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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.


Turned a corner and Dr. Sanjay Gupta and a handful of pictures

Yes, you read that correctly, Dr. Sanjay Gupta, chief medical correspondent for CNN, was in the house!!  Not our house, but a house we were in.  He is preparing for another documentary, WEED 2.  He is aiming for this one to be more medical and scientific (traveling to Europe and Israel for research), but he is also going to highlight this crazy migration to Colorado, all the families moving to gain access to an amazing treatment.  Our Realm family get togethers are always so wonderful.  It was pretty neat being able to welcome Dr. Sanjay and his crew into the craziness.  They were only going to interview a few families, us being one of those few.  But, as he went around, everyone began to share their story with him.  The love and care he showed for each children was SO sweet.  We waited patiently as he made his rounds and we actually ended up being the last interview (around 10:30), so it was quieter and we were able to sit at the table and just chit chat a bit.  He is just as nice in person as you would expect.  At one point during our interview, I even noticed his eyes start to tear up.  His heart truly is in this!
This is what it is all about!
From talking with him after the interview, one thing that was really impressed upon me was, we've got to get people to answer the question...either it is medicine, or it's not.  From my vantage point of all the children it is helping and other individuals I know it has helped, it CLEARLY is medicine.  (I won't go off on a tangent about ignorant people, though I easily could)
One last funny thing about the interview.  Most interviews I just wear the mic and then sit with that side closest to Shawn.  The camera guy pointed out that we wouldn't be able to pick up Shawn at all.  Shawn's response was, "that's ok, she does all the talking anyway."  We decided to put a mic on him anyway.  After the interview was over, the crew pointed out, "I thought you weren't going to say anything Shawn."  He had plenty to say!!
WEED 2 is expected to air sometime in the Spring, probably March.  Don't worry, we will keep you posted as we know more!! 

Hanging with her buddies!
In other news, Maggie seemed to turn a corner on Monday.  However, after I posted about our trials on Saturday night, she slept through the night!  (I knew y'all would be praying for us).  The only this is, is that this hadn't happened in quite a while, so when I woke up at 5:00 am and realized she hadn't awoken and  given her condition over the past few days, I was really concerned.  I got up to check that she was in deed still breathing, and she was.  Shew!  The reality of uncontrolled epilepsy is that any given night could be her last...then again, that is true for all of us.  Some just have a higher risk factor.  (I could go off on another tangent about deaths from uncontrolled seizures vs. deaths from marijuana overdose...oh, that's right, it's zero from marijuana!...I guess I did go off on the tangent :))
At any rate, we did up her MMJ just a smidged and she got her spunk back.  And since, we have continued the Zonisamide wean.  And, again tonight I noticed a bit more irritability out her.  Thus, the rollercoaster ride continues.  Until all these toxic drugs are out of her system, I think we are in for a ride.  Hopefully, by Saturday we will be about 1/2 through this wean.  After Zonisamide, we only have 2 more to go, which could each take a couple of months....Grr!  We are in it for the long haul though, with the big picture in mind!!
This week, Shawn started a temporary job doing some after-construction cleaning.  The next couple of weeks might be a little crazy juggling him working and me working, but we have a great small group that is willing to help with Mags as needed when we overlap, and we need the income!!

Also, we finally got the final word that Shawn had been accepted to Seminary.  We were banking on it, so good thing there wasn't a curve ball with that!  Now just a couple more weeks and we should be able to move into on campus housing, which I can't wait to unpack and get settled.  Mags and I have been in transition for nearly 2 months now.  That also means we might get back into a routine and get her program started back up again!

Our sweet friend Holli lovin on the Magster

THE Charlotte of Charlotte's Web

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