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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.

4.07.2014

Marijuana is a stepping stone....but what about the MIRACLES!?!?



The past month/month and a half, I have been dwelling on some things.  As a family, I feel like we have replaced praying for the BIG miracles that God can and will do in our lives with a simple tool that He has provided us.  We have put our hope and stock in marijuana at the cost of continuing to expect to see God do even bigger things in and through Maggie.  Don’t get me wrong here, we are delighted with the things we have been seeing with the oil and celebrate the progress she has made.  However, marijuana is not Maggie’s miracle.  It’s explainable, it has science behind it, and a purpose for why it works.  A miracle is unexplainable to the point that we step back and say “It could only be God that did that”.  The way in which God led us to Colorado…that could be considered a miracle.  However, the cannabis is a tool in our repertoire, a God created tool that can do some pretty amazing things.

Early on in the journey we came up with “Miracle 4 Maggie”.   Have we settled for the inch stones of progress (which are great) when God is waiting for us to ask Him to do true MIRACLES in her life??  Can He do the miracles without us asking??  By all means.  I have a feeling though that if Maggie wakes up tomorrow seizure free, walking, and talking, or some variation of that, it would be easy for us to give the cannabis oil all the credit.  We have been studying God’s GLORY the past few weeks at church.   
God wants to do the inconceivable, the uncommon, the unexpected, the remarkable, the incomprehensible!  God loves to do the unexplainable! Why?  Because when God can be the only explanation for what occurs in our lives, something incredible always happens! GLORY!! 
We will not see His glory until we are giving Him glory.

Will we praise Him when Maggie is healed, or will we say “look what the cannabis did”??  My hope and prayer is the first, but my sense is the last has been true lately.  How can we shift our attention??  By drawing our attention to the One that can and will heal our little girl.  By not allowing our prayers to be watered down to “God please let the marijuana help Maggie.”  By petitioning Him for greater things that are unexplainable.  By anticipating the true Miracles.

*****My ask for all of you is to join us in an effort to truly seek God and request some big things from Him.  Please set an alarm on your phone for every Monday at 5:30 MST/6:30 CST/7:30 EST/4:30 PST.  Allow that alarm to be a reminder to pray for BIG things for Maggie.  Then, on the first Monday of the month (which is today…a little late notice this month), if you can gather with others at that time to prayer for Maggie, I know there is power in us coming together and praying together.  While of course we want BIG prayers for Maggie, there is no need to limit it to just her.  Allow it to be Miracle Prayers on Monday.  For the locals, you can find Shawn, Maggie, and I in the student center on campus on the first Monday.  Come join us and lay hands on her in prayer.  Others, we would love to Skype in at times if you are joining with others in prayer.  I anticipate that as we realign our hearts and put all our stock into the One that is more than capable, we will continue to see bigger and bigger things happen in her life.  We will be able to look back and see the faithfulness and know that God honored that.*****

Maggie and I went to lots of doctor appointments, testing, etc. this past week.  With the neurologist we sat and talked about all the blood tests that have been run and all the things that are within the normal range, or close enough that it’s not a big concern.  At ophthalmology we talked about the structure all being normal.  With the hearing screen, structurally, everything looked beautiful.  YET… so much remains abnormal and unexplainable.
Maggie had been making great progress the first few months on the oil.  Lately, it seems like she has been a little stagnant in progress, that we are just holding our own.  Lots could be attributed to this…change in seasons, teething, moon patterns, pharma weans, cannabis oil building up in her system, not enough oil, the list goes on and on.  There are so many variables and so many things that we can try to adjust, different parts of the plant we can introduce, etc.  Often as parents, we look at kiddos with seizures and try to control this or that or the other.  No doubt that we have to vigilant in watching the variables and trying to provide the best environment for her, BUT does my perceived ‘control’ really have any weight when compared to what God can and will do in her life!?!?  It’s time to relinquish it all back to the One in complete control!!  It’s an ongoing struggle to keep Him in the right place and more so, keep me in the right place, not trying to take back ‘control’.  How many other areas do each of us need to do this in??

Hear me out in all of this.  This does not change our course of action.  It does not change us constantly trying to figure her out.  What it does do is realign our hearts and our allegiance.   It helps us place the power and authority in the right hands.  And thus, when we give Him Glory, we will see His GLORY!!

p.s.  I know it has been a long time since I have posted.  In summary, not a lot has changed lately.  Maggie's molars have been working on coming in.  She's opinionated when she is hungry and becomes very demanding...like her daddy.  Mommy is a board certified CNA and will begin getting paid soon.  We had some friends come visit and they took Mommy back to Iowa for a quick visit.  Mommy harassed some legislators to try to help open the door for critically ill Iowans.  Daddy is trucking along with school.  He had a scare with one of his mid-terms last week, but spent A LOT of time studying and having Mommy and Mags quiz him.  He thinks he did well on it!!

Mark your calendars...If you are in the area.  Maggie will finally be getting dedicated on May 11th.  We will also have a birthday party for her that day at the park.  (I know it's Mother's Day!  We can celebrate all the Momma's too)

2.11.2014

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!!

2.07.2014

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
Governor
        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)
House
        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 :)


1.09.2014

Great things in store...

It has been far to long since I have posted.  For the most part, Maggie has been holding her own as we slowly decrease her Zonisamide and gradually increase the CBD.  Thank goodness she has been stable, because there has been plenty of other things going on.

Leading up to Christmas, Daddy was very busy with the Christmas Eve-ish service at church while Mom was busy being an elf.  Maggie got shuffled around a little bit, but we are so grateful for all the friends that stepped up to help us out.
Thank goodness for technology
My grandma's health also began to decline more quickly.  Just a couple days before Christmas, she took a drastic turn for the worse.  This was devastating to me, as I realized just how stuck Maggie is in the state of Colorado.  I desperately wanted all three of us to be able to jump in the car and head back to spend the time with our family.  The reality was we had to resort to Skype to make it happen.  Surprisingly, Grandma seemed to rebound after a couple of days.  She has been taken off all her maintenance drugs and is only on morphine and anything for measures of comfort.  She was able to be taken back to her home, with a hospital bed in her living room, someone there round the clock, and hospice nurses coming in daily.

Big girl bed now!
Christmas day we spent moving from the temporary housing to our apartment.  We figured this way we would have a whole trailer load of "gifts" to open.  It worked out great and was so quiet around campus.  That afternoon, some of our sweet friends invited us over for Christmas dinner and playing cards.  We couldn't ask for better families to be taking us in during the holidays.

Since Christmas, we have been trying to get the apartment pulled together.  Man there has been a lot to unpack and find homes for.  Fortunately I feel like we are getting a bit closer.  Once we get it show ready, I will be sure to share the pictures.  A really cool thing we found out is that we are in the same exact apartment that some beloved friends from Iowa were in.  The Weavers were the first tenants in this exact same apartment and shared with me that they have many treasured memories here.  How cool to know that their home is now our home!!  The view from this apartment is awesome.  You can look right out to the mountains and a trail is just down a little path from our apartment.  Shawn is hoping it inspires him to get out there and work out a bit.  The sledding hill is also right outside Maggie's window.  Three siblings made a point to come welcome us to the neighborhood.  How sweet is that!  I think we are going to enjoy our new home and neighborhood.

Originally, we requested a 2 bedroom, but ended up with a 3 bedroom because that was what  was available.  Ironically (or God), another Realm family inquired about any Realm families that may have an extra bedroom.  So, we are "adopting" a 20 year old daughter.  Makayla currently only has a seizure about every 3-6 weeks, so she needs someone around all the time for the "just in case".  Her family is from Idaho and were all originally planning on moving down but are hoping this will help her develop a bit more independence.  So, now we have a 20 year old and a 20 month old (next week).  Hopefully this is a win-win.  She has a place, and we have a bit more help with all of Maggie's school, food prep, housework, etc.

Maggie couldn't be with us because of the laws
This weekend I was blessed to have the opportunity to make a QUICK trip back to Iowa.  Literally it was about 40 hours in total, but an absolutely wonderfully blessed and productive trip.  Thanks to a special individual, my trip home was paid for as a treat to my grandma.  And it was such a treat to both of us.  Grandma was extremely shocked when I walked in late Sunday evening.  I will forever treasure the sweet time Dad and I spent talking with Grandma from 1-3 am that morning.  Again Monday evening it was treasured time with Grandma and her sister.  I couldn't ask for a better "see ya later" visit with her.  My grandma has lived a very complete life and is more than ready to move on to eternity.  The thought that Grandma may very well get to see Maggie run and jump and play before us is crazy and of course brings tears to my eyes.  I have to admit that I am kind of jealous that Grandma gets to enter the gates of heaven soon and stand face to face with our Creator.  Praise God for the hope and perfection of eternity in heaven.
The go-getters at the Capitol

Since I was going back to Iowa, I figured I would make the most out of the trip and try to make some headway for legislative change regarding medical marijuana.  Monday evening, Dad and I met with the State Republican Senate leader, Bill Dix.  He was open to what we brought to the table and hearing our journey.  Regardless if he votes favorably or not, it was a pleasure meeting with him and I was delighted that it worked for us to meet up with him.  Then on Tuesday morning, prior to flying out of Des Moines, two other moms and I met with the Governor's policy adviser.  Again, I was just glad to have the opportunity to share our story.  After that, I also did an interview with WHO-TV.  They are actually working on a bigger segment regarding the medical use of marijuana.  It probably won't be aired until February, but it is a great opportunity for more exposure.  So, all in all, a GREAT trip.  I will be posting more about legislative stuff soon.  Hopefully there will be a lot more to talk about as bills get proposed this legislative session.

As for the Magsters, when I returned home, I noticed a few things.  Her spasms seemed a little less intense.  Woohoo!  Shawn had upped her CBD the day I left.  I have a feeling we are getting closer to her therapeutic dose.  She also seemed to have a few new sounds.  On top of that, now she is a stealth pooper.  She had a big messy surprise for Mommy after Daddy picked me up from the airport.  But, that is great improvement.  We used to know every time she pooed because it took so much strain and effort.  The fact that she can poo without us knowing means it is now a much easier process now!!  And yes..once again, we are very excited about poo!!

She also flashed some sweet smiles and even giggles the night I got home.  It has been since August since we have seen the sweet giggle coos!!  It wasn't particularly in response to anything, but wonderful to see!!

Other things...many have noticed that her nystagmus (jumping eyes) is not nearly as prominent.  More focus and attention in her eyes.  She is pulling herself off my shoulder much more.  This shows she is gaining more neck control and trunk control.  Though improving the strength is important, this is actually more of a neurological issue.  Her brain is sending the needed signals to her body for her to make this progress!!  Yippee!!

And, finally, we have given her the last dose of Zonisamide.  This was the first day since last fall that we have not given her that drug!  It is also the first time since last summer that she has only had 2 pharmaceuticals in her system!!!  Woot woot!  That's my girl...getting stronger and stronger and decreasing meds!!  #CWupdate

Deep in thought





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!


11.15.2013

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!

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!!