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  Her need for oxygen superseded the home equipment’s capability to help her, so we took her to the Pediatrian on Thursday.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: Humble Pie--munch, munch!

A few months into Addie’s seizures, my friend Bridget called and said, “You may think this is kinda odd--but have you considered medical marijuana?”  My stomach dropped.  I replied, “Oh no!--that will be just my luck that that will be the only thing that works.  I’ve had to humble myself on everything else!  ” So munchy, munchy humble pie!  Thank you to Bridget for planting the seed that grew into our last hope!

At Primary’s, after Addie failed 7/14 seizure medications,  the neurologists told me that Addie qualified to use cannabis when I finally got up the courage to ask.  In the state of Utah, 1) if your seizures continue after trying at least three medications, 2) you receive a letter of recommendation/documentation sent to the State from the neurologist, 3) you fill out an application, and 4) you submit a $200 fee, then you can receive a “Hemp Card” that authorizes you to use medical marijuana for one year.  After that year, you continue to pay $50/year to keep your Hemp Card active & if you let it expire? $200 again!  Additionally, you must keep a laboratory analysis of the hemp product you are using to confirm that the medicine falls into the strict guidelines for CBD to THC  (medicinal vs. psychoactive parts, respectively)  ratios in medical marijuana.

The price for a 1 oz bottle of Hemp Oil ranges from $35-150.  The pricing and fees nearly scared me off from attempting it--the neurologist didn’t seem that confident that it would work for Addie.  A friend, whose child has seizures,  however, offered me a sample to test on Addie.  I placed the sample on my desk and “ignored” it for two days.  I felt so afraid of trying it only to have the neurologist’s predictions verified--that it wouldn’t help her. I didn’t know if I could face my last thread of hope taking flight.  

Finally, after days of watching my baby seize, we decided to try it.  I held Addie in my arms and uttered a prayer toward heaven as Chris dipped his finger in the sample and rubbed it on Addie’s gums.  Within seconds, Addie’s rolling eyes stopped, centered, and focused on my face.  She made a cooing sound and a giggling sound.  For the first time she seemed like a real baby--a healthy baby.  She was there--in my arms--her body and spirit connected and present.  I just wept. She stayed with us for about 40 minutes before the seizures began to take over again & she fled.  I felt so much awe and humility.

After complying with State laws, we started Addie on a beginning dose of CBD oil last Friday.  At the end of week one, her eyes have mostly stayed centered, she’s gained more rigidity in her limbs (instead of floppiness), her seizures have nnoticeably decreased, and she’s been very sleepy--restful sleep.  We are only on a beginning dose and we have a long way to move up the scale in hopes of finding a ‘sweet-spot’ where we’re hoping the seizures will perhaps disappear altogether! Prayers ascending!!

So back to my dish of Humble Pie!  I remember driving in my car last year listening to a debate on medical marijuana on talk radio and saying aloud: “Give them an inch and they’ll take a mile!”  I mentally entrenched myself against any legislation on marijuana in Utah.  I never researched it.  I acted completely out of prejudice and ignorance.  And, while I never spoke publicly regarding this issue, I’m publicly apologizing.  I’m sorry that I never even considered the opposing side to the argument,  and I’m sorry for my ignorance and callousness to the intense suffering of  so many parents as they stood helpless over the seizing children with no options except TERRIBLE seizure medications. Finally, I’m committing to never speak on any issue again until I’ve heard both sides and actually researched it!   

I stand on the shoulders of so many here in this state who pushed for this option for people.  I feel intense gratitude and humility once again that I have access to this medicine without having to pack up and move to Colorado.  Parents waited YEARS for this option, and I only had to wait a few weeks to receive authorization from Neurology.  Epileptic children marched ever more toward physical and mental disability, increasingly addicted to ridiculously harmful seizure meds, as their parents persistently marched on Capitol Hill to get access to medical marijuana in Utah. I am undeserving of my blessings.  Because of their efforts, Addie has a chance to get control of her seizures, wean off her brutal seizure meds, and progress toward more normalcy.  I’m humbled to my core.

As this legislative session is upon us nationally and in our states, I hope you’ll share my experience with people so that only I have to swallow humble pie.

Lastly (and Firstly), I acknowledge the Creator who truly did  fill the earth with “excellent qualities of the many plants and roots which God had prepared to remove the cause of diseases, to which men were subject” Alma 46:40 . His name be ever praised as the Mighty Healer and Great Physician.

--Desi