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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.

11.09.2013

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!!

6 comments:

  1. Us FCC'ers would have been cheering Miss Mags on with her cooing. Miss you three!

    Kitty

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  2. It brought tears to my eyes to hear about the improvements already! Go Maggie! Record some of that cooing so we FCCers can enjoy it too. Love you guys.

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  3. Yay for glimpses of hope! I heard that CO just passed a 25% tax on marijuana sales. Will this affect you?

    BA

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  4. Love you and praying every step of the way.

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  5. I believe the tax is for recreational sales

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