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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.

11.15.2013

Getting a little more established

Lots to write about this week.
trying to catch that glimpse of a smile
First off, a gal from our small group works for WorldVenture, a missions organization.  They have guest rooms, suites, and condos for missionaries to stay in while they are back.  Fortunate for us, one of the suites won't be in use for the next month.  What that means for us is we were able to move out of the "on top of one another" extended stay into some pretty deluxe accommodations.  We kind of feel like we are staying at a ritzy 5 star hotel, that we could never afford.  And the best part is that it is cheaper than the extended stay!  More space, nicer, and cheaper=Win, win!  So we moved on Wednesday.  Yeah for the body of Christ working together!  Have I mentioned how much we LOVE that God had prepared our new church and small group for us so we would fit right in.  He knew that was a vital component and has blessed us tremendously!  (Not that we don't miss our old life group-cuz we do!  Y'all just gave us the something more to strive for!!)

From this....
....To THIS!!!




My sister attended a panel discussion on Medical Marijuana back in Iowa.  Before she went, she was nervous about not knowing what to say or really even wanting to speak up, but the discussion lended itself to the opportunity for her to pipe in when a question about "the baby in the newspaper" (Maggie) came up.  And I guess Brooke had more to say than she thought.  By the end of the night she was having to tell herself "you don't have to comment on everything".  Way to go Brookie!!  A neat thing was that one of the senators on the state level, actually had my letter in hand at that meeting and talked to Brooke a little more about our situation!!  We're glad she went to represent!  And, awesome that I have the ear of a few legislators, now we just are awaiting the big results to be able to knock the socks off everyone!!
Yesterday we did another interview with a reporter out of the Springs...Channel 5 NBC, should be airing Sunday evening.  We are determined to be loud in sharing our story and allowing reporters to walk the journey with us, not only for us to visit family, but for all the families that are not in a position to up and relocate.  We are so fortunate to be in a place in our lives where the ship really could have sailed anywhere.  Not everyone can up and move, and it is heart wrenching talking to those parents when they know there is another possible treatment option but they cannot access it for their child!  Laws need to change!!

Yesterday we also went to new therapists.  Everyone knows that Piotr and his team are irreplaceable to us, but God has still blessed us with 2 sets of new hands.  We are paying out of pocket for now, because we know how extremely valuable the manual therapy is for Maggie.  However, we are not positive insurance will even cover it once we get that all established.  Please be in prayer for this, as we were so blessed to not be financially limited by our visits to Piotr while in TN, and for her, we can't be limited here either.  I know it is alternative, but I've said it before, IMT is why Maggie is still with us today.  Shawn and I are confident, that if God hadn't led us in that direction, we probably wouldn't have celebrated last Christmas with Maggie.  We would trade all the other services available (because Mom will be doing most everything anyway) to have IMT covered!!  Our new therapists were great.  They both have MANY years of experience and were a satelitte location for the headquarters for a while.  So highly skilled, and Momma has seen enough in this field, that I can tell, they'll be a great fit for Maggie.  There are still a few more IMT therapists in the area that we plan to check out, and we may end up bouncing around a bit for a while.  The beauty of this therapy is that varying hands could pick up other things and though there is benefit to an ongoing relationship, each treatment can stand alone.
So, I have mentioned how they can "test" things on Maggie.  All the food Maggie eats has been "tested" and proves to be good for her body.  This testing is similar to muscle testing, but really is motility testing, feeling if systems pick up or are bogged down when introduced to something.  So...I have been hesitant to test the CBD on her.  In my mind, I have dealt with the predicament of what if it doesn't test well on her.  I would rather not know, because we should really not subject her to it if it doesn't test well (I think of it like being conscious of our sin.  If you don't know the law, how can you be expected to live by it, but once you know the law, you are accountable to it).  So once I know something doesn't test well, it is foolish for us to keep giving it to her.  But, if it doesn't test well, then it's crazy what we just did to get out here and would I just stop the CBD...yadda yadda yadda!   On the flip side of that, I was rather anxious to know which systems and how it actually was benefiting her, as well as test the other drug interactions.  Well, based on the already positives we had been seeing, we decided to test it and....the therapist was shocked at how well it opened up and organized some of her brain motilities!!!  Woot woot!  Also, while checking the other meds, it was clear which one was restricting the cannabis's full potential the most and overtaxing the liver, which was no surprise to us based on what we know about CBD and this drug both being processed through a particular liver enzyme.  I always figure it's kind of a crap shoot on the neurology end trying to decide which drug to wean first, but I really feel, as parents, using all the tools in our tool chest, we are able to really be the ones in the driver seat and work with the various practioner's to make our recommendations for her treatment and thus weans!!  Hopefully our new neurologist is as great as our last one with trusting our instinct and listening to our suggestions.
At any rate, I am thrilled to know the positive impact the CBD has on her overall, on top of what we are already seeing!  I know this is hard for many to wrap your mind around, but we know the effectiveness of this therapy and trust the hands that work with her, with no reservations!  I often debate how much to share about what therapy hands "pick up" in a sense, but between the things we already know from the Western med side and is confirmed through the feeling of motilities is always so exciting to me!!!  Like I've said before, now I am even more confident that the CBD, in combination with her manual therapy and Family Hope Center program are going to be her trifecta!!  (That just means we've got to get the program up and going again...come on Momma!). Also, I think knowing we are on the right track with the cannabis might actually help me slow the process down even more.  We are so anxious to see the immediate results, but, allowing her body to appropriately detox and not push things too fast, may be the overall best for her little body!

On the job front, we still won't have everything lined up for me to take the CNA training for a little while, so we both have been searching for anything we can.  Shawn's a little discouraged, because he has walked in and applied to multiple places and I only applied for one and have something secured.  Granted it's a seasonal position and a little kooky, but it's a little something to gain some income.  For the holiday season, I'll be an elf, basically a Santa helper for events and meet and greets through the holiday season.  Kinda fits my past well, entertaining and interacting with kiddos while they await their special time.  I'm sure me walking out of the house every day will be rather entertaining too.  I should know more after an orientation on Sunday.  In the meantime, please join us in praying for a great position for Shawn.  Right now he just needs something, even if his is just through the holiday season as well.  Eventually though, he will need something more flexible with school.  The real trick is knowing how we need to balance out taking care of the Magsters when neither of us has any sort of schedule at this point.  I'm sure it will all come together.  And it's a brief season until we really get situated.

What most are probably reading for is to know Maggie's progress with the CBD is going.  As I have mentioned, her awake seems more awake and she seems to be sleeping more soundly.  She was more vocal at the start and overall more active.  I think the past couple of days we have been dealing with her toxic load and need to keep all these things in balance as we continue to move forward.  Another big excitement is that her poopies have kept moving quite well.  In the past week, since starting cannabis, she has only had 2 days without poopers!  That's great for us!!  Just before starting cannabis, she had 5 days of constipation.
And, she does seem to have the munchies, which is great, since she has been having trouble getting over the 17 lb. mark.  All in all, good stuff!!
And, just tonight, we saw a slight glimpse of a smile.  She just seems more content in her body.  I have a feeling the smile will be coming back for good in a while!!  Until then, we will continue to be patient!

2 comments:

  1. Praise the LORD for HIS mercies are new every morning!! You guys are truly walking a life of trust and faith in our Heavenly Father!! How exciting to know that HE has all 3 of you in the palm of HIS hand! Everything is for HIS honor and glory!! People are watching how you walk and not always listening to your talk. Pointing people to CHRIST is such an honor and blessing! Thank you Rachael for the wonderful update! Please give Maggie and kiss from me!! BTW, you'll make a great elf! ;) Continuing prayers going up!! Karen

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  2. God bless you all.

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