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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.


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!

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