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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.

9.22.2014

Countdown is on!!




30 weeks last week….the countdown is on.  Less than 10 weeks to go!!  I’ve had a lot of people checking in and requesting belly pictures lately.  I guess it’s time for a Selmeski update.  Unfortunately, I guess we actually need to take some pictures of prego momma.

Maggie was not as impressed
The butterflies were so much fun!
 August was filled with some very special visitors.  Two of my best friends were out within a week of each other.  Amber and her family had their family vacation out here.  It was great to explore some Colorado attractions with them.  The Butterfly Pavilion, the Cheyenne Mountain Zoo, and chilling at the beach at Chatfield are worth taking other visitors to.  Amber was tremendous help in getting my kitchen packed up too.  The best part though was just hanging out with the Deckers.  Maggie seemed to really like having little friends around too.

Amanda and I had the weekend to hang-out when Derek was in a golf tournament.  The Newtons are by far our most frequent visitors wherever we live.   Shawn questioned them always following us.  It just happens to be they have “wrestling”, or “golf”, or some reason to be “in the area”.  We figured out while we were in Tennessee, they were down to visit at least 3-4 times.  Since we’ve been out here in Colorado, they’ve been out 3 times.  And we LOVE it!!  They operate in the same just jump in the car and go world that we do.  This time was a quicker trip out without the boys, but a nice chance for Amanda and I to just catch up.

We were also able to catch up with our RAGBRAI friend Lisa while she was out here with her cousin.  Lisa and Sarah both noticed big improvements since they last saw her in April.

In August we also successfully moved off campus to a great house in Castle Rock.  I’ve struggled a bit when I pull into the neighborhood and sit back in the house because I know we are living in a place well beyond our means.  I’ve found myself explaining all the time…”but we are getting a really good deal.”  There is no way our student budget of piecing together income that mostly goes to therapy and fuel to get us all over, should be able to afford where we are living.  Then it hit me….God is blessing us at this time with a beautiful home, and that is ok!  We are so fortunate that our friends offered their home to us for a price we can afford and there is nothing to feel guilty about by being blessed at this time.  A few of our favorite things….we have an attached garage.  I love it because I can easily get Maggie loaded and then gather the rest of everything we need.  Shawn loves it because, well, it’s a garage.  We realized that since we have been married, we have never had a garage.  He had a whole shop in TN, but me…I’ve never had the luxury of parking in one.  Winter with 2 little ones will be nice!!   Also, we have a washer and dryer again and don’t have to go during a scheduled time to use little rinky dink washers that don’t get the job done.  Our other favorite is that we can grill out!!  It’s the simple things!
Packing and moving and unpacking was a little daunting, knowing we would be doing it all over again probably in a year or so.  But, we do seem to be getting settled!  And, we have room, so we can welcome visitors any time!!  (Also, let me know privately if you need the new address)

Going for a stroll with our friend Michaela for her birthday!
On the Maggie front, she continues to be doing well.  Little sassafrass and momma are working on our communication skills.  Her continual communicating (aka fussing) when the need is being met is about to drive momma batty.  Example…she’s clearly hungry and I am shoveling food in as fast as I can, but the fussing continues full force until her stomach realizes there is food in it, which is when she is nearly finished.  There are many more days that Mommy has to start using a firm…”that’s enough” voice, as she is 2 and definitely demanding!!  However, gas bubbles that can’t get out do give us all a run from their money.  And we’ve had a lot of those lately.  We’re trying to figure out this digestion component the past few days.

Maggie is a camping trooper!
Seizurewise, my latest estimate is that they are down by over 75%.  With the exception of some random days, we just are not seeing that many spasms.  These tonics that she developed a couple of months ago are still appearing, but they don’t seem nearly as prevalent as they were a few weeks ago.  Also, we have begun our final pharma wean.  It should take about 8-10 weeks to get her off Keppra, and then we will be done with the pharmaceuticals!!  (Disclaimer: I had this typed up last week, and then over the weekend, she had tons of gas issues and we were seeing more spasms again….)

She battled a cold a few weeks back and we could tell she felt rather puny.  Aside from ongoing irritability and edginess, she really has recovered well.  It seemed to take a good 2 weeks, but that appears to be the norm for what’s floating around.

Two weeks ago, she finally moved up to the 2 year old room at church.  I realized she would still be in the nursery at 10 years old if we waited around developmentally and she’s not a baby any more.  Time to give her the big girl experiences.  There will be some adjustment to being in this room, teachers figuring her out and how she can be involved and mommy’s expectations may not always be met from time to time, but she’s done great.  The kids love her and will bring toys over to her or the one day I went to pick her up and a little guy was standing next to her rubbing her hand, talking away to her.  This warms my heart so much!!

Neither are real thrilled about the first day of school.
Also, we have been trying to implement her “school”.  Between her not feeling so hot and running to other appointments, we have not been the most consistent with a schedule, but she does seem to be doing really well when we do.  I can watch her little brain process away.  Since we did the program in the spring, the biggest improvement I have seen is with her vision and tracking.  She is definitely more aware and looks for the light with her eyes.  The other cool thing is our new crawling ramp.  Though she will be rather vocal about having to crawl down the ramp, she really is a super star.  Mommy helps to get her toes dug in so she can push off and she needs help getting her arms up to move forward, but she puts forth a lot of effort to get herself moving down it.  The cool thing is she completely knows when she gets to the bottom and can feel the carpet on her cheek.  Then she’ll calm down fairly well.  And, we have noticed that the motor activity has increased her attention during the visual/auditory/olfactory learning time.  We’ve been thrilled with what Daddy came up with for a ramp. (and we have room for it here…kind of)

Daddy's big projects at church look GREAT!!
In other news, Shawn began the new semester.  However, within a couple of weeks, he quickly realized just how overwhelmed he is.  Doing all the technical stuff and worship at the church, working in the body shop, going to school, having a daughter with severe disabilities, and a baby on the way.  It doesn’t help that there were 2 big projects at church that demanded a lot of time right at the beginning of the semester.  Probably should not be considered a compliment, Shawn’s advisor pointed out that he is the most overloaded student she has ever met.  She asked when was the last date night and made sure he realized how bad it is if he doesn’t know what a “date night” is.  He dropped down to just a couple of classes and his goal for this semester is to learn how to implement rest effectively!  We’ll see how this goes…

All seems to be going well with the baby.  We just transferred all my care down to Castle Rock, so instead of driving 40 minutes to deliver this baby, we are less than 5 minutes from Castle Rock Adventist.  If push comes to shove, I can load Mags in the wheelchair and walk the 1.5 miles to the hospital ourselves.  J  At my 30 week appointment last week, I was within a lb of my full Maggie weight.  With 10 weeks to go, I have a feeling I might be gaining a bit more with this one.  Shawn would be quick to point it is all in my thighs!!  I might agree a bit.  The baby is crazy active though.  I’ve been seeing a chiropractor to keep me in alignment, and I think keeping my hips for rotating forward like I tend to do, has helped keep my pelvis opened up and provided room for “Elvis” to freely move about the cabin.  Now that we are getting closer to baby, we need to get serious about a name for this kiddo.  Though we are waiting to find out if it is a boy or girl, to all of us, he’s a he.  Ironically, everyone that cares to comment also says he.  Poor girl if the baby comes out a she.  At any rate, since we are planning for boy we are needing help for boys names.  If any of you saw the ones Shawn has brought to the table, you know just how desperate we are.  We are now taking suggestions.

One more side note and some exciting news…it is possible that Maggie might be able to travel soon.  With the plants being grown as hemp under a farm bill vs. as marijuana, the Stanleys will soon be able to ship Charlotte’s Web throughout the country as a “dietary supplement”/”foodstuff”.  This designation is similar to if we were using hemp seeds or hemp milk.  It is an ambiguous part of the law, but by being grown as hemp, it provides much more flexibility.  We’re still waiting to see how this all pans out and will navigate the waters as we feel is in Maggie’s best interest.  Maggie is on THC-A, which proves to be extremely beneficial for her, so if there is any travel, she would be without that for the duration of travel.  We’ll see…


Sweet Smiles!!  Love when we see these

Douglas Co Fair






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)