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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.


Therapy for Mags and she'd love your help!!

Wowzers...it's been over a year since I posted on the blog!  I have kind of kept up on FB, but I think my lil M & M have kept me a little busy!!  Promise...I'll try to get back to posting on the blog.

It has been so much fun to see Maggie’s development over the past couple of months.  Throughout our journey, I have explored the concepts of an interesting therapy.  It is called ABM (Anat Baniel Method).  I read the book “Kids Beyond Limits” early on and have tried to implement many of the principles as I work with Maggie.  In May I, along with other special needs moms and Maggie’s home physical therapist, had the opportunity to attend a workshop to gain some more insight.  Lucky for us Maggie was also used as a demonstration model with Anat herself.  We noticed changes with Maggie’s posture and neck after this one session.
Over the past few months, our PT has been strategic in working with Maggie and applying techniques similar to ABM.  Amazingly, with these techniques, we rejoiced at Maggie “finding” her hands, making the neural connections for her brain to acknowledge that her hands are attached!  Tears flowed as we watched her explore this new part of her body.  Clearly, the connection has been made and the awesome thing is that it has sustained.  She continues to have them in a relaxed posture and attempt move them regularly.
The next 2 weeks Maggie is on fall break from school.  We all agree that the learning switch is on and it is a prime time for this therapy.  ABM therapists have found that doing intensives with 2 sessions a day for clustered days can be most effective with kids.  So, we have her signed up for 10 sessions over the next 2 weeks of her fall break.  We are extremely excited to see the progress she will make over these 2 weeks.
Please consider helping us out.
1) praying for Maggie to be in therapy mode, ready to learn and make connections.  Also…for endurance for Maggie, Maddox, and myself over the coming weeks.  We will be driving north of Denver for a morning session and then north downtown Denver area for an afternoon session with another therapist (variety is good too)
2) financially…These intensives will cost around $1000 for these 2 weeks.  Since we have moved to Colorado, my extra income has allowed us to pay for her weekly IMT therapy, keeping her red card active (doctor’s visits, etc), obtaining her oil, and weekly travel expensess for therapy.  However, with a big intensive expense like this we would love some help from all of Maggie’s friends and family.  Her paypal is miracle4maggie@gmail.com.
In other news...Maggie is in preschool and she has been doing awesome!!  We have also spent lots of time with Grandma's and Grandpa's over the past few months as I type this sitting next to Grandma Carla!


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


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.
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.
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.

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.

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...