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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.


3 months in and 30% reduction!!!

As promised....we take a break from medical marijuana advocacy to bring you the not so regularly scheduled Maggie updates.
We have one tough little cookie.  Ironically, early last week I was bragging to my grandma that Maggie and my immune systems were going strong and we had avoided the nasty bug Daddy had the previous couple of weeks.  Then bang...the next day she was struck down with a cold and fever.  She was feeling kinda puny.  But, I felt like it passed fairly quickly and wasn't all that bad.  Two things....definitely prayer, because she took a turn for the better once we rallied the troops to start praying.  And....her cannabis oil!!  The one night she was really feverish and doing this weird shaking.  I was having trouble discerning if it was seizure activity or just the chills really bad.  We decided to go ahead and give her a little booster dose of CBD.  Then Mags and I went to bed on the couch.  She woke up a couple of hours later...fever had broke and she was much more chipper.  We still have a lagging cough that we'd like to see go away, but overall, she was quite the little trooper with that cold.
Seizure counting...On Sunday, we took the clicker and counted every spasm and myoclonic jerk to get an assessment of her seizure activity.  She has been on Charlotte's Web for 3 months now and we knew we were seeing a reduction.  Before now, we just didn't think it was worth the time to take the clicker and watch and even feel her every move.  However, we did want the data to be able to quantify and share her progress.
Before I go any further let me remind you of the last time we did this. It was while we were back in Tennessee, just shortly before we moved.  At that time,we got to over 500 (combination of the Infantile spasms, which are generalized seizures, and then the myoclonic jerks).  It was so discouraging, but confirmed our decision to move.  When we got to 500 Shawn threw the clicker on the counter that evening and we stopped counting.
This time around, I realized quite a few things.  Maggie is much more active than she was previously.  When we counted before, nearly any movement she had was some form of seizure activity.  This time I had trouble discerning intentional rigid muscle movement from seizure activity.  I also realized how difficult it is to be objective with this.  Of course I want to know she's having less, but I really tried to err on the side of...if I was in question, I counted it as seizure stuff.  We also were coming and going much more than last time, but I added extras in for the assumption that I missed a few while in the car, etc.  If anything, I over-counted this time.
So the final total for the whole day was just over 350.  Yes, a little depressing still, but she's had a solid 30% reduction in her seizures, all while eliminating a seizure med, getting over a cold, and teething (these stinkin incisors have been working their way in for the past 6 months...grrr)  We are ecstatic with her progress.  One other thing to note is that the intensity of the spasms have clearly decreased as well. And we still have quite a bit of room to increase the CBD and have 2 more seizure meds to get out of the system.  I looked at Shawn the other day and said..."she is one tough little cookie.  When you think what all her body is going through, it's pretty amazing how strong she is!!"
And then tonight, she worked hard to try and mimic my clicking.  We know she's in there...just waiting and working on coming out!!  As Shawn said while admiring this little sweetie...It's a hard knock life!!


Government 101 Refresher

I just realized the other day, I keep saying CONTACT YOUR LEGISLATORS, but when I first started this whole contacting our legislators process, I had to delve into the back corners of my brain to reeducate myself from a high school class that I probably should have paid closer attention to.  I definitely have vested interest in medical marijuana legislation and reform taking place, and so it was worthwhile for me to reeducate myself.
Allow me to pass along this refresher to make it a bit easier for you to bite off.  But, the disclaimer is that I never aced my government classes...obviously.  Feel free to correct me if I misspeak here!!
I'll start at the Federal Level, though it is very similar at the state level...
President.  I hope we all know that this is Barack Obama.
Senate...made up of Senators...2 from every state.
        Iowa's are Chuck Grassley (R) and Tom Harkin (D)
        Tennessee's are Bob Corker (R) and Lamar Alexander (R)
House of Representatives...made up of representatives...this is based on population.  Each representative covers a particular congressional district and represents those people at the federal level.
        Iowa-Bruce Braley (D), David Loebsack (D), Tom Latham (R), Steve King (R)
        Tennessee- Phil Roe (R), Jimmy Duncan Jr. (R), Chuck Fleischmann (R), Scott DesJarlais (R), Jim Cooper (D), Diane Black (R), Marsha Blackburn (R), Stephen Fincher (R), Steve Cohen (D)

Bills could be initiated in either the house or senate, but have to pass through all three to go into effect.  All of these individuals are legislators, because they create and pass the legislation.

The state works very similarly just on a scaled down level
        Iowa-Terry Branstad
        Tennessee-Bill Haslam
Senators...I'll just list a few from the areas we know lots of people.
        Iowa-  Waterloo/CF and surrounding areas-  Bill Dotzler (D), Jeff Danielson (D), Brian Schoenjahn (D), Bill Dix (R),  Steve Sodders (D), Iowa City and surrounding areas--Joe Bolkcom (D) (introducing the bill),  Sandra Greiner (R), Robert Dvorsky (D)
        Tennessee- Greenevile area- Steve Southerland (R)
        Iowa-  Waterloo/CF and surrounding areas-  Bob Kressig (D), Walt Rogers (R), Anesa Kajtazovic (D), Deborah Berry (D),  Sandy Salman (R), Pat Grassley (R),   Iowa City and surrounding areas--Sally Stutsman (D), Vicki Lensing (D), Mary Mascher (D) Bobby Kafmann (R)
        Tennessee- Greeneville area- David Hawk (R)

You can use these links to plug in your zip code and find your legislators.  There are some fun maps to explore too.  State level House and Senate are the big ones right now. 
         Iowa- https://www.legis.iowa.gov/legislators/find
        Tennessee- http://www.capitol.tn.gov/legislators/

Now the part where I continue to need to get clarification is about committee, subcommittee, etc.  Basically, what we need to know is that the bills need support from all sides to keep moving forward and actually become anything.  February is a critical month, because by the beginning of March we will know if these bills die in committee/sub-committee.  That is why we need each of you helping with the convincing and educating.
Please take the time to find your legislator and contact them.  In a nutshell (and it really could be this concise), you are contacting them to say...
 As a voting constituent in your district, I want you to know that I am in favor of a well regulated medical marijuana bill.  Please be sure to represent my views accordingly.

If you want to do a little more research and share that with them, then by all means, please do.  Feel free to share Maggie's story if you want or have them contact me for more information.  Or if you want me to contact them directly after you have spoke with them, that's fine too.  I have gone back and forth on this a lot though.  I don't want legislators to think it's only about Maggie, if that's all they are hearing.  I recommend if you know of someone else that could benefit from the medicinal use of marijuana (glaucoma, MS, PTSD, any neuro degenerative diseases, cancer, etc.), please share that story with your legislator.  Then if you want to slide in this sweet little girl you know benefiting, then go for it.  Just some food for thought.  The basic gist is that legislators are saying no one is contacting them saying they want this (which we know some are lying).  We want to make sure they can't have that excuse anymore!!
A letter or phone call gets noticed better, but email is better than nothing.  If you are really ambitious, all three is the best!!
As the climate continues to change, I might be throwing out specific areas that need to be targeted.  Please step up to the plate and help all the critically ill people out that can't spend the time lobbying because they are just trying to stay alive.  I'd love to hear feedback as you communicate with them also, so we can continue to gage the climate.
You'll find my latest comment is "Have you contacted your legislators yet?"   We are elated when we hear..."yes, yes I have"  Make us proud of our peeps!!

p.s.  I will post about Maggie soon too.  She's holding her own right now :)