About Us

My photo
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.



Yes...it's really here!  Many would say that you change a lot in your teens and grow into who you are.  My dad once said he would argue that 20's are your most defining decade.  I think I just might agree.  As I look at life, the first decade you spend learning how to be independent...learning to crawl, feed yourself, walk, talk, read, write, etc.  The teen years you think you know how to do it all, and then 20s I gradually realized that what life really takes is not to be independent, but dependent on the Lord.  In the past 10 years, I have gone from walking on my own back to a crawl before the Lord, learning that less of me means more of him.
It's amazing to think through the past 10 years..I completed college, was preschool ministry director, lived with my grandma, backpacked through Europe (adventure), traveled to Tanzania for missions work, student taught in Chile, mourned the loss of a great friend's life, moved to Florida, worked at Disney (fun), moved to Iowa City, was children's ministry director, began teaching pre-k (responsibility), lived completely by myself (better experience than I could have dreamed), took up running, completed a 1/2 marathon, met the love of my life, married, purchased our first home, navigated crazy married life-Ahh!, got a puppy (really shows settling down), then another puppy, made multiple treks between IA and TN, piloted the opening and directing of a childcare center, moved away from friends and family, experienced the heartache of miscarriages, worked sun-up to sun down while pregnant,...and my favorite....became a Mommy!  With that came...a ride in the ambulance (I waited 29 years for that..Maggie wanted to do it at 6 weeks), vacationed at the hospital multiple times (again overnight stays were a first for me), logged many miles in the car, learned a lot about the body and health, became a therapy scheduler and exercise helper, researched, researched, researched, became a Mama Bear (as needed), and I learned to stand firm on who I am and what I know!
I'm tired just typing all this.  I keep telling Maggie I think she has aged us more in the past year than all our years combined!  Though it all seems like a wild adventure and a lot of coming and going, I'm confident the Lord has been leading each and every step of the way.  It's just whether or not I always follow and obey so quickly.  I've learned a lot about myself over the past few years and am excited to keep learning.  I would say that this decade I have become much more dependent and reliant on the one who created me!  I would consider it very defining.


Results from Vandy appointments

I guess I should update since I kind of left things on a sour note the other day. First of all, thank you so much for all the prayers. I can definitely tell that we have been basking in His presence and I am confident that it's from all the diligent and faithful prayer warriors interceding for us!
Getting Maggie set up.  She was letting us know she was still hungry!!
Wednesday was a fresh new day. Even though I had to wake her at 3:45 am for a feed, she went back to sleep and had a great night of sleep. She was a gem when she woke up...took her am meds like a champ (has been gagging, etc. as of late with those). She managed to get all the way to the hospital and waited until about 5 minutes before the test to remind us that she hadn't eaten. We made sure my mom held her to try to comfort her. Otherwise I would just be taunting her, knowing the good stuff was there but she couldn't have it. The great thing is she had worked up an appetite and ate up super for the study. It was pretty neat to see her little tongue pull the food/barium in and see the mechanisms of her throat help it travel down her esophagus. All was well! She was fine with that. And she sure was ready to finish her avocado and her bottle afterwards.
She got a little catnap while we hung out in the hospital cafeteria. I woke her from that so she would still be tired for her Sleep study. We headed up to that. She was a little fussy as we started to get her hooked up, but as soon as I wrapped her in her swaddle sack she was content and went into a very peaceful sleep! Couldn't have asked for it all to go any smoothly. Once that was done, back to the cafeteria to kill some more time. Daddy also met up with us. Maggie had such sweet smiles when she got the chance to snuggle with Daddy.
All too familiar of a picture, but she has a lot more hair this time around!
As she started to get sleepy, I put her in the sling carrier and up we went to our neurology appointment. That couldn't have gone much better than I could have wished for (except  for him to say nothing is wrong at all anymore-maybe someday!). After reviewing the EEG he did comment that it looked like a different child than what they were used to seeing for her. It is still considered abnormal but we know that. Basically, anyone with epilepsy shows these random spikey things throughout any given EEG. Hers had that still, which is to be expected.  But, the really nice part is that there were not any seizures recorded. Given the previous nonclinical (not seen by looking at her-only detected on EEG) seizures from previous EEGs, this was great news!  With all her eye flutterings and other things going on, for them to not see any, was great.  He even said she had some good sleep spindles in there, for whatever that's worth!  He is still pushing for the exome sequencing, as she could be an excellent candidate to help others down the road.  Our neurologist actually spends a lot of time in the lab and not much in the clinic.  He also spoke with us about another research project where they can take a very small portion of skin and grow it into stem cells.  Then they can see how it reacts with various neurons, etc.  Quite interesting and might be something we do next time she is under anesthesia.  He could also take a sample from Shawn and me and study the variations.  Though our neurologist said we may not get to name a new disease, we already decided it will be "Mags syndrome".  However the variables they probably won't take into account are her therapy and diet changes.  But, I'm not too quiet (I know...hard to believe).  So, if other parents have a child with similar symptoms, have no fear, I will tell them what has helped her the most!  (in combination with the medicines, of course)
Oh...another exciting things is that we get to be completely done with one of the meds.  We have gradually been weaning it and now we get to say farewell to the Trileptal!!!  1 anti-convulsant down, 3 to go...In a couple of weeks, we will begin the wean from the Clonazepam, which I anticipate to be the most difficult wean.  It's a tablet, so there are only so many increments we can make.  It is also one that her body easily could have become resistant too, but dependent on.  So, I expect things to get a little worse before they get better, but we'll see how it goes here in a couple of weeks.
I think anxiety was playing a big role in my emotions leading up to the appointments.  Knowing she was not doing well from a clinical perspective and anticipating the worst with the EEG.  Praise God that I was pleasantly surprised!!  In regards to her growth, I am not terribly worried.  Yes, I am concerned, but it completely makes sense to me.  First of all, throwing up for 3 weeks, not only did she not gain, but she also lost weight, so that threw us off the curve right away.  She actually had been gaining fairly decently after that, but the last month, not so much.  Given all the other variables the past month, once again, no surprise to me.  Plus, we delayed starting solids for a little bit.  Most babies start at 4-6 months, and we just started at 7 1/2 months, so that explains a lot too.  I think the concern from the GI doctor about her weight is good, because I have now created a game plan and am motivated to implement a very intentional progression of solids into her diet.  Due to continued constipation, we are backing off the bananas and introduced pears today.  Hopefully they will help get things moving better and then we will keep adding in a couple of days.
In a nutshell, appointments went well and Maggie was on her best behavior.  We are taking her month 7 off the record, given it wasn't that pleasant, and we are going to start moving forward again, now that she is 8 months old!


New stuff added to Etsy site!

Brooke has just updated the Etsy site with new Valentine hair bows, some hats a friend helped contribute, and some all-purpose/burp cloths my Grandma made.
Check it out to see if anything suites you. You can access it through miracle4maggie.com And thanks to Courtney, Great Grandma Sue, and of course, Auntie Brooke!

Also, coming up for any horse riders will be a benefit ride in honoring of Maggie at Eagle Ranch, the campground my mom and stepdad run in Collins, MO. The weekend of Is April 26-28. More details to come.

Back to Vanderbilt

Here we find ourselves in Nashville again. Just for some doctor appointments (so we hope)
This past month has completely been an up and down all around rollercoaster. Most of it is "typical" baby stuff. Except everything with Maggie has a few extra variables in the equation. Trying to know how to best meet her needs and comfort her has proven to be exhausting. I thought yesterday was a turning point, better spirits, good naps, etc. and then last night hit...fussy is an understatement. Her core was so hot it was difficult to cool her back down. Luckily the fever broke and began creeping back down. My mom has been here the past week. All three of us (Shawn, Mom, and myself) were diligent in trying to lower it. However, her sensory seeking needed to feel safe with something covering her amidst us stripping her down. Finally, we were able to comfort her and she was able to get a little bit of sleep. Not so much for Momma or Grandma. By the time she was calmed, it was time for us to be getting moving for our busy day.
We had therapy in Knoxville this morning and then got to Nashville just in time for her GI (gastrointestinal) appointment. Unfortunately our at risk little lady has dropped into the 2nd percentile for weight. That's not so good. The doctor scheduled us for a swallow study just to check how all the mechanics are working. She also wants us to get bi-weekly growth checks again. Woo-hoo...another thing on the schedule. Not like we aren't coming and going enough!
So, tomorrow on the agenda...
8 am-swallow study
10:30-EEG study
1:30-neurology appt
Daddy meet up with us and take us home. Say goodbye to Grandma and send her off back to Missouri.
All weekend long-REST, REST, REST
Maggie and I already had a little discussion that she needs to be on her best behavior so that this snapshot of what's going on is good! I'm not convinced it will go that smoothly. She has definitely had some issues this month. Plus, these stinkin' teeth have already proven they are going to wreck as much havoc as they can.
If you could say a few prayers for us, we would appreciate it for these tests. Also for little miss to start packing on the pounds. And for momma and daddy's sanity!
I've noticed I am starting to default to my sinful, short, sharp, and critical self. Probably a slight dose of depression for both of us as we feel oh so helpless too. As I learned a few weeks back from a friend, "Lord, renew a right spirit within me!" is on my lips regularly (and probably should be even more often)

Little Miss is 8 months today. I told here we can go back to the moving forward this month and we can all forget about month 7.