About Us

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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.


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

1 comment:

  1. Rachel! Can I take some pictures of you? Let me know when you're on campus and we can pop over to Hudson Gardens or something for a few belly pics!!!! www.foreverandeverettphotography.com