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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.

7.11.2014

More news

I suppose I am long overdue for an update.  I used to be so good at posting, but haven't been nearly as good since we've been in Colorado.  And this is where the exciting stuff takes place!!

Maggie Developments
Over the past couple of months, she has really seemed to take off with her cognitive awareness and physical movement.  When we put her down on her tummy, she wants to move.  Her arms are not yet up to speed with the rest of her body, but she gets her legs going and wants to crawl so badly.  She can rotate a complete 360 on her tummy, and not just one direction, she can go both ways.  Those legs get going and she ends up spinning herself around in a circle after some time.  She also has rolled over for me a couple of times.  Usually with slight assist.
video
Our therapists out her have been great.  One nice perk is that PT, OT, and Speech all come out to our home.  We still travel to the Springs (about an hour) weekly for the Integrative Manual Therapy and have been trying to get up to the Anchor School of the Blind (about 45 min) at least ever other week.  Maggie has been using some push activated toys.  We are working on getting her to push to activate so eventually she can activate a communication device/assisted technology.  The other day one of the therapists used the words fascinating to describe Maggie, which is a good description.  It is evident that she is trying to do stuff and process, it's just finding the best way for her to achieve what she wants.
video
A couple of weeks back we were on a little road trip.  In the back seat, she was kicking her little piano and just singing/talking away with giggles included.  Then this past weekend we took her swinging a couple of times.  Shawn posted the video, but the audio didn't record.  She was having a ball.  She would straighten her legs and just hoot and holler squeals of delight.  We were talking and this is the first time that we have a very direct correlation...we start swinging her....she displays pure delight.  I have never laughed with her so much as the one day in the swing.  She was SOO happy and funny!!  By the way, we are seeing smiles nearly every day now.  Not in direct response to anything we can tell, but she is at least happy in her body.

Medications
We are almost done with our 2nd wean.  Back in February when we started this wean, I was so discouraged that we were never going to be done with this medicine.  Now....we only have 1 1/2 weeks and we will be done with Sabril.  This is the $20,000 one that could cause peripheral vision loss.  It is specific for the Infantile Spasms, but we haven't noticed anything major during the wean.  As our neuro said, "If it's not doing what it's supposed to be doing, then there is no point in having it in her system".  Amen to that.
So....she was on three pharmas when we started the cannabis oil.  We weaned her off Zonisamide over the first 10 weeks, gave her body a month or two to adjust and then started this wean.  Once we are done with this one, we will have one more left...Keppra.  We'll give her the rest of July and all of August to let her body assimilate and finish detoxing the Sabril.  Then we'll start in on the Keppra wean.  She has been on Keppra since she was 7 weeks old and it can be associated with extreme mood issues.  The one good thing is that she has been on the same dose for the last 2 years, so it is likely she has outgrown that dose.  It could be a difficult wean or it could be an easy one....we'll just see and take it slow, staying on top of detoxing as much as we can.
As far as seizures and spasms, we are still seeing quite a few, but we are trying to be patient and wait until we are done weaning to really see what the cannabis is capable of.  Plus, then we can play around with the dosing a bit more to try to find her sweet spot.

Bun in the Oven
Yes....we are expecting.  Due date is November 25th....just in time for Thanksgiving.  Yesterday was the 20 week mark.  We had the big ultrasound yesterday and everything is looking good and seems to be going well.  It is a very active little bugger, much much more so than Maggie for sure.  No...we didn't find out the sex.  Shawn kept looking when the tech said to look away, but he didn't have a clue what he was looking at and I wouldn't trust him if he did think he knew!!  Yep....we are those people that wait.  I remember the suspense of Maggie's birth kept lots of people up till wee hours of the night to find out she was a girl.  At our 10 week appointment when we first heard the heartbeat, Maggie started chuckling.  It was so precious!
We were not particularly trying, but we also weren't really preventing.  Clearly, God thought we were ready for another.  Which I am grateful for, because I don't know that we would have ever been "ready".  I know many of you are curious about the likelihood of this baby having issues.  Doctors do suspect that Maggie's condition is genetic, though no one has provided us with the answers of how or why yet.  IF it is genetic, then there is up to a 25% chance that siblings would display it as well.  As someone told me, that's a 75% chance of not having any problems.  And, that is all IF her situations is purely genetic.  Shawn summarized it well when he made the announcement to friends and family.  Maggie's situation has more than taught us how to trust God and we will continue to trust Him with this little one too.

Depression
I have committed to being honest and transparent throughout my blog and try to in life in general.  This spring was rather difficult for me on the mental/emotional front.  I think there were a ton of contributing factors.  First of all, there was the chemical situation going on inside my body as it adapted to growing a new little being.  Also, the fatigue of not being able to do much.  Put that on top of knowing there is more I could be doing to help Maggie learn more, but not having the umph to do it.  Add in the failed legislative measure in Iowa that doesn't allow Maggie to go back to see family and just hanging out in the apartment most of the time.  There is no doubt that the biggest component was that the pregnancy brought up Maggie's abnormalities a little more and forced me to walk through some of the emotions that I never did.  Depression is very typical within special needs mommas and very prominent at the onset of the illness.  I really think God protected me from having to deal with it majorly the past 2 years because Maggie really needed me to be all hands on deck.  There was no time for mom to be checked out and having a pity party.  With things much more stable, I was able to acknowledge our non-typical child and work through more of the emotions to try to accept this.  There is no doubt I will continue to go in cycles off being more depressed at times, as I already have noticed it particularly when Maggie is not making as good of progress as we would like.  I am confident that identifying and naming it with the big D word is the first and biggest hurdle in fighting it.  Fortunately, when I was not yelling at my husband, he was good about trying to get me out for a walk or run.  And, I had already committed to teaching for VBS and leading a Bible Study over the summer.  These intentional acts helped provide some of the purpose that I needed, but I still need to be confident in my identity being solely in Christ alone, not all the other areas that I try to find my identity in.

Moving soon
Not sure where or when, but definitely soon.  Maggie is the first kid to get her parents kicked off campus.  It's crazy, but we completely understand.  A few weeks back we got called into a meeting with the president of the seminary and one of the legal guys.  The meeting went really well.  They both showed genuine concern for Maggie and the entire situation.  They were supportive of us as a family and the decisions we have to make to take care of Mags.  If they would have come in with a bad attitude or we would have, the meeting could have been drastically different, but I felt it was handled very well.  You could tell they had lost a lot of sleep over the issue trying to figure out how best to handle it.  Due to an annual audit, the president has to sign off on being in compliance with all federal laws (including being a drug free campus).  If he were to disclose Maggie's medicine then all federal student loans could be in jeopardy to the tune of $6M.  We had already began the process of looking for a house to buy, but this just upped the ante a little bit.  The market here is crazy...houses are listed and gone within a day and there was a bit of a sticker shock for us coming from Iowa and East TN.  Most likely we will be able to get a fixer upper for Shawn to invest some sweat equity into.  Hopefully we just don't bite off more than we can chew. :)  Ideally, we are hoping to be able to find something and get off campus by September.

I think this was enough to update for now.  I'm sure I missed some stuff, but I can always add more...

5.06.2014

B-day gift ideas


We in no way expect gifts for Maggie's birthday.  With that being said, I know many people have asked and will still want to get her something, but she is so difficult to buy for.

I've been trying to brainstorm some good ideas that could be useful.
We've finally moved up in diapers and are needing to be stocked up on a few things.  I will try to provide as many details as possible for you to plug into Amazon.  Any print is fine (and it's kind of fun to see all the fun prints)
One Size Elite FuzziBunz cloth diaper
Diaper covers.....(velcro or snap) 
       Bummis Diaper Cover Medium (15-30 lbs) (super brite or super whisper wrap)
       Thirsties Diaper Cover Size 2
OsoCozy Unbleached Prefolds, size 2

Some sort of camelback hydration pack (i think Costco has them too), with a bite valve (i'd like to try something like this for her this summer to see if I can get her to use it)
Sensory Exploration toys...particularly if they are really sensitive to touch/easily activated....can be tricky without her having hardly any hand control
Leap Frog Activity pads...i saw these at Target the other day and I think she would do great with them!  Other friends have said they are easy for our specials to access.




 Little Tykes Garden Activity Mirror











As far as clothes, she just switched into 24 months and about size 3-4 shoe, but really, I think we are set on clothes with all the great hand-me-downs.
Could maybe have another swimsuit, or some fun summer shoes, hairbows.  But really probably doesn't need much in this department either.
Again...We are so blessed and she doesn't just need stuff because you feel you need to get a gift.  Just spending time with us, loving on her is the best gift!!!!


4.30.2014

Changing some things up

As you have probably noticed, I have been a little quiet with blogging lately.  If you know me, that means because there are not great successes to share.  While at 3 months, we saw at least a 30% reduction in Maggie's seizures, since then, I can honestly say, there is not much worth sharing.  I felt like we made 3 steps forward, but have gone 2 steps back.  The positive is that we have still moved forward in all of this.  For a while now, we have known we are not making the headway we would like to, but there are so many stinkin variables that we have been unsure what (if anything) we should change up.  For the past few months, she has been working on these terrible 2 year molars.  At times, it has been absolutely miserable.  We have also been in the lllooooooooonnnnnnnggggggggggg process of weaning her off her 2nd pharmaceutical.  In this wean process, we have had to stay on top of detoxing her liver with our manual therapy.  The dilemma has been do we just continue to hold our own for a while until her teeth get in and we are weaned off the pharmas or do we change some things up now??  and beyond that, what do we change up???
There have been a few option we had been pondering.  Finally, I took some of the oils into our therapy and had them help me "test" them on her for dosages and what to do.  The conclusion they came up with was right on par with what I was feeling we needed to do, so that was very affirming.  They did help me figure out the specifics a little more though.
So...our game plan over the next few weeks....
-Continue to the Sabril wean  (we have about 12 weeks left as we stay the course)
-Instead of our IMT (therapy) every 2 weeks, we will go weekly for a while to stay on top of her liver detoxing and to continue to cover more ground
-Add THC-a to her mix.  This is another form of cannabis oil.  THC-a is a different cannabinoid in the plant that is anti-spasmodic.  Another good friend of ours started on THC-a before starting CW (Charlotte's Web), and Millie's infantile spasms have essentially disappeared.  For those wondering, THC-a is actually different that THC.  We have started her at .02 ml (which is nearly nothing), working her up to 3x/day.  Since we started, I am already seeing more smiles (and some laughter) again, and over all, she seems more content and her withitness is improving again.  Encouraging and exciting!!  Spasms??  Hard to tell.  We'll probably plan to count again soon.
-And the final action plan is to decrease her CW to about 2/3 of where we currently are.  Interestingly enough, as it builds up in their system, we are finding that kids are having better seizure control once they go back down to a lower dose.  Hmmm...
 -We also will be having PT, OT, and ST coming out to the home this week and will be getting evaluated next week at the Anchor Center (a premier vision therapy center in Denver)
So we are anxious to see how this changes will help her improve over the coming weeks.  It'll be nice to feel like we are moving uphill again instead of just treading water.

In other news....I hate politics!
And....we are very excited to have family out here (lots of them!) over the coming weeks!!

Side note...Maggie's 2nd birthday is coming up and it's a PURPLE DAY.  I never give enough heads up, but this time I am.  Make sure your laundry is washed and ready for May 15th!

4.07.2014

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



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

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

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

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

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

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

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

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

2.11.2014

3 months in and 30% reduction!!!

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

2.07.2014

Government 101 Refresher

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

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

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

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

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

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

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


1.09.2014

Great things in store...

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

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

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

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

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

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

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

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

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

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

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

Deep in thought





12.06.2013

IOWANS:: Please read!!

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


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

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

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

Turned a corner and Dr. Sanjay Gupta and a handful of pictures

 
Yes, you read that correctly, Dr. Sanjay Gupta, chief medical correspondent for CNN, was in the house!!  Not our house, but a house we were in.  He is preparing for another documentary, WEED 2.  He is aiming for this one to be more medical and scientific (traveling to Europe and Israel for research), but he is also going to highlight this crazy migration to Colorado, all the families moving to gain access to an amazing treatment.  Our Realm family get togethers are always so wonderful.  It was pretty neat being able to welcome Dr. Sanjay and his crew into the craziness.  They were only going to interview a few families, us being one of those few.  But, as he went around, everyone began to share their story with him.  The love and care he showed for each children was SO sweet.  We waited patiently as he made his rounds and we actually ended up being the last interview (around 10:30), so it was quieter and we were able to sit at the table and just chit chat a bit.  He is just as nice in person as you would expect.  At one point during our interview, I even noticed his eyes start to tear up.  His heart truly is in this!
This is what it is all about!
From talking with him after the interview, one thing that was really impressed upon me was, we've got to get people to answer the question...either it is medicine, or it's not.  From my vantage point of all the children it is helping and other individuals I know it has helped, it CLEARLY is medicine.  (I won't go off on a tangent about ignorant people, though I easily could)
One last funny thing about the interview.  Most interviews I just wear the mic and then sit with that side closest to Shawn.  The camera guy pointed out that we wouldn't be able to pick up Shawn at all.  Shawn's response was, "that's ok, she does all the talking anyway."  We decided to put a mic on him anyway.  After the interview was over, the crew pointed out, "I thought you weren't going to say anything Shawn."  He had plenty to say!!
WEED 2 is expected to air sometime in the Spring, probably March.  Don't worry, we will keep you posted as we know more!! 

Hanging with her buddies!
In other news, Maggie seemed to turn a corner on Monday.  However, after I posted about our trials on Saturday night, she slept through the night!  (I knew y'all would be praying for us).  The only this is, is that this hadn't happened in quite a while, so when I woke up at 5:00 am and realized she hadn't awoken and  given her condition over the past few days, I was really concerned.  I got up to check that she was in deed still breathing, and she was.  Shew!  The reality of uncontrolled epilepsy is that any given night could be her last...then again, that is true for all of us.  Some just have a higher risk factor.  (I could go off on another tangent about deaths from uncontrolled seizures vs. deaths from marijuana overdose...oh, that's right, it's zero from marijuana!...I guess I did go off on the tangent :))
At any rate, we did up her MMJ just a smidged and she got her spunk back.  And since, we have continued the Zonisamide wean.  And, again tonight I noticed a bit more irritability out her.  Thus, the rollercoaster ride continues.  Until all these toxic drugs are out of her system, I think we are in for a ride.  Hopefully, by Saturday we will be about 1/2 through this wean.  After Zonisamide, we only have 2 more to go, which could each take a couple of months....Grr!  We are in it for the long haul though, with the big picture in mind!!
This week, Shawn started a temporary job doing some after-construction cleaning.  The next couple of weeks might be a little crazy juggling him working and me working, but we have a great small group that is willing to help with Mags as needed when we overlap, and we need the income!!

Also, we finally got the final word that Shawn had been accepted to Seminary.  We were banking on it, so good thing there wasn't a curve ball with that!  Now just a couple more weeks and we should be able to move into on campus housing, which I can't wait to unpack and get settled.  Mags and I have been in transition for nearly 2 months now.  That also means we might get back into a routine and get her program started back up again!

Our sweet friend Holli lovin on the Magster

THE Charlotte of Charlotte's Web