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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.


Miracle 4 Maggie bracelets and bows


My family and some of their friends have been working diligently on some things for Maggie. My sister created a website to help streamline information and donations for Maggie's treatments. She also has enlisted some helpers and has been busy making hair bows and opened an Etsy store as an additional fundraiser. In light of CyberMonday, if you might know of any little girls that could use a hair bow for Christmas, or someone that would want a decorative brooch, check it out. They've made some pretty cute stuff.
My dad had a bunch of prayer bands and info cards made up as reminders for people to be praying. Zebra print ribbons are for rare disease/disorder awareness...we thought that was kind of fitting for our "rare" little lady. The purple print is for epilepsy awareness. We know that the absolute best recovery treatment for Mags is prayer! Next time you see us or our family let us know if you want a prayer band reminder. We'll be handing them out.
We have been overwhelmed by the support, both prayers and financially. We are continually receiving generous checks. We cannot even begin to express the burden that is lifted as we try to make the best decisions for Maggie's care. Even more so though, our hearts our warmed tremendously when we hear people everywhere are praying for her continuously. The prayers of little ones are especially sweet when momma's relay to us that their kiddos pray every day for Maggie! How precious to this momma! Keep the prayers coming...our sweet girl has been doing good! She continues to make good strides each day.


Good (and not-so-good) distractions

Things have been going fairly well with the little lady.  Then again, I've had a few distractions (named Ava, Myka, and Ella :)) that have gotten my mind off all our issues for a little bit.  My older sister and her family have been here and are staying until next week when we head back to Iowa.  My dad and youngest sister were here over Thanksgiving as well.  It has been such a blessing having them all around.  Maggie definitely lit up to my dad's voice.  Then again, my dad's voice carries so much (huh, where do I get that from?!?!) I'm surprised Maggie can't hear it from Iowa still.
She has been thriving with the little girls around too.  And, the best part is that my sister has been helping me and motivating me to get the house deep cleaned!!  I can't wait for us to get Christmas decorations out this year, but the house has been in serious need of attention first.  Brooke has also helped navigate some cooking ideas.  Works kind of nice only cooking every other night.  And, Tyler has been helping Shawn with some of the things on my Honey Do list!!  What blessings all around.
The not so good distractions...in the midst of the crazy stop and go traffic in Knoxville on Wednesday, I managed to not get stopped quite fast enough and put the Honda out of commission for good.  The brakes need a bit too much attention after being slammed on so quickly.  I was close to clearing the car in front of me as I tried to get to the left, but didn't quite make it.  Thank goodness that otherwise it wasn't that bad and nobody was hurt.  Maggie slept right through it.  Just in case, I implemented some of the neuro-facial processing that I have acquired.  Dad and Audrey were with me by that point too, which was good for me to hold it together.  Surprisingly, I was quite emotionless.  Mostly because it's just one more thing.  Not surprising for our life at this point.  The family in the car in front of us were very pleasant and gracious.
And then Thursday came, and I managed to throw our gluten-free, dairy-free, GMO free, sugar-free, beautiful hard loved creation of a pie all over the floor.  We had to laugh, otherwise I would have cried.  (that's one of my family's mantras for life)  Not much of what was coming out of the kitchen from my sister and myself was turning out so fabulous, and the pie was one of the best things we had going for us.  We couldn't bring ourselves to clean it up, so we left it there all over the floor for a few hours.  Everyone got a few laughs at my expense and stupidity.
Needless-to-say, Maggie hasn't quite had all my undivided attention.  The positive is that she has definitely been getting attention!!


Connecticut trip and ramblings

So, it has been brought to my attention that I need to fill y'all in about therapy in CT.
It all went very well. I'll just throw this out there first...the debatable component is whether or not professionals can use their hands to diagnose. I think of it as the same way that Shawn uses his ears to assess the audio at a job and then adjust accordingly, or the way a doctor uses his eyes to read an MRI. Different trainings, different tools, but we have found it all to be reliable!
When we first got there, we went over Maggie's history. At 6 months it's complicated and takes forever. By the time she is 16, I might as well make day long appointments just to go over history. They also assessed her functionally, holding her head up, tone, reactions, etc. Then a therapist did the mapping. By touching different locations as part of different systems, she was able to identify which systems needed attention. And then she was able to identify the priorities based on these rhythms. Seizure activity protocol did come up as most important, which just because someone has seizures, that doesn't always mean that is the most important thing to address. I really think timing was perfect. I know the work Piotr did with Mags and her colon, specifically her sigmoid, prepared her to be able to work on other things. So, they spent the majority of the first day going through seizure protocol. Other things on her list were ECS ( electrical circulatory system), heart, eyes, limbic system, liver, spleen, and a few more- can't remember the rest right now. This visit they worked on the top 3, which were all big things.
Now, the things they identify and work on are like fine tuning a piano to get it to operate optimally. And we walked away with the overall idea that we need to lighten the load on her body any way we can. Hence the reduction of known foods/proteins that can aggravate the system. They did use the term fragile for her. I prefer when one of the therapists said delicate.
Handle with care is still essential. Basically, try to keep her in a bubble to some degree to let her body try to recover and repair. And it's ok to go outside the bubble some, but for brief times. I needed to know that, because it flies in the face of my general theory for kids-exposure to experiences and life doesn't stop just because there are little ones around. Which with her, my theories on kiddos are constantly evolving. We already hang at home more than I would have expected. Well, maybe not that much given all the appointments, but actually going out and doing stuff, I guess. Looking back, yep, we took our bubble child to concerts (there's only 1 or 2 of all we went to in her first month of life that I really think would have overloaded her a bit.). And then there is RAGBRAI, a full experience in and of itself for anyone. Nothing we can do about that now though!
So, back to the therapy. In terms of biomechanics, the one therapist also identified that she has a descended sacrum. Here is a concise article I found describing it and how it all relates in lay terms.
In a nutshell, her hips are scrunched up on the spine. Her sacrum is also pulling down to the left as well. As I originally presumed, her breech position definitely could have contributed to this. With this pulling down, they noticed most things on her left side are pulling down a bit, particularly the heart. Now, let me clarify again. It's all the fine tuning. It's not like she has a glaring heart issue, but even the subtlest things can have an impact on overall health. If her body has to take just a bit more effort for this or that here and there, then it gets to where solely surviving becomes crucial. This also affects the sheath dura encasing the spinal cord and brain. Visual nerves as well. (Which travel all the way to the sacrum and I think someone even said to your feet-not sure on that one though). The founders of this IMT actually worked at Upledger together, the cranial sacral therapy I was originally adamant about trying to get while at Vanderbilt.
Ok, I just got completely distracted researching cranial nerves and then the different Chinese meridians and what foods impact them. It is phenomenal to me how our bodies are so interconnected. And how The Holy Spirit leads me in making connections and putting pieces together. As I research and have my "ahh...hmm.. that makes sense...no wonder this is affected" moments, it reassures me when we are going down a particular path. Sorry for the detour there.
Other things they worked on...there was some restriction/tightness with her carotid artery, causing her to be protective with her neck to the right. One therapist, also stuck his finger into her mouth and did some intercranial release.
The last day they went through all the supplements for us. They actual test things against us. I knew about the whole "testing" going into this, and I have to admit, this is where I've been a little skeptical. Simply by holding the supplement, still in the container, up to each of us, they could tell if our body agreed with it or didn't like it. They feel the lymphatic rhythm (I think) gets slower or faster. Ok, so she was checking them on me and Maggie and I was just watching. Without saying anything, I noticed that the hair on my arm went up against one of the bottles. That was one she said didn't test well on my body. Still suspicion, I kept watching and the next time the hair on my arm went up, I suspected she was going to say no. Sure enough that one was one I didn't need either. She was feeling the pulse, not watching my hair. That was just a way to confirm that I could trust the testing. We also had them test Maggie's meds to see which ones we should aim to get away from first based on how they tested. One was completely fine. One was so-so, not really bad, but not really needed. Then one was not good and one was really not good. Funny thing is, this is exactly how I would have ranked them in ones I would like to get out of her system. The one that was good is one that I never really have had any issues with giving her-probably will be one she is on for a while. Granted, they are not neurologists and don't have concrete results for that, so it's not a reason in and of itself to just up and stop those meds-that would be crazy! But gives us the direction to aim for. There doesn't seem to be a real concrete reason in the neuro world why one med over another and they have told me it's just the possibility of this or that med contributing to x% of seizure control. With the whole "testing" I just think we completely underestimate the depth to how God created us and how extremely complex and intuitive our bodies are.
So, the supplements...I said to Shawn, "what's another $100-150 or so, we should probably go ahead with them if they recommend they will be beneficial in restoring everything for her". How naive was I...I went to check out with them and $650 later... Yowzers! I was a little pale after that. :) I really do think they will aid in immunity and digestion, etc. And, since she solely gets breast milk at this point, I take the supplements, so really, it's a 2 for one special! And, I think most will last quite a while. I figure even if we just take them to get her over this hump of being fragile, it's surely worth it.
Other things we learned:
All of the therapists there are gluten free because they realize the pro-inflammatory nature of it and the auto immune issues that go along with it. Also, sugars, along with lots of other junk, overtax our bodies and are essentially a neurotoxin. They felt very strongly about diet and the overall integrity of the body.
We were reminded that normal and optimal are two different things. Many new mommy websites would say if a baby poos at least every other day or so, that is fine. Maggie literally had at least 4-5 poopy diapers each day while we were there. She was getting rid of all the waste and toxins in her body. And to imagine that stock piling for a day or two and it being considered "normal" is slightly disturbing. It comes as no surprise that overall health of children and people in general is declining as we constantly redefine what "normal" is. If we truly believe that our bodies are a temple, as God's Word says, then we should be striving for optimal health.
Overall, it was a little new age-y, which in and of itself I was not real thrilled with, but, as Carla said, it's all in where you give the credit. It was an opportunity to share our faith a bit. And, it makes me even more grateful and appreciative that our primary therapist is a Christian and we are entrusting Maggie's well being into his hands. One more side note that made me laugh....they had a booklet with various elimination diets, ex. dairy, sugars, alcohol, T.V., talking (Shawn thought this would be good for me!). It was explained to us that doing an elimination diet from something you think you need or crave helps to rebalance your limbic system. The booklet said on the front-a NEW healthcare something or other. Doesn't sound so new to me. Sounds kind of like a fast! And even though the primary purpose of a fast is spiritual, it amazes me that there are clearly physical benefits to it too. God is so multidimensional and always for us.
I'll finally end with the improvements we are seeing already:
She's moving her head from left to right much more.
Within 2 hours of heading towards home, she started to cry in the back. I looked at Shawn, "those are new sounds for her!" She is adding to her vocabulary.
Her hands are more open vs. a clenched fist.
When she wakes up, she pulls her hands towards her face and actually rubs her eyes!
She's bringing her fist to her mouth much more!
And overall, she just seems much more "withit"!

I said that was it...just kidding. What do we do from here?!
Piotr will continue to see her 2 times/week. We have about 72 hours worth of homework ( can go quicker with more hands). And they want to see us up there again in a month. I asked about going to one of their center branches in Atlanta, but they said they are not ready to give her up yet, given her still delicate state.
Our last hour of therapy was with one of our favorites. As I was talking with her, I would get teary eyed at various times. When Shawn looked at me and asked why I was crying, I told him, "money". But there was a lot going on for me:
1) I did just spend $600 on supplements and I knew this next visit was going to be another big expense to pull off
2) I had already seen they had helped her so much, I didn't want to leave without her completely "fixed" (which may not be)
3) and overall, fear was just creeping in with how are we going to...? What if...? Yadda yadda yadda
It's amazing how Satan tries to get a foothold wherever he can (and sadly, finances usually are a big hurdle). But we know that God provides every step of the way and he will take care of our needs!
Oh yeah...our house in Iowa sold on Friday! We get to wipe our hands clean of that.
Crazy week all around!


Getting to Hartford

Synopsis of our trip...(though it probably won't seem so condensed)
Just after I posted, we did stop at IKEA. I went in shopping with Mags in the sling. I was trying to be as quick as possible, but, yes, we took ample time to get through per the normal "experience". Maggie got a bit fussy partially through, but then fell asleep. I had been wondering about additional stressors, and I noticed this time that once she couldn't deal with it any more, she just shut down and slept. She did sleep really well on me.
Interesting...she goes into protective mode. I'm now beginning to refer to things as toxins (or overstimulation) that she has trouble processing, or protective mode, when she shuts down to be able to do the most necessary functions. The balance is providing experiences and trying to prompt her to process stuff without overwhelming her systems. Through discussion with one of the therapists this week, in her current state, she probably does need to be in a bubble for the most part and can definitely come out of the bubble, but in little doses here and there.
That isn't really the route I expected to go down with bringing up the IKEA trip. What I was trying to say is...when we finally left Paramus, NJ, we got stuck in some traffic, and then....we watched the temperature gage on the Honda (aka NinjaRocket) climb and climb and climb. A few weeks back we were out of coolant and had been keeping our eye on it, but I haven't really had and issue as of late. Shawn was able to pull over and pour some coolant in, only for it to be puked out everywhere-Lovely! Of course, in typical Selmeski fashion....we found ourselves dealing with car troubles. Then again, why wouldn't we?! However, being on the side of the road in the Midwest or the the South is a bit different then in the middle of traffic in Jersey when auto shops are close to closing up on a Saturday. We began trying to hop along. Turning engine off while sitting, and turning it back on to go 50 feet. As the gage climbed all the way into the red, Shawn began cussing at the car, Maggie was cooing in her seat happy as could be, and I sat, trying to be as quiet as possible. We did make it to a Midas shop. Not good news. Head gasket failure is what they had to say. It was looking like we would be laying our beloved to rest there. Oh crap...we began exploring all kinds of options. Taxi to Newark then rent a car. Bus. Hotel. Anything. None of the options were very viable. Expense and a car full of stuff and we couldn't just abandon the Honda. Hmm...
At about that point, I talked with my sister for a bit, to have her look for bus rates better. When I told her about the predicament, her response, "well crap, I even prayed that satan wouldn't get a foothold with mechanical problems". I think she knows us just a little bit, and that pretty much sums up that experience. (Even though Shawn blames it all on me having to stop at IKEA).
Shawn ended up having the brilliant idea of pouring some block sealant in. The guys in the shop felt bad for our sob story of on our way to get therapy for our daughter. They found some of the manager's personal stash in the back. Also, the older couple that I was chatting with inside offered the gentleman's coat for the baby. So much for those cold Jersey folks. :)
The sealant worked and we got moving a little apprehensively. I think Brooke may have been fervently praying for the situation too. Our goal was White Plains to catch a bus to Hartford possibly, but we were moving so well we decided to see how far we could go.
Since it was doing ok, we swung through Shawn's hometown of Pleasantville, saw Grandpa Frank's old body shop, the high school, and the home he grew up in. We even spoke with the current homeowner for a bit. It was great to see where he grew up, but a bummer that it was so dark.
Finally, we did make it to the hotel outside of Hartford. We were all ready to crash!


I guess we are long overdue for an update. We have just been treading water lately. She was making lots of progress for a few weeks there. The past week or so she has seemed a little more "off". (Possible seizure activity, but not really sure). I've had trouble getting her to take good naps during the day, which in turn makes her more susceptible to seizures, which causes sleep disturbances, which doesn't allow for good sleep, which allows for more seizure activity, etc.... A vicious cycle that we have trouble getting out of. And makes for a sassy little girl and a checked out momma. I notice myself more blah too. I know my mood affects her, but is it the chicken or the egg first...Her being off, I become more down, or other way around. One more thing to document and observe. She hasn't been awful by any means, just a little more "off".
Along the lines of documenting, I've been trying to track as much as I can and look for trends. As of late, I'm trying to keep my eye on preservatives. And drops in barometric pressure. And my hydration, which in turn is her hydration. I know, crazy, crazy, crazy, but I know that they are all pieces and at some point we will know how her puzzle goes together a little more.
We did just hear back from the neurologist that none of her test thus far have provided any answers. The exome sequencing is looking like a good possibility, he just has to figure out who will pay for it. It is a large scale gene sequencing test that could identify which gene is disrupted. But, it is an expensive test and the cutting edge technology is ahead of insurance. So, the sell to insurance is we may be able to avoid random stabs in the dark for various genetic tests and the more we know what is going on could save additional hospital stays and/or unneeded tests. Or the sell to Vanderbilt is that they could be on the cutting edge with Maggie as a very likely candidate for this test. Now...it could give us answers, or ...it could identify something that's never really been heard of before. We already know she is "rare". So, it could be answers with research, or it could be answers with no additional solution. Either way, it may shed a little more light on what we are up against.
Right now we are headed north. Sorry to some, but not to Iowa. (December 6-11 we will though!) We are on our way to Conneticut for 3 days of intensive therapy. It's the same kind that we receive in Knoxville, but it's the main hub of the therapy and will be all day long Monday, Tuesday, and Wednesday. Carla, my stepmom and a PT, will be flying out to join us. She has been a wonderful sounding board for me as we try better understand the body. We are super excited to spend some time with Grandma! And Shawn with his Mother-in-law! :)
We also got to spend the night with some super cool friends-they were in the children's ministry at the church I worked at in Iowa City in my single days. See picture below of the super sweet Smith girls with Mags. The 4 girls remind me of me and all Mags' aunties! Awesome that they are right on our path and opened their home to us for the night.
Also, I get to find an IKEA-yippee! And, Daddy gets to drive us around where he grew up outside NYC.
And, we will hopefully get to see our niece and nephew, Amelia and Quin, one of the days while in CT.
How I would love for us to explore much more. (This is one area of the country I have not traveled much). But, we are trying to stay low key and not try to do too much. Really sounds like that, right? But this is low key for US! And an adventure nonetheless.

On some side notes...
Please be in prayer for some friends of ours. A sweet little guy we know is preparing for surgery next Tuesday. He is 10 months old and also has seizures. His grandma worked with me at Hal Henard last year. I know there are so many emotions built into this procedure for his family, so please lift sweet little Everett up with us!
I have found great online communities of moms walking similar journeys. It's great that they get it and we can share each other's burdens, being able to completely empathize with one another. A Christian community of moms with child with any disability is a Facebook group called "(in) Able-an (in)courage community". Another group is "Epilepsy in babies, toddlers, and children support group".
Also, I started a "Healthy Homemakers" group for those interested in learning from one another on how to better treat our bodies as the temple God designed them to be. Join any if they pertain to your situation too.

That's all for now. We are almost to Ikea!