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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.


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:

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!


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.


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!