About Us

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Shawn, originally New Yorker, transported to Tennessee for a few years, chased the love of his life in Iowa, only to move her back to Tennessee. Rachael, small town Iowa girl that traveled the globe to find her love in Tennessee. Little did we know how much our lives would change when Little Miss Magdalyn Joy entered the world. Join our journey through the unknown of Maggie's medical issues, known truths of God, and the nuts and bolts of life.


Getting a little more established

Lots to write about this week.
trying to catch that glimpse of a smile
First off, a gal from our small group works for WorldVenture, a missions organization.  They have guest rooms, suites, and condos for missionaries to stay in while they are back.  Fortunate for us, one of the suites won't be in use for the next month.  What that means for us is we were able to move out of the "on top of one another" extended stay into some pretty deluxe accommodations.  We kind of feel like we are staying at a ritzy 5 star hotel, that we could never afford.  And the best part is that it is cheaper than the extended stay!  More space, nicer, and cheaper=Win, win!  So we moved on Wednesday.  Yeah for the body of Christ working together!  Have I mentioned how much we LOVE that God had prepared our new church and small group for us so we would fit right in.  He knew that was a vital component and has blessed us tremendously!  (Not that we don't miss our old life group-cuz we do!  Y'all just gave us the something more to strive for!!)

From this....
....To THIS!!!

My sister attended a panel discussion on Medical Marijuana back in Iowa.  Before she went, she was nervous about not knowing what to say or really even wanting to speak up, but the discussion lended itself to the opportunity for her to pipe in when a question about "the baby in the newspaper" (Maggie) came up.  And I guess Brooke had more to say than she thought.  By the end of the night she was having to tell herself "you don't have to comment on everything".  Way to go Brookie!!  A neat thing was that one of the senators on the state level, actually had my letter in hand at that meeting and talked to Brooke a little more about our situation!!  We're glad she went to represent!  And, awesome that I have the ear of a few legislators, now we just are awaiting the big results to be able to knock the socks off everyone!!
Yesterday we did another interview with a reporter out of the Springs...Channel 5 NBC, should be airing Sunday evening.  We are determined to be loud in sharing our story and allowing reporters to walk the journey with us, not only for us to visit family, but for all the families that are not in a position to up and relocate.  We are so fortunate to be in a place in our lives where the ship really could have sailed anywhere.  Not everyone can up and move, and it is heart wrenching talking to those parents when they know there is another possible treatment option but they cannot access it for their child!  Laws need to change!!

Yesterday we also went to new therapists.  Everyone knows that Piotr and his team are irreplaceable to us, but God has still blessed us with 2 sets of new hands.  We are paying out of pocket for now, because we know how extremely valuable the manual therapy is for Maggie.  However, we are not positive insurance will even cover it once we get that all established.  Please be in prayer for this, as we were so blessed to not be financially limited by our visits to Piotr while in TN, and for her, we can't be limited here either.  I know it is alternative, but I've said it before, IMT is why Maggie is still with us today.  Shawn and I are confident, that if God hadn't led us in that direction, we probably wouldn't have celebrated last Christmas with Maggie.  We would trade all the other services available (because Mom will be doing most everything anyway) to have IMT covered!!  Our new therapists were great.  They both have MANY years of experience and were a satelitte location for the headquarters for a while.  So highly skilled, and Momma has seen enough in this field, that I can tell, they'll be a great fit for Maggie.  There are still a few more IMT therapists in the area that we plan to check out, and we may end up bouncing around a bit for a while.  The beauty of this therapy is that varying hands could pick up other things and though there is benefit to an ongoing relationship, each treatment can stand alone.
So, I have mentioned how they can "test" things on Maggie.  All the food Maggie eats has been "tested" and proves to be good for her body.  This testing is similar to muscle testing, but really is motility testing, feeling if systems pick up or are bogged down when introduced to something.  So...I have been hesitant to test the CBD on her.  In my mind, I have dealt with the predicament of what if it doesn't test well on her.  I would rather not know, because we should really not subject her to it if it doesn't test well (I think of it like being conscious of our sin.  If you don't know the law, how can you be expected to live by it, but once you know the law, you are accountable to it).  So once I know something doesn't test well, it is foolish for us to keep giving it to her.  But, if it doesn't test well, then it's crazy what we just did to get out here and would I just stop the CBD...yadda yadda yadda!   On the flip side of that, I was rather anxious to know which systems and how it actually was benefiting her, as well as test the other drug interactions.  Well, based on the already positives we had been seeing, we decided to test it and....the therapist was shocked at how well it opened up and organized some of her brain motilities!!!  Woot woot!  Also, while checking the other meds, it was clear which one was restricting the cannabis's full potential the most and overtaxing the liver, which was no surprise to us based on what we know about CBD and this drug both being processed through a particular liver enzyme.  I always figure it's kind of a crap shoot on the neurology end trying to decide which drug to wean first, but I really feel, as parents, using all the tools in our tool chest, we are able to really be the ones in the driver seat and work with the various practioner's to make our recommendations for her treatment and thus weans!!  Hopefully our new neurologist is as great as our last one with trusting our instinct and listening to our suggestions.
At any rate, I am thrilled to know the positive impact the CBD has on her overall, on top of what we are already seeing!  I know this is hard for many to wrap your mind around, but we know the effectiveness of this therapy and trust the hands that work with her, with no reservations!  I often debate how much to share about what therapy hands "pick up" in a sense, but between the things we already know from the Western med side and is confirmed through the feeling of motilities is always so exciting to me!!!  Like I've said before, now I am even more confident that the CBD, in combination with her manual therapy and Family Hope Center program are going to be her trifecta!!  (That just means we've got to get the program up and going again...come on Momma!). Also, I think knowing we are on the right track with the cannabis might actually help me slow the process down even more.  We are so anxious to see the immediate results, but, allowing her body to appropriately detox and not push things too fast, may be the overall best for her little body!

On the job front, we still won't have everything lined up for me to take the CNA training for a little while, so we both have been searching for anything we can.  Shawn's a little discouraged, because he has walked in and applied to multiple places and I only applied for one and have something secured.  Granted it's a seasonal position and a little kooky, but it's a little something to gain some income.  For the holiday season, I'll be an elf, basically a Santa helper for events and meet and greets through the holiday season.  Kinda fits my past well, entertaining and interacting with kiddos while they await their special time.  I'm sure me walking out of the house every day will be rather entertaining too.  I should know more after an orientation on Sunday.  In the meantime, please join us in praying for a great position for Shawn.  Right now he just needs something, even if his is just through the holiday season as well.  Eventually though, he will need something more flexible with school.  The real trick is knowing how we need to balance out taking care of the Magsters when neither of us has any sort of schedule at this point.  I'm sure it will all come together.  And it's a brief season until we really get situated.

What most are probably reading for is to know Maggie's progress with the CBD is going.  As I have mentioned, her awake seems more awake and she seems to be sleeping more soundly.  She was more vocal at the start and overall more active.  I think the past couple of days we have been dealing with her toxic load and need to keep all these things in balance as we continue to move forward.  Another big excitement is that her poopies have kept moving quite well.  In the past week, since starting cannabis, she has only had 2 days without poopers!  That's great for us!!  Just before starting cannabis, she had 5 days of constipation.
And, she does seem to have the munchies, which is great, since she has been having trouble getting over the 17 lb. mark.  All in all, good stuff!!
And, just tonight, we saw a slight glimpse of a smile.  She just seems more content in her body.  I have a feeling the smile will be coming back for good in a while!!  Until then, we will continue to be patient!


1st days on Charlotte's Web

I know many are anxious to hear what results we are seeing with Maggie.
Thursday I received the email that her oil was ready for pick-up.  I buzzed down to the Springs to pick it up.  Channel 13 joined us on the journey for the day.  Watch here!
The staff at the "indispensary" were wonderful. I will take this experience any day over the stressful, hair-pulling nightmares of experiences I have had at Walgreen's over the past year and a half.  They were so sweet!  We were actually the first Realm oil purchase at the east side location.  They were as excited to be part of the process as I was.  I can't wait for them to meet Maggie next time and see who they are helping.  However, the reality of it was that I was still in a marijuana dispensary.  It seemed a little surreal.  I know the cost was brought up multiple times with the interview and is quite shocking at how inexpensive our month supply is.  A couple of things with our low cost at this point.
A) we are starting at  a low dose and working our way up, so in the coming months, she will likely need twice the amount we purchased this month.
B) she is little and dosing is based off weight.  As she grows, so will the expense
C) The Stanleys are committed to keeping the costs as low as possible for our special Charlotte's Web kiddos.  The thriving dispensaries help make it possible.
D) The Realm of Caring Foundation, volunteer based, is tremendously instrumental in resourcing and educating families.  The Realm is also key to fundraising to offset the costs for families.  Please consider making a donation to help keep these costs down for Maggie and all the special kiddos!!  Donate to the Realm!

Maggie with her cousins-Ava, Myka, and Ella
One final thing about payment for Maggie's new medicine.  We have had amazing friends and families helping to support us throughout our entire journey, making all kinds of treatments available to Maggie.  It is such a blessing for us to have the opportunity to be the recipient of God working through others giving hearts.  It is consistently amazing to see how some with little give so much to help Maggie out.  Truly cheerful givers!  While in Iowa, Maggie's cousins, Ava (6) and Myka (4), selflessly gave some of their own savings to us to help for Maggie's treatment.  To quantify it, Ava and Myka have paid for the first 10 days of Maggie's treatment!!  What a blessing!!

So, what are these first days looking like.  As I type, she has been on the oil for almost 48 hours.  We gave her that first dose and watched with anticipation.  All that we have worked for over the past few months all of the sudden became a reality.  The day we have been waiting for.  And then...she started talking and walking all around the room!............Just kidding!!  Wouldn't that be amazing?!  Not impossible, but not our case.  It is so hard to be objective in observing her because there is so much anticipation built in.  We definitely notice a difference, but it's hard to detail.  She has been much more vocal and expressive with her coos.  Last night we went to and Q&A tough questions event at our church (which was great!!  Denver Seminary professors that Shawn will study under).  Our home church in Tennessee got used to and many were so encouraged when they would hear Maggie's coos, because it was such a blessing to our ears.  Last night, at a new church, not everyone knows us yet or has grown to have that same appreciation, and here Mags was quite the little loud mouth!  FCC'ers, you would have had a hayday with her outbusrts.  Instead, we were trying to shush her a little as to not be a total distraction with our unruly toddler!! :)
We both agree that she is tremendously more alert.  Her awake is much more awake, and when she sleeps, she seems to sleep more soundly.  For our heavily sedated little girl to stay awake most of the day, was crazy...crazy enough that I am a little concerned we might have an insomniac on our hands.  We usually bring her jammies if we go somewhere later at night and she will just fall asleep and snuggle in our arms.  After the thing at church, we went over to our new friends' house to hang out.  Little Miss took a little doze, but the little stinker was wide awake late into the evening.  Luckily, she made up for it a bit with a good nap this morning.
As for appetite....she has the munchies! :0  She demanded a snack at 4am, and nursing didn't quite do the trick!  She's been taking in quite a bit more at her meals too!  This is great for the Little Miss that can't get over the 17 lb. mark.
Seizures....we haven't noticed much difference.  The number of spasms are so hard to track and count.  We will being spending a day with the lap counter every couple of weeks to try to get an accurate count and monitor the number of spasms.  When she wakes up from sleep, it doesn't seem nearly as painful though, and I do think the clusters are somewhat lessened.  So hard to tell though.
Overall, we are seeing some good responses so far.  We're not really sure what we are getting ourselves into though, when she becomes a typical toddler.  We are going to have to step it up in setting boundaries and getting a good routine in place!!


The Grow and a go, go, go day!

Yes...that's a bunch of weed drying behind us.
Daddy made it to meet up with us.  It's great to all be together again!
Literally, he parked the truck and trailer and hopped into the suburban with us to head to Colorado Springs.   There were a few different things we were meeting up with other Realm families for, but the entire day seemed like we were late for this and then late for that.  As great of a day as I had expectations for, it kind of left me disappointed.  Maggie was struggling with day 5 of no poopies, which caused for a cranky little girl.  Finally, mid afternoon yesterday, she was able to take care of that situation, but after that many days it proves to be a whole painful ordeal.  Then she was starving which where we were at the grow was not the most conducive for that.  Needless to say, she was not camera friendly yesterday.  There were a couple of news stations following the group around, and the daytime show The Doctors.  I think we managed to avoid most of the cameras with being late to everything and the little fussy butt!  There were plenty of other families there sharing their stories though.
All in all though, it was great seeing the grow and hanging out with other Realm families.  As you can see from the pics, the process of becoming Maggie's medicine is definitely a process.  Not a marijuana connoisseur, it was rather impressive seeing all the various plants and seeing the process, not to mention the aromas.
The best part was talking with and hanging out with all the other families.  Though we only briefly met some of these families when we first came out and all correspond on facebook, it's like seeing old friends, embracing one another and so excited to be on this journey with each other.  Hearing the stories of the results families are already seeing that have recently started the oil is SO encouraging.  We will all have stories to tell, and these stories are going to be the ones that change the laws.
I'll share just a couple:
A boy that wouldn't engage or string more than a couple of words along, sits in the car and tells his mom, "looks like it's just you and me mom" and is now constantly pointing out the window, "oh...look at the trees.  See that mountain"  He has smiles and is able to engage and play with his brother now.  He has only been on the oil for maybe 2 weeks, and the best part...Yesterday he was 48 hours seizure free!!
A three year old little girl that has spoken much of anything for the last year and a half said "Mommy" the day after starting treatment!
Encouraging, eh?  AMAZING!!!  Disclaimer: As encouraging as this is, it could also get worse before it gets better.  We could also experience a honeymoon period and then get yucky before it builds up in her system.  Basically...I just try not to have any expectations of what's going to take place.  I am preparing myself for it to get worse first, but would love to be pleasantly surprised with results like these.
So, where are we in the process?!?  We had a little hang up with the red card not getting to us so our original order for oil was canceled, but then, once we were able to track down the red card,  I resubmitted the order and was able to be back within the original batch.  We were supposed to be able to pick up the oil yesterday afternoon, but the lab results (all the oil is tested before we get it) were not back yet.  So, crossing our fingers...we should be getting it today!!
We have a couple of news stations that want to follow us and document our journey, so they will be joining us for a portion of our day too today.

Last night, we rushed back to Denver and joined our new small group at church.  It is great to have a new church family already loving on us and supporting us.  God truly has been in the details of orchestrating this situation so we wouldn't be floundering.  The small group seemed to be a great fit and we can't wait to get involved!!

As for housing, we are in an extended stay currently.  We only have to survive the next month or so of being on top of one another without killing each other.  Good luck with that, right?!  We should have housing available to move on-campus December 15th.  It ends up that we will be having a little bigger apartment than we initially planned, which means we will definitely have room for visitors!!