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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.

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!!

11.07.2013

The Grow and a go, go, go day!

Yes...that's a bunch of weed drying behind us.
Daddy made it to meet up with us.  It's great to all be together again!
Literally, he parked the truck and trailer and hopped into the suburban with us to head to Colorado Springs.   There were a few different things we were meeting up with other Realm families for, but the entire day seemed like we were late for this and then late for that.  As great of a day as I had expectations for, it kind of left me disappointed.  Maggie was struggling with day 5 of no poopies, which caused for a cranky little girl.  Finally, mid afternoon yesterday, she was able to take care of that situation, but after that many days it proves to be a whole painful ordeal.  Then she was starving which where we were at the grow was not the most conducive for that.  Needless to say, she was not camera friendly yesterday.  There were a couple of news stations following the group around, and the daytime show The Doctors.  I think we managed to avoid most of the cameras with being late to everything and the little fussy butt!  There were plenty of other families there sharing their stories though.
All in all though, it was great seeing the grow and hanging out with other Realm families.  As you can see from the pics, the process of becoming Maggie's medicine is definitely a process.  Not a marijuana connoisseur, it was rather impressive seeing all the various plants and seeing the process, not to mention the aromas.
The best part was talking with and hanging out with all the other families.  Though we only briefly met some of these families when we first came out and all correspond on facebook, it's like seeing old friends, embracing one another and so excited to be on this journey with each other.  Hearing the stories of the results families are already seeing that have recently started the oil is SO encouraging.  We will all have stories to tell, and these stories are going to be the ones that change the laws.
I'll share just a couple:
A boy that wouldn't engage or string more than a couple of words along, sits in the car and tells his mom, "looks like it's just you and me mom" and is now constantly pointing out the window, "oh...look at the trees.  See that mountain"  He has smiles and is able to engage and play with his brother now.  He has only been on the oil for maybe 2 weeks, and the best part...Yesterday he was 48 hours seizure free!!
A three year old little girl that has spoken much of anything for the last year and a half said "Mommy" the day after starting treatment!
Encouraging, eh?  AMAZING!!!  Disclaimer: As encouraging as this is, it could also get worse before it gets better.  We could also experience a honeymoon period and then get yucky before it builds up in her system.  Basically...I just try not to have any expectations of what's going to take place.  I am preparing myself for it to get worse first, but would love to be pleasantly surprised with results like these.
So, where are we in the process?!?  We had a little hang up with the red card not getting to us so our original order for oil was canceled, but then, once we were able to track down the red card,  I resubmitted the order and was able to be back within the original batch.  We were supposed to be able to pick up the oil yesterday afternoon, but the lab results (all the oil is tested before we get it) were not back yet.  So, crossing our fingers...we should be getting it today!!
We have a couple of news stations that want to follow us and document our journey, so they will be joining us for a portion of our day too today.

Last night, we rushed back to Denver and joined our new small group at church.  It is great to have a new church family already loving on us and supporting us.  God truly has been in the details of orchestrating this situation so we wouldn't be floundering.  The small group seemed to be a great fit and we can't wait to get involved!!

As for housing, we are in an extended stay currently.  We only have to survive the next month or so of being on top of one another without killing each other.  Good luck with that, right?!  We should have housing available to move on-campus December 15th.  It ends up that we will be having a little bigger apartment than we initially planned, which means we will definitely have room for visitors!!

10.30.2013

News clarifications and IA visits

As most are probably aware, our story has had some media exposure.  Maggie and I did a simple little interview at my Grandma's house last week.  Little did we know how broadly that would spread.  TOP STORY and nearly 4 minutes of air time on the Eastern Iowa news station.  I think they did a fabulous job with the piece.  Her it is: KWWL news segment
It made sense when I my cousin told me she saw Maggie on the news in Des Moines, but I was a little shocked when a friend in Orlando told me she had just seen Maggie on the TV there.  Since the initial airing and printing of Maggie on the front page of the Courier, there have been Maggie sightings in the following places: Minnesota, Wisconsin, Arkansas, Massachusetts, Florida, California, Colorado that I know of for sure.  How cool is that?!  As one friend pointed out...google "Maggie Selmeski".  She's swept the nation!
As the news has moved a little further down the line, I've noticed a few more things have become a little skewed as well.  Kinda like the game of telephone.  I want to take a minute to clarify, just to not be misleading in anything.
1) Maggie is not from Janesville.  She is actually not from Iowa.  Shawn and I have been in Tennessee the last couple of years.  That is where we are actually moving from.  Daddy is still there finishing some projects up and will be meeting us in Colorado next week.  Maggie and I are visiting all our family and friends, as all of Mommy's roots are in Iowa.  Until laws change we won't be able to come back, so we are getting all our loving in while we still can.
When Shawn and I moved to TN, one of the stipulations was that I could jump in the car to come back to Iowa whenever I wanted.  We have taken full advantage of that!  I realized that in Maggie's year and a half, she has been back to the Midwest to visit family at least 6 times.  That will come to a screeching halt next week.  Thus, my motivation to advocate not only in TN, but also IA!
2) I did the interview at my grandma's house, Maggie's great grandparents, not my mom's (she's in MO).  We are actually staying with my sister while visiting too.  Oh well!!
3) Most articles said she failed 4 meds, which she has actually been on 6 meds plus the IV boluses.  She was on 4 meds at the same time!
At least the important stuff was accurate.  Maggie needs this new treatment option and we want laws to change!!!

In other news, I was able to speak with Senator Grassley on the phone.  He is so good about listening to his constituents.  I was glad that he took the time to listen and even become more educated on the issue of medical marijuana, as he has been a big opponent of the legalization of it.  Maybe, if nothing else, our story planted a seed.  And, he is open to us keeping him updated on Maggie's progress!  Overall, I consider it positive that I had his ear for a bit.  Just wish he could have met Maggie.

We have had a great time in Iowa.  The treasured time spent with friends and family is awesome!  I also got to share our story with a group of about 50 women at a Bible study last week.  As I was telling Shawn, it is SO exciting to be able to be used as God's vessel and hear back about how our story is influencing others.  I feel so honored that God is using us and our story, or more so, HIS story.
We've loved staying with my sister and nieces and running all around with them.  We've seen my grandma's lots.  We were able to get to Iowa City and visit all our friends down there. It's funny because it's basically a tour of my past:  One day last week, we were on UNI campus, where Momma went to college, and had lunch with Aunt Nikki, went to Chuck E. Cheese's, where Momma worked in high school and college, hung out at Heritage Christian school where Momma taught Pre-K, and swung by the childcare center Momma piloted opening up.
This morning when Maggie and I were getting ready to leave, Ava, my niece asked where we were going.  When I told her we were going to meet up with friends, her response was, "why do you you keep doing that?"
Pictures will be posted sometime soon!!

10.07.2013

A big day for us!

I realized there are a handful of things for me to post about today.
The first thing is something I have been looking forward to a while now.  Today we get to celebrate one year of not being in the hospital.  Within the first 4 1/2 months of Maggie's life, she spent 26 days in a hospital.  Granted the first 3 were when she was born and would be considered "normal" (If we can say that about our journey :) )  One year ago we left the hospital with a still vomiting baby.  She had vomited for a week before I took her in, she vomited the entire week we were in the hospital, and one week after we left the hospital, she was still vomiting.  It was that stay when I realized that even everyone at the hospital can't always help us.  Another "special" mom shared that our kids have seizures and that's part of our life.  They have resolved to only go to the ER when they think their daughter is truly dying.  I decided to adopt this philosophy as well.  Granted, that doesn't mean this past year has been all rainbows and roses.  And, it clearly does not mean that we threw our hands up and did nothing.  If anything, I realized that I couldn't sit back and wait for doctors to provide me with the answer, that I had to become a student of my own daughter.  I needed to figure out what she needed and then fight for whatever that might be.  There is no doubt in my mind, that without the manual therapy, we would not have been able to avoid the hospital.  When days would be questionable, I would often tell Maggie..."just hang in there till tomorrow so we can go see Piotr"  and every time, we would be fine.  Piotr and the team would be able to "listen" to her body and help alleviate whatever may be acting up.  What a blessing staying out of the hospital has proven to be?!?!

Second thing...We got the ok from our neuro to begin a slow wean from one of her meds.  This will help minimize the amount of meds in her system when we begin the cannabis oil next month.  So tonight we began the process!  And, the harvest is underway, so the entire process is set into motion...we're doing this!  (Let me take a moment to clarify a little bit of this process....things will most likely get uglier before they will get better.  As much as we would like to hope that the cannabis oil will be a miracle magic bullet, we are fully prepared for the journey to become more difficult for a while.  The cannabis oil could magnify the side effects of the pharmaceuticals that she is currently on.  Over the coming months, we will begin weaning the pharmaceuticals, but with any wean comes the battle of detoxing.  At the same time as weaning, we will also be slowing increasing her dosing on cannabis oil.  I know many will be anxious to know how it's working, but I anticipate it will take 4-6 months for us to really hit our stride.  Not that Maggie hasn't already taught me patience!)

Today was also our interview with WCYB Channel 5.  Julie Newman, a evening anchor came out today and spent some time hearing our journey and learning about our story.  It was a pleasure spending time with her and the cameraman.  What we did learn was that Momma would be an awful Miss America competitor.  Julie would ask a question and I would go off on a 5 minute tangent and be so far from the original question!  The few things Daddy contributed were probably much more important than all the talking I did!  It should be airing some time this week.  We will be sure to post a link (unless Mommy comes across crazy!!)

Finally, there are a few events coming up:
Our friends at Greene Valley Developmental Facility (where Maggie and I go swimming daily) are having a fundraiser for Maggie.
For $5 you can get 2 hotdogs, chips, and a beverage!
When: Thursday, October 10th
Time: 10:30-1:00
Location: in front of the gym (located at the back of the campus)
Come on out and pick up lunch!
We have been extremely blessed by their generosity to allow us to use the pool and when they told me they were planning this for Maggie, we were beyond grateful!

There is a Bon "Voyage" Fire planned this coming Saturday.  We will also be sharing our testimony from this journey and coming together for a time of worship, with Daddy playing :).  Feel free to contact me for more information about this.

9.18.2013

An Iowa Hawkeye shirt

After therapy yesterday, while at Trader Joe's for our weekly grocery shopping, we were delighted to see an Iowa Hawkeyes shirt across the way.  As we ended up right behind the lady, I piped up with a "Go Hawkeyes!...Are you from Iowa?"  Little did I know that would prompt a 20 minute conversation.  We began sharing our Iowa connections with one another and were instantly kindred spirits.  While at school at the University of Iowa 18 years ago, she attended Grace Community Church.  She was also married there.  Heritage Christian School, where I taught Pre-K for 4 years, shared space with Grace.  Small world, eh?
Through conversation she asked about Maggie, who was snug in the Ergo carrier.  I ended up sharing a good portion of our journey with her.  Then, she asked if she could pray for us.  Of course I said yes!  So there standing in the beverage and snack aisle she prayed for us and our endeavors.  How blessed we were in that moment and grateful that she decided to wear her Iowa Hawkeye shirt on that day!!

9.12.2013

Advocacy

I finally got letters in the mail today.  Letters to Tennessee Legislators (local representatives, state senators, the governor, basically anyone I felt needed to hear our story and might have an impact on laws)  You may be asking..."why is Rachael putting time and effort in trying to contact legislators when they are moving anyways?" and "what's wrong with the laws?"
A quick run down.
Marijuana is a Schedule I drug.  As defined by the Drug Enforcement Administration, "Schedule I drugs, substances, or chemicals are defined as drugs with no currently accepted medical use and a high potential for abuse.  Schedule I drugs are the most dangerous drugs of all the drug schedules with potentially severe psychological or physical dependence."  Some Schedule I substances include heroin, LSD, ecstasy, and marijuana.
Research for Schedule I substances is more strict and thus limited.  The limited research, doesn't allow the "proof" needed to show medicinal value.  Chicken before the egg, or egg before the chicken?!?!  Clearly, we are seeing that there is medicinal value to this substance, not just for seizures (which is of utmost importance to us), but also cancer, glaucoma, AIDS, and much more.
As the law sits, marijuana is federally illegal.  However, compassionate states, like Colorado, allow for the use of marijuana.  Basically, they put their own parameters on the use of it and enforce accordingly.  But, that still does not change that it is still federally illegal.  Some of this is what has recently been in the news about federal government not stepping in on these states usage.
So, what's that mean for us??  Though we will be legal in Colorado, federally law does not recognize that.  The minute we cross state lines with the marijuana, it is considered drug trafficking, and the other states have the right to prosecute to the full extent of the law.  Remember, Schedule I substance?  and, not only that, but giving it to a child?  Though we have a fully justified reason and it will hopefully be extremely beneficial for Maggie medically, let me put it this way.  What if I was taking heroin across state lines and giving it to my almost 16 month old???  You wouldn't think I'd ever have the chance of seeing the light of day, would you?!  In the eyes of the law currently, the same is true with the marijuana.
In the state of Colorado, we should be fine with her MMJ card and all.  But, once we begin, she will not be able to leave the state.  This is something that breaks my heart.  No weddings, no funerals, no family reunions, NOTHING.  She will be in the state of Colorado until laws change.  Now, many have said..."as long as you don't get caught..."  That's all fine and dandy of a thought, but let's play out the scenario.  First of all, she would be taken away from us.  And secondly, who would continue her treatment if that is the reason they take her away from us!?  So, there we would be in jail, and Maggie wouldn't have anyone to know all her needs, let alone the withdrawals and seizures she would begin to have by not receiving her cannabis oil.  On top of all that, all the families served by the Realm of Caring would then be at risk of losing their supply and the entire operation could be in jeopardy.  Needless to say, NOT WORTH IT!!!
But, the issue of us not being able to return to Iowa or Tennessee with Maggie with us, is still disturbing.  Obviously, we are not afraid to pack up the car and just go wherever.  One of the stipulations when we moved to Tennessee was that I could jump in the car and go visit Iowa whenever I wanted, and that has been wonderful so far.  But, our visits as a family will all come to a screeching halt.  In a couple of months, it will either be Shawn going one place or me going one place, but Maggie will only get to see people that come out to Colorado to visit.  Not only that, there are other families that don't have the capabilities of packing up and moving across the country.
Thus, my efforts for legislative change!!  I don't have all the answers, or even really good lawmaking suggestions, but I do have a story to share.  I want the lawmakers to see Maggie's face and be accountable to her when they determine whether or not medical marijuana usage is criminal.

Below is the basic letter I have sent off (complete with some pictures).  I plan to send additional letters to Iowa legislators as well.  So far, I have also forwarded the letter to a couple of the local TN news stations, as I feel it is an issue of educating the public as well.

September 12, 2013

Dear TN Legislator-

I am writing to you to address a topic that is very near and dear to our hearts.  I realize that there are two sides to every issue, but I feel like our government is gravely overlooking a tremendous medicinal therapy for children like our daughter, medical marijuana.  There is no doubt that the war on drugs is an ever difficult battle, however, legalizing medical marijuana for MEDICINAL purposes could prove to be the miracle many families are looking for.

Our daughter, Magdalyn Joy was born May 2012.  She was perfect!  At 6 weeks, she began having full tonic-clonic seizures.  Since then, everything about our journey with our sweet little Maggie has proven to be a mystery.  Doctors have not been able to quite figure her out.  After tests upon tests, a handful of hospital stays, and multiple seizure medicines, there are still no concrete answers, except that her prognosis is questionable.  At 9 months, she developed a new manifestation of what are known as Infantile Spasms.  She has yet to find relief and control from these seemingly harmless, yet devastating generalized seizures.  On any given day, she has hundreds of them.

Last October, when we were told Magdalyn probably wouldn’t live very long, we were not willing to accept that, and we still are not.  Now, at 16 months old, with developmental delays across the board, Maggie is on the waiting list for Charlotte’s Web.  This specific strain of high CBD, low THC cannabis, has proven to be extremely effective in reducing seizures in children with intractable epilepsy, similar to Maggie.  The progress other children have seen provides hope that someday precious Maggie will be able to fully express her personality, or as we like to say, have the opportunity to emerge from her shell of a body.  We can’t wait for the opportunity to meet our daughter.

With no major adverse affects, I find it criminal to not allow parents the option of providing their children with relief from the constant seizures.  Our doctor at Vanderbilt agrees that cannabis oil is the next best step for Maggie.  I think it is worth noting that the current pharmaceuticals she is on have not been approved by the FDA for use with children and these medications clearly have a negative effect on her growing and developing body.  In my mind, the “unknown” (though many have used the worst part of the plant for years) side effects of marijuana, in no way can compete with the known, approved, and medically acceptable effects that come along with administering these drugs to an infant/toddler. 

We have taken her across the country for intensive therapies.  These have helped strengthen her body, but the paralyzing combination of the ineffective, yet detrimental, anti-seizure meds and the uncontrolled spasms create a fight within her own body.  Though we are extremely hopeful that the cannabis oil, along with these intensive therapies we are providing, will allow her to have the opportunity to have a more carefree childhood, ultimately, our hope is in God, and we know He is the one guiding each step along our path.  He has provided for us thus far, and there is no doubt He will continue to hold us in the palm of His hands.

With that being said, you have the opportunity to make legislative changes, to allow children in crisis the opportunity to have a better quality of life.  If there is anything I have learned over the course of this year, it is to trust my mommy instinct in regard to Maggie’s care.  We are parents that will go to all ends to fight for what we know is best for our little girl.  Medical Marijuana is the next best step for us at this point.

We are paving the way in educating as many as we can on the benefits of Medical Marijuana.  We have a tremendous support system that has rallied around us and continues to follow our entire journey.  Up until a year and a half ago, my opinion would have been drastically different.  It is my hope and prayer that as you put a name and a face (an adorable little face at that) to this issue, you will also see the opportunity you have to impact this little life and so many others.

I will be in contact with you and/or your staff to set up a time to meet with you and discuss this issue further.  In the meantime, we would love for you to read more about our journey at www.theselmeskis.blogspot.com and our “Miracle 4 Maggie“ Facebook page.  Thank you for taking the time to understand this issue from the perspective of a determined parent, wanting the best for her child.

Sincerely,

Rachael Selmeski (aka Maggie’s Mommy)


Please join me in praying for receptive hearts and the opportunity for Maggie and I to meet with these individuals.  Also, for my boldness when I do get to meet with them.  Until then, I better get off the computer and get back to packing...

9.05.2013

Missions Accomplished!!


Overall everything went wonderfully.  (Minus my few unnecessary freak outs at Shawn). 
On Monday we ventured around Summit County with our cousins.  Eric and Beth were wonderful hosts.  We had a great time just hanging with them.  Shawn and Eric could have talked Jeeps and off-roading rigs all day!  What a beautiful area!  Definitely ski country, but lots of bike trails around as well.

Tuesday morning bright and early we went to got Momma's CO Driver's License and Maggie's ID.  Glad we got there right at 8, because it was a busy place, and we were even out in Frisco, not the city.  They only give temp IDs until the photo cards come in.  It'll be interesting to see Maggie's picture.  The lady was trying to get her to look at the camera, and I was like "good luck".  Finally Shawn had to tell the lady that Maggie can't really see. I think she opened her eyes just before the camera flashed, so we'll see.  Sure it will be cute regardless!

From there we went straight to Denver Seminary for a tour.  Walking onto campus felt so natural and comfortable.  We were fortunate enough to catch their first chapel of the semester.  While we were singing praises to God, I had to hold back the tears.  Tears of joy and excitement for this new endeavor for our family.  I'm so proud of Shawn for this big step he is taking.  I anxiously look forward to how God will be using us and the way He has been preparing the way for us.
Shawn will be pursuing a Master of Arts of Leadership, with a concentration in Worship.  He is considering a few other concentrations as well, but Worship is a definite.  The program should take about 2 1/2 years.  This option is less intensive than an M.Div, leaving out the languages, and allowing for a shorter program.  Since Shawn doesn't forsee himself being a senior pastor, the Professional MA is just the right fit!  Last week, we were talking about it and we both agreed that we don't know exactly what God is calling him into, but we could really see It being some sort of outside the box type of ministry.  Though we don't know what that is, we are confident He will reveal it to us as needed.  Until then, we just need to be obedient in following where He is leading.  Everything just felt so comfortable and at home.  To be honest, I'm quite jealous.  I would love to be able to get my Master's there as well, but that might be a bit too much to bite off at the time.  We'll see how the first semester goes for Shawn.

The housing was quite nice and based on the other places we looked at, it is decently priced.  We will have to sacrifice quite a bit though.  The dogs won't be able to come with us, so they will have to go to Grandma Camp to live.  We know they will love being with my mom, but we will miss having our babies around, no matter how ornery they are.  We keep downsizing from our Swisher house when we first got married.  We don't plan on bringing much with us initially.  Shawn's extra time will be devoted to studying, and Maggie and her therapy will be keeping me occupied.  There will be some benefits to living on campus.  We can save $ on fuel and Shawn can come home for lunch.  Plus, this way he'll be more likely to meet up with others for study groups.  The campus also has a great family atmosphere.  Maggie already met another little tyke.
For the stressful part, it is not guaranteed at this point and we most likely won't be able to move directly in when we get out there this fall.  The housing situation has been the most stressful component, by far.  (Thus, my freak outs) I would have liked to have a 2nd and 3rd option lined up before we left, but we are really hoping this will work fine. We may just be living out of an extended stay hotel for a while when we first get out there.

Tuesday night we also got to go see a sweet new baby!  One of my good friends happened to have her baby while we were out there.  While we both were still in Iowa, Jenn taught 1st grade and I taught pre-k at the same school.  We love the VanOtterloos and are excited to have the opportunity to hang out with them again!

Yesterday was appointment day.  We spent some time in the morning getting her medical records a little more organized.  We also drove around some more to navigate the area.  We had to go to 2 different doctors.  Minors have to have two doctors sign off to get the MMJ card.  I'm not going to lie, when we walked into the first appointment, I did wonder what we had gotten ourselves into.  It felt a little sketchy, but the doctors both were very nice.  And, having a letter from our current neurologist helped to expedite the procress.  Dr. Gedde, our second doctor, was wonderful and will be following us along this process. The notaries on staff helped go over all the paperwork and make sure everything was filled out precisely right.  In one spot, I had messed up writing a Y just a little bit.  You could tell it was a Y, but the notary pointed it out, and we all decided that taking the time to refill out that sheet would be better than getting her application rejected.  This is serious stuff!
By the time our second appointment was over, the postoffices were already closed, but the application had to be sent certified mail from Colorado.  So, we drove east a couple of hours, got a hotel, and tracked down a post office early this morning.  Sending it off was a little nerve racking, but also prompted a deep sigh of relief!

Legally, for 35 days with the application and receipt, we could purchase medical marijuana from any dispensary, while we wait for the card. However, the Realm oil is all organically grown and tested multiple times throughout the process.  It's worth the wait for it to be coming from a trusted source.  The process from here...the Realm is planning to be able to take 50 kids off the waiting list with the October harvest.  The marijuana will have to cure for a couple of weeks, and then after control testing, they will prepare the oil in small batches, gradually working their way down the waiting list.  Maggie was around #39 at one point.  Now that we have submitted everything, we are waiting to hear where we sits.  We should be able to get Maggie started some time in November.  The Stanley brothers will be growing her specific plants (she is alloted 24) and they should be ready at the March harvest.  This is all connected with the Realm of Caring.  The Stanley brothers and the Realm of Caring are the ones in various videos we have posted. (Side note...though we didn't get to meet any of the brothers, we did get to meet their mom last weekend.  She is super sweet and I look forward to getting to know her better).
As for now, we have stopped at my mom's on our way back to TN.  There is lots to get done in the next couple of months.

9.01.2013

Awesome church potential tonight

By chance (or God), we ended up checking out a church that was not even on our list of ones hiring, but it had a Sunday evening service and we liked what we saw on the website, so we thought "why not check it out.".  We walked in and instantly felt at home!
There was a long table for people to sign up for growth groups.  After the service, as I was glancing over the table, a sweet couple connected with me and stressed the value of growth groups for them.  I stressed the importance of our life group and how that is one of the most difficult things for us to leave in TN!
Worship was electric! People were engaged and alive. There was even a keytar.
The message was very real, Biblically grounded, and spoke directly to our hearts.
We ended up talking with some of the staff for quite a while afterwards.  Maggie won the Pastor's heart, as he has background in special ed and has a soft spot in that arena.
AND...they are in the preparation phase for launching another site and have been praying for God to provide the staff individuals for that site.
Needless to say, we'll be in touch with them.  Pretty impressive, eh?!?

8.31.2013

We're jumping off the deep end!

Now, where do I begin?!
Lots of BIG changes in store for the Selmeskis.  A couple of months ago, Shawn shared with our small group that he feels like we are a sailboat out in the middle of the sea.  He described it as having our sail up but no rudder to determine the course, just have to rely on God to blow us in the direction He wants.  The following week, our church had used a quote for something else.  I think it resonated so loudly with our personal situation.  "Ships are safe in the harbor, but ships are not made for the harbor."  So true for all of us!
Right now our ship is headed to Colorado. Literally right now, as I type we are just arriving but also permanently (if that means anything when following God) in a couple of months.  This week we are getting all our ducks in a row.
So, what are those ducks?!?!
There is no way I'll be able to include all the little things that confirm this move, but I'll do my best.
As some of you have tuned in, we had been exploring the option of medical marijuana for Maggie for the past few months now.  It was back at the beginning of May that we both were really intrigued and started considering MMJ as an extremely viable option for our sweet little girl.  This is the original video we saw:
http://www.washingtonpost.com/posttv/video/thefold/medical-marijuana-renews-hope-for-children-suffering-from-seizures/2013/04/24/4eb5419e-acdb-11e2-a8b9-2a63d75b5459_video.html

You can also search 'Realm of Caring' on YouTube.  With the recent airing of the WEED documentary on CNN, it prompted us to begin seriously considering this.  We were planning on giving the FHC program a few months so we could evaluate that by itself, until I tuned into a conference call a week and a half ago.  On that call, I learned more about the grow cycles.  Harvest takes place 2 times a year, in October and March.  As it sat at that time, there were 97 kiddos on the wait list (one being Maggie).  The Realm anticipates they will be able to take about 50 kids off the wait list with the October harvest.  As long as we establish residency by October, then Maggie's specific plant count will get planted so her specific plants will be ready at the March harvest.  If we waited, her plant count wouldn't get in until March and then not be ready until next October's harvest.  We weren't wanting to wait that long.
Something I have come to realize from hearing the other successes and chatting with other parents.  I have become complacent with all the spasms.  We just let them run their course and don't get too concerned about them.  Heck, it just looks like a startle reflex and doesn't seem to phase any of us much.  However, they are generalized seizures every time, wasting lots of energy, and damaging her developing brain.  One day this week we started counting with a clicker to see how many seizures she actually has in a day.  We were blown away...over 500 in one day.  If you would have asked us, we both agreed we probably would have told you somewhere around 50. Guess our estimation skills are not that great.  I would say about half of hers were the infantile spasms and the other half were what I believe to be myoclonic jerks.  The success that these other families (also with children with very difficult to manage seizures) are seeing provides a new hope that we could get them to stop (or at least decrease the frequency).  Not to mention, that by using the cannabis oil instead of pharmaceuticals, the detrimental side effects could nearly disappear.
We are aiming for a trifecta.  Colorado has some wonderful IMT therapists so we will be able to continue the body work to restore soft tissue motility. (Though it's going to be extremely difficult to say goodbye to Piotr and the staff in Knoxville.  They have been a tremendously intregal part of Maggie's stability.  We LOVE all of them!). But it's great to know we will have options of new therapists to work with Maggie.
We also plan on continuing with her program.  Though it may be crazy the next couple of months, we know that it is also a key piece in getting her brain organized and promoting developmental progress.
And finally, the MMJ provides hope that the seizures will become more controlled, without destroying her body!

But that's not all...Shawn is applying to Denver Seminary and will be starting classes in January for Worship.  Wow!  It may seem way out of the blue to many, but God's been laying the groundwork for a while. Two years ago while at the Christmas Eve services at Prairie Lakes, the Spirit overtook Shawn and revived his passion to be in ministry and deepen his theological knowledge.  At that time we talked some about seminary.  My personal preference was Denver Seminary, based on the handful of quality pastors we know that God is using effectively in His service now.  I was pregnant with Maggie at the time.  We never really acted on the prompting, and then Maggie was born, and then, well..ya know, life got a little crazy.
Over the past couple of years, Shawn has initiated and pursued various worship leader positions.  However, for one reason or another, they have not panned out.  I know, as well as most everyone that attended Heartland knows that Shawn's skills and talents allow God to use him in great ways.  He has been more than qualified for many of the positions.  Most recently this summer, Shawn had a few fairly promising leads on positions.  There was one in particular in which they sought him out to apply for the position.  After waiting for nearly a month after the interview, Shawn recieved a call the Monday after the airing of the CNN documentary.  They decided to go another route.  This was dissappointing and heartbreaking, BUT there is no doubt that this no was a "I have something different in store for you.". Like Shawn has said, we've had our sail up and have been waiting to see where the Lord takes us.  I hope you didn't miss that after a month of waiting, we recieved a shut door, the DAY AFTER our continued exploration of cannabis had been sparked.  Before Shawn even got home that night, he had contacted Denver Seminary to get more information.  It was confirmed just like that in both our minds.  Logistically we've talked through lots of details, but there really wasn't much conversation about whether or not we should go.  God provided a confidence in both of our hearts to know this is the next step for our family.  Knowing the background and watching the documentary the night before, my dad, without any reservation, summed it up pretty well..."looks like Denver Seminary and living on love and weed!"
Logistically, there are a couple of neat things to share with how God is making this possible.  In the state of Colorado, Maggie will qualify for nursing hours which could be provided by a home healthcare company.  The cool thing is that the said home healthcare company can hire me, the parent, to go through CNA training and then pay me to provide the services, basically everything I already do.  I wil be an employee, have to attend meetings, log care, etc., but I'll be bringing in an income to help support us.
Also, we have found 4-5 churches looking for a part-time worship leader.  We will be meeting up with a couple of the pastors this week.

In other news, we had to drop a urine sample off at Vandy on the way yesterday.  They also drew blood from Shawn and I, as genetics wants to look further into a possible gene expression on Maggie that is of undetermined significance.  Hmm..  Don't know anything about that really, except Mommy and Daddy had to get poked and Maggie got out free!
Also, we were thrilled to find out that our neurologist is in support of the MMJ as a next step for Maggie.  It's wonderful when her team is on the same page as us!

So, this is going to be a busy week.  Lots of appointments and scoping everything out.  We could take all the prayers we can get to have everything line up.  The housing is of particular concern to get figured out this trip.

Luckily we got here in time to meet up with other Realm families.  What a blessing to already have such a tremendous network of truly 'special' families!

Crazy?!? Yeah, we know!

8.11.2013

Medical Marijuana for Maggie?!? tune into CNN at 8pm or 11pm (EST) tonight!

Last summer, just about this time, I came across information stating that Cannabis could be beneficial for treating seizures.  When I brought it up to Shawn, he's response was "no way...we are not giving our daughter weed."  This just goes to show my naivety, as I didn't even know cannabis was marijuana.
If you ask us now, I am very well versed in weed lingo and we both view it as a viable option for Maggie.  We are giving our current program 6 months of full effort to see what improvements we see along the lines of better seizure control.  Then, pursuing cannabis may very likely be our next step.  However, there are some major hurdles to overcome to obtain access.  I have been researching and staying in the loop regarding pediatric use of cannabis for a few months now.  As we continue to subject Maggie to a cocktail of pharmaceuticals, still without providing complete seizure control, this is not something we take lightly.  We are in search of the best option to allow Maggie to develop to her full potential, while best honoring her body.  Please know that this is my general interpretation of the information I have come across.  I think it's worth piggybacking the recent press attention. I encourage everyone to do their own research and become knowledgeable on this topic.
In the past couple of years there has been some amazing pioneers in the seizure world that have come to see tremendous results with the use of cannabis for children that have not responded to traditional anti-convulsants.  Now, to clear the air, it is not smoked.  We would not be smoking to get Maggie "high".  It is made into an oil that can be given with food, not uncommon to any of the meds or supplements we are already giving her.  Also, in this case, it is specifically grown with extremely low THC (the psychoactive part that gets people "high")  and high levels of CBD.  Granted, long term side effects have not been thoroughly studied. The children that have not responded to seizure meds that have started MMJ (medical marijuana) have taken off and soared developmentally.   I have yet to hear a family mention negative side effects from the high ratio CBD.  Given the lengthy list of side effects for Maggie's meds and the recreational use of marijuana for years, we'd be willing to take our chances of the unknown.  (Willie Nelson's been using it for over 50 years and we would be ecstatic if Maggie even made it to his age, let alone be functioning as well as he does.)  While, yes, I do believe Maggie's seizures contribute to her delays, without a doubt, I am confident the meds play a much greater role in her lagging development.  Marijuana is a natural, God created substance, not synthetic, which of course is more appealing to me.  Don't get me wrong here, that doesn't mean I support the misuse and abuse of anyone's  body for recreational use.  It is worth pointing out that the past 4 presidents, including Barack Obama have admitted to using marijuana.  For those naysayers out there, here's the kicker, there has not been a single reported death by overdose (let alone use) of marijuana. Not even tylenol can claim that.  Interesting, eh?
Now for the tricky part, and why I feel the general public needs to be more educated on this.  Obviously, I have vested interested into delving into this, but the general public doesn't.  However there are huge legal barriers that make it difficult for those that could benefit from MMJ from obtaining it.  Marijuana is considered a Schedule 1 drug, which means it is most addicting and dangerous.  Why it has that classification, I'm still unsure.  However, federally, it is illegal.  And to make matters worse, because of this classification, the research necessary cannot be done.  So, the research to prove it is safe and effective can't be done because it is a Schedule 1 substance.  Hmm... So, how do people currently access it?  Certain states have become compassionate states and approved the use of MMJ.  Most of these states requires 2 doctors to sign off on it and some still don't allow use for minors.  Since the states are the ones to enforce the laws, it's kind of like determining they will somewhat turn a blind eye as long as the individuals have their MMJ card and are not in possession of more that what the state deems as legal.  Even still, the federal government can seek out dispensaries to shut them down, which limits access.  Wow!  So, in a legal state, growing your own can often be a valid option.  (Given my failed garden this year, I think we would need to hire a grower). In Colorado particularly, there is a group of brothers that grow as a charity to provide this specific low THC, high CBD strain known as Charlotte's Web.  Due to all the recent PR, the waiting lists for places like this are growing.  Not committed to it yet, we did request to be put on the waiting list.  If we decide down the road, that this is our next step, we wouldn't want to have to wait for years for it to be available.
Because there is so much legalities involved and we are in a democratic society, I strongly urge you to watch Dr. Sanjay Gupta's program on CNN tonight to begin educating yourselves on the topic.  I have been fascinated by the misconceptions I have had.  The program is on at 8pm and 11pm EST.  From there, Maggie may be requesting your petitioning to state officials.  Unfornately neither Tennessee or Iowa allow for the use of MMJ at this time.

8.05.2013

First Day of School

We started our program today.  The first day went quite well.  It was just like the first day of school as a teacher...make it to the first special (in our case it was morning nap), then tweak and refine the processes to work out the snags.  She was ready for morning nap and Momma stayed busy refining a few things.
She did great today.  The biggest thing with the program is that Mommy has to slow down enough to pick up on Maggie's subtleties that show she really is engaged and processing.  She proved to me today that she is processing information and capable of engaging with the activities.  Her breathing definitely changed with the visual stuff, and she would fatigue from that.  The smells woke her up, and I have to be very careful she doesn't check out and shut down with the auditory stimulation.  Overall, I think she was more alert throughout the day too.  I think up until now she often checks out because nothing is meeting her at her level to stimulate the brain.  Today we were at her level and she was able to attend to it.
As for Momma, I felt way more productive than I have in a while.  I keep telling Shawn, "an object in motion remains in motion, an object at rest stays at rest"  Having a full-time "job" will be good for me to get other things done around the house too.  I know seems a little weird, but then again, we all know that I am a little out of the ordinary!
It'll be interesting trying to work out the best schedule.  She'll probably be more hungry throughout our program days.  We had lunch a little earlier than we have been and she fell back asleep halfway through it.  Oh well!  She must have needed it!  We probably squeezed in about 1/2-2/3 of our program.  It'll be amazing if there ever is a day that we accomplish the entire program.  That's my goal though!
Momma is proud of our accomplishments for the first day!


It's gotta be a God thing!

Ok...I know many don't like to talk about money, but I think it would be negligent to not tell you this amazing God story.  I'll have to provide a little bit of background to emphasize just how amazing God is.  He proves Himself and how he provides for us over and over again. (Particularly in the finances).
As poor as Mom and Dad are, Maggie has LOTS of friends and family that are supporting her.  It is amazing to me all the little and big donations that come in for Maggie's care.  Leading up to the summer, a couple of big fundraisers (at the campground and the bike ride), as well as other random donations set us up well for the adventures of therapy this summer.  Unfortunately in between the acquiring and spending, I had finally finished the grueling SSI application and submitted it.  Because Maggie's nest egg was sitting there, we were told we aren't poor enough to be eligible for SSI.  So, because we have generous friends and family, how does that compare with the fact that my daughter has a severe disability, that can be costly all around?!? (I'm pretty sure there are plenty of people on disability-because they are left handed, or something stupid like that-milking the system...we could actually use the money for providing her with the best possible care.)   Needless to say, I was quite disenchanted with the entire system.  We are poor enough to be stressed, but not poor enough.
At any rate...didn't mean to get off on that tangent.  I have a different point to my story.  Since all our big spending in PA and CT, and some more donations, I haven't had the chance to update and know where Maggie's finances sit.  But, we are in need of a hyperbaric chamber. Last week I tried to get started with some of the components of her program, but have really felt this oxygen to her brain piece is a major priority.  Vision requires a lot of oxygen and it seems she fatigues quickly.  Trying to implement the program without getting her brain to breath is like hitting our head against the wall.  I was a little discouraged when I found out the ideal chamber that I would be comfortable with us using was much more than I had anticipated.  I thought we were in the range of $7,000-8,000 but to actually meet our needs (one of us going in with her and a reputable manufacturer, etc.) we are looking at the $17,000 model.  Wow wee!!  Not what I expected.  Again, slightly discouraged that we won't be able to meet Maggie's needs for a while.
A point of clarification here. As much as we want to provide everything possible and try anything we can for Maggie, we are committed to be good stewards and following the Dave Ramsey principles we have acquired along the way.  Finances are a big enough issue, particularly for special needs families, that us going majorly into debt to try everything under the sun, would not be the least bit healthy for our family.  We have seen God provide perfectly and we are confident his provisions will continue.  As the funding comes in, we are able to explore the various avenues of treatment, that have proven beneficial up till this point.
Knowing I want to start the program and get moving with it, we considered checking into the medical financing program they have available.  But, then we would be strapped down by the debt.  Hmm??... Decisions, decisions!  We've thought about going ahead and getting it in hopes we could raise the funds this fall, or waiting to get it until after having a couple of big events this fall.  The struggle we have is that we don't want her to be falling any further behind.
I spoke back and forth with the lady at Newtowne Hyperbarics multiple times this week.  She was wonderful and even gave me some pointers if we ended up finding one second hand.  So, I had posted on the Family Hope Center Facebook page about being in the market for a chamber..any family looking to get rid of one?
Now, this is where is gets good.  Kay, a mother of a child with Infantile Spasms that I originally spoke with about FHC said she would check with a friend that may be interested in selling theirs.  Kay told me she doesn't get on FB that often, so the chance she saw my post was impressive.  But, it get's better.  She contacted her friends in Colorado.  They had listed the chamber a few months ago but it hadn't sold.  And just the night before Kirk had a feeling he needed to relist it on Craigslist.   So, Kay provided me with the link to their listing.  When I checked it out, it was the brand we were looking for.  I called up to the gal I had been speaking with at Newtowne Hyperbarics and she verified the version and serial number and reassured me that it should be able to meet our needs.  She even was willing to send a manual our way for it.  The family only used it about 50 hours and had it listed for $10,500 plus shipping, which was $400 for them.  So...remember that number....$10,900.  When I saw the price I thought "wow...that could save us quite a bit. But...that would mean we have to have cash in hand.  Hmm."  I set out to figure out just how much money Maggie had.  We've kept a fair amount of cash available.  Plus, I had checks that still needed to be deposited.  I checked the account online and tallied everything up.  Crazy, but we had $49 in ones.  I rounded that up to $50, but later came across 4 quarters in one of the envelopes.  So, when it was all tallied up...drumroll please.....exactly $10,900!  When I added it up and arrived at that number, I knew God was saying loud and clear, "have no worries.  I have your family in the palm of my hand, and your little girl will get what she needs!"  Absolutely AMAZING!!!

So, we are working out the details of getting the chamber and should be able to implement that aspect of the program in the very near future.  Also, now we will be poor enough to re-apply for SSI.


Can you find the error?!?!
AMENDMENT:  Over the weekend I had typed this entire blogpost up.  I thought it would be fun to include the picture that showed my excitement, but I figured I better check my math before I posted it online for others to critique.  And, low and behold, I had messed up!  Yep...didn't need to carry a 1 in the thousands column.  Therefore, in reality, Maggie only has $9,900.  Man, what a bummer, and what a farce.  I had just read Shawn the blogpost (and even cried reading it to him)  and then showed him the note paper.  Shawn and I couldn't stop laughing at the stupidity of it.  I debated deleting this entire post, but I think it is still a tremendous opportunity to show how God is caring for us.  Some may say that my miscalculations completely null and void anything I had said about God's provisions and faithfulness, but I think it shows His divinity even more.  I wouldn't say I am infallible in math computations, but usually I'm fairly decent in the math department.  For me to make this foolish error and the sum to have arrived at the $10,900, there is no doubt in my mind God knew I needed to hear His truths.  That if I arrived at the $9,900, His truth would not have been such a glaring, "I'm taking care of you!"  At $10,900, it was "I'M TAKING CARE OF YOU", yelled loud and clear in my face.  At $9,900, we talked and will easily be able to move our funds around and still make it happen, without too much of a hitch.  We already know we have some additional funds coming our way soon too.  This just makes for a few extra chuckles in the process!  Go ahead and laugh at me....we did!