primary’s.  We could not take Addie anywhere else & be able to use her CBD. To be threatened like that when you are trying to help and advocate for your child is so emotional and so wrong. This direction came from the very top--the lawyers, CMO, etc.  Our doctor bravely sided with us against the hospital administration, and told us to keep pushing.  We produced our paperwork that legally allows us to use CBD oil in the State of Utah.  You only get this paperwork if the doctors at Primary Children sign off on it!???!!!  He took a copy back to the leadership of the hospital and we waited.  Before 5 pm, our good doctor came back with a message that we can use it, but that we needed to be silent about it (so now I’m shouting it out to you! :-).  Because of  the paperwork, they could not legally stop us.

God is gracious and good!  Here’s why: A month ago, I utterly refused to file the paperwork for my hemp certificate.  I felt angry that I had to pay a bureaucratic fee  and jump through all these red-tape hoops to help my child. I thought, “I just won’t speak about it, and no one will know.” An article from the Desert News said that ⅔ of patients qualifying for medical marijuana do NOT comply with the paperwork requirements but use the oil anyway.  Parents I spoke with also said, “Don’t worry about it.  They can’t enforce it.”  Despite my entrenchment, the Spirit kept striving with me.  I felt prompted three times to file the paperwork.  I kept arguing with the Lord why it wasn’t necessary, trying to rationalize away the promptings and getting him to see my point of view.  After working with me for 10 days, I knew I could not go against the strong promptings and remain in good standing with Heavenly Father.  So, I gritted my teeth, wrote out the check, and sent in my application.  As soon as the check went in the mail, a huge weight of fear lifted from my shoulders.  I did not realize how burdened I felt regarding CBD oil.  I recognized in hindsight that I had been  under attack by the Adversary.  All those chattering voices in my head ceased.  My mind and heart cleared.  I could lift up my head and boldly share my experiences about medical marijuana with others.  No more fear energy.  I immediately felt grateful for the promptings and for the Holy Ghost’s continued efforts to break through my stubborness.

“Verily, thus saith the Lord unto you whom I love, and whom I love I also chasten that their sins may be forgiven, for with the chastisement I prepare a way for their deliverance in all things out of temptation . . .” --D&C 95:1

I was chastened by the Lord in my temptation/sin to not comply with the law. I thought I just needed to submit to the crazy law to be an honest, good citizen of my state and of the kingdom of God, but He saw a lot more than I did.  The paperwork became indispensable to me in enabling me to help and stay with Addie.  I just have to shout out there: if you receive a prompting--FOLLOW IT. The God who sees all things truly will ​​provide deliverance.  Additionally, He will “go before your face . . . will be on your right hand and on your left, and  . . . shall be in your hearts, and [His] angels round about you, to bear you up” (D&C 84:88). I have felt that this week.

Humbled once again to my core--

Desi

Addie Update: I am Home for Christmas!

Merry Christmas (a.k.a. in sign language) 

She's home!  Thank you to all the doctors, nurses, RTs, and staff who made this possible.  And thank you to all our friends, neighbors, family, and even strangers who have prayed her 'alive & home.' We love you!!

Onto the next mountain. . .  

--The Wightmans

 

Addie Update: (play the theme of Star Wars right now in your head)

A long time ago in a NICU far,

far away . . .

Addie

Wars

Jedi Addie squared her injured shoulder to once again meet

her formidable foe:  Darth Ventilator.

“Hwee, hwoo . . . hwee, hwoo,” he breathed.

“Addie--join the force of the dark lung!”

“Never!” Addie cried. 

Over one week, she took deep breaths with her pink lungs and ousted Darth

Ventilator’s power over her, moving from C-pap to High-flow

to nasal cannula, proving that this jedi is ready to head for her

home planet as soon as possible.

The Emperor Electric, however, still works in secret behind the

scenes to keep her in the NICU. Flashing Addie with pulses, he

tries to keep her seizures active, unmanageable, and back

under Darth Ventilator’s and Darth Medication’s evil clutches.

While Emperor Electric continues to hide in the shadows, 

his evil power will soon come to an end under the influence

of Jedi Addie’s Heavenly Father.

Another space journey looms for Jedi Addie & her family.  Her

past battles with Stormtrooper Hydrops caused intense

damage to her ears, and her hearing is severely to

profoundly impaired. Her home planet is now on a mission

to learn new skills in sign language to ensure they can

translate English for her and to ensure

she feels welcome when she arrives.

The battle continues . . . but Jedi Addie will win the war in 

large part to the power of the true force--the answered

prayers of her family, friends, and neighbors supporting

herself and her home planet. 

Till next time . . .

May the Spirit of God be with you . . . .  

Addie Update: In one word . . .

. . . . . . . . SEIZURES . . . . . . 

************

 Fast Sunday is "fast" approaching. If you can add our baby girl to your fast this Sunday, we'd so appreciate it.  We need help for the neurologists.  They are trying hard to find some combo of seizure meds for Addie.  So far no go--they need Heavenly help.  

And here's a Thanksgiving message I wrote this week for ThanksgivingHeroes.com. I thought you might lift the gloom from Addie's one-word update.  Love you all! --Desi

*************

I just stepped into home after a 12-hour day spent at the hospital when my son found me and said, "Mom--there's a firetruck outside our house with its lights on. "  

"Are you teasing?" He so loves to play practical jokes.   I felt too exhausted to "come and see" as he beckoned, but finally I realized he was in earnest.  

"They are probably just checking on stuff across the street. Or maybe we have a fire out back and they're coming to tell us." I knew I should've changed the 9-volt batteries in the fire alarms!  Sure enough, the blinking fire truck truly was parked outside our house. 

"Maybe they're lost!"  Then the doorbell rang, and two firemen stood on the porch wearing huge smiles and carrying an overloaded cardboard box.

 

"Do you have room in your fridge for this?"  I laughed and said, "No." They didn't listen and marched right in the door to the delight of the children and the confusion of the teenagers.  Setting the box on the counter, they said, "Happy Thanksgiving." We shook their hands in overwhelming surprise and bewilderment.  I asked my husband, "Who do we know in the fire department?" and we all laughed again.

After they left, our family gathered around the counter and looked in the box: an entire Thanksgiving feast stared up at us out of that deep box!  Instant cheer, a few tears, and a bit of chagrin showed on our faces.  "Are we on Random Acts?" my son asked.

We've spent 20 years nurturing self-reliance and getting to a point in our family where we didn't need to rely on anyone.  We like to be on the serving end, and it is hard to be in the position of need on any level.  We always know of someone worse off--never feel quite deserving.  The teens asked, "Surely we don't need this--who could we pass this joy to?"  My husband said with tears in his eyes, "This isn't because we're in need as much as it is because people love."  

We've spent the last three months nurturing our little baby Addie in the Newborn Intensive Care Unit.  We've stared at death twice as she has faced more set-backs than leaps forward. We are so grateful that she is alive and doing very well, especially considering where she's been and how much she has suffered.  We do not have a diagnosis; nor will we.  She's currently facing seizures that even adult medication cannot control.  It is frightening.  I cry . . . a lot.  We also have great hope that her life is purposeful and that her mission will be fulfilled.  We will help her through every challenge now and future.  We trust our Heavenly Father in this immense mountain she & we must climb.  

We wouldn't wish this on anyone, and yet my teenager said, "I hope when I grow up I have a NICU baby!" 

I marveled at the irony of her statement. Built upon the outpouring of love she's experienced from the kindness of friends and strangers, I feel tremendous gratitude. No one wants the accompanying challenges that spark such mercies, but how wonderfully humbling it is to find that in the midst of the mountain trail, you are carried on the wings of God's children. Lifting our spirits, our hearts, our hopes in all the goodness of mankind, you make it easier to ascend the peak.

We love you.  Thanks for Giving!

Chris & Desi 

All the kids got to hold Addie for the 1st time this week . . . 

Addie Update: The Never-Ending Story

. . .This is the story that never ends.

It just goes on and on my friends.

A mother started writing it not knowing what it was,

And she'll continue writing it forever just because . . .
(go back to the beginning )

        So-- 

So . . . so . . . so

Addie's progress is

     Very

S--L--O--W.

BUT . . . at least its in the right direction!

This week an x-ray showed clear lungs BUT. . . 

also a fracture on her right shoulder.

(Recall the MRI adventure in the elevator?)

Addie weaned her way down on morphine, BUT . . .

she still has 2 weeks to go until she's through with it.

She weaned down to C-Pap level on her respirator, BUT . . . 

when her breathing tube fell off her nose, she had no issues breathing on her own.

(Okay--it was like 45 seconds--we get easily entertained around here.) 

She continued to host more seizures, BUT . . . 

on Thursday, she didn't have any all day.

She made it (today) to full fat breast-milk, BUT . . .

she still has to get to 150 ml in volume from 120 ml.

She's on A LOT of drugs that she needs to outgrow, BUT . . .

she is growing now--she's up to 8 pounds!  

(Yes--I know she's nearly 3 months old).

We wanted her home for Christmas, BUT . . . 

The doctors say to expect "after the new year."

(Say what?  That's a pretty broad projection! Can you narrow it down a bit?)

All the babies she came in with graduated, BUT . . .

more recruits have joined her, and she now "looks" like the healthy one.

We are stretched in every way, BUT . . . 

you wonderful friends and family encourage us with your emails, prayers, concern, service, and most of all love.  

We hope you enjoy Thanksgiving, AND . . . 

know we will be thanking God for you, AND . . .

that our little Addie is ALIVE!!!!!

Until next week--this is the story that never ends . . . 

Man, I'm exhausted!

Who do you know that looks this great in a diaper?