About Us

My photo
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.

12.06.2013

IOWANS:: Please read!!

As a group of us step up our efforts in prompting legislative change in Iowa, I need your help.


First of all, we need EVERYONE to contact your legislators and voice your support for the legalization of medical marijuana in Iowa.  Here is a link to Find Your Legislator!.  A call would be great.  A hand written letter would be great.  If you need an idea for a form letter, email me and I'll send you one.  The more personal you can make it, the better!
Second of all, if you or someone you know has what could be a qualifying condition and would benefit from the medicinal use of marijuana, I need to hear from you.  This list includes, but is not limited to seizures, cancer, glaucoma, chronic or severe pain, muscle spasms, multiple sclerosis, HIV, PTSD, Alzheimer's, Parkinson's, GI disorders, Hep C, etc..
Finally, if you are in the medical profession (doctor, nurse, pharmacist, dietician, etc...) and are in support of medical marijuana, I need to hear from you.

Please email me at theselmeskis@gmail.com
Include:
Your Name (or if you prefer just first name/last initial)
Phone #
Address
Email
A BRIEF (1-2 sentences...paragraph at most) statement about your condition and desire for legalization
OR
A BRIEF statement to show you medical view

I probably will not include all that info, but at least I'll have it if I need it.

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




12.01.2013

Some wind out of our sails

Before we headed out here, I tried to make it very clear that I anticipated things to get worse before they got better.  I think I need to tell it to myself a bit more, because I am not so sure I want to accept it.  The last couple of days haven't been so great.  We have been in the process of weaning her Zonisamide, and there is a lot of toxicity for her body to deal with throughout any wean.  The tricky part is increasing the MMJ enough to have some seizure control, without prompt too much detoxing.  Unfortunately, the delicate balancing act is a little off kilter right now.  I'll get to that in a bit.  The good stuff first.

Some of our new wonderful friends and the whole family took us in for Thanksgiving.  We had a blast and just felt right at home with their family.  At one point, the sister was afraid that we thought their family might be too overboard and we might think they are CRAZY.  Are you kidding me?!?  It would take some MAJOR craziness to come anywhere close to competing with our families!! :)  It's amazing how God prepared people to embrace us when we arrived here in Colorado.  As Sheri was bringing me home at midnight, after our shopping adventure and LOTS of laughter, she said to me, "It feels like I have known you for longer than 3 weeks.  I think God might have had a plan in all this."  So true!  It's great to find couple friends.  Shawn and Danny click, particularly in some of their oddities...oh...and the Worship arena too!  And laughter abounds when Sheri and I are together.  What a TREMENDOUS blessing this family has been to us!

So, we were sitting at dinner having a grand ol' time, almost finished up eating.  Maggie was sitting in her seat right up next to the table, but she was napping.  Shawn taps on me to look at Maggie, and there she was having little convulsions, lips smacking, awakened from her nap by an ugly seizure.  My heart sank.  We haven't seen this type of seizure for quite some time.  The look of shock and fear post ictal reminded me of the ugly beast we are dealing with.  It only lasted about 20 seconds, but that's quite the killjoy to such a great afternoon.

Sweet Little Bug
But that's not all...a while later, when I was feeding her, I started to bend down to pick up her spoon, and she had a spasm, hitting her head on the corner of the table.  Way to go...Mom of the Year Award right here!!  In all honesty, I am shocked that it has taken this long for something like that to happen, the way her spasms come out of nowhere and can be so forceful.  I think it sounded a lot worse than it was.  She was fine after a little bit of ice and some lovin.  Now, if the tonic-clonic would have happened after the table, then ya, I would have thought it caused something, but the seizure beast unlocked on it's own.  This little bump is the least of our worries.

The last couple of days, she has seemed to be dealing with processing a lot in her body.  She's been feverish, was a little constipated (though we did get some poops today), her eyes have been fluttering a lot, having troubles falling asleep, and just overall OFF!  She's had a couple more what seem to be tonic-clonics that bring her out of sleep too.  There are so many irons in the fire right now...colds going around, therapy bringing more toxicity to the surface, zonisamide wean...the list goes on.....
Overall, quite discouraging, but we stay the course.  We knew this could happen.  Now we just have to keep working through it.  But, I also know the power of enlisting all our prayer warriors, and though I can't wait to share the "seizure-free news" someday, I know that God is working through our entire journey.  I have seen it time and time again, when I am transparent and share our darker moments, our prayer warriors step up to the plate, and God honors those faithful prayers.  Please join us in praying for stability for her little body.

I know it may seem odd for some that I am able to sit here and say that we are so so thankful for so so much.  We have had tremendous blessings come out of this crazy journey.  And, there is no doubt this is where God has a planted for this season.  As it was pointed out in the message at church on Wednesday night, we are called to be thankful IN all circumstances, not necessarily for the circumstances themselves.  It was interesting when I scrolled through FB Thursday morning and saw post after post from all the Realm families that have moved away from their families to help provide a better life for their children.  These families are the people I know that probably have some of the most CRUMMY of circumstances (have critically ill children, in transitions, away from all extended family and in some cases the nuclear family is split up for the time being, taking pay cuts, or not finding jobs, moving from established homes to small apartments), and yet these are the ones with thanksgiving pouring from them.  What a testimony to being thankful in ALL circumstances.
How can you not be thankful when see this magnificent sight everyday!