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.


The Family Hope Center

So...this post has been a long time in the making.  And, I just lost the last half of it.  So, if it seems a little condense and there are errors it's because I just want to get it posted!

The first day we were worn out as I had to share everything I know about little Miss.  The clinicians checked Mags out to figure out where she was neuro developmentally, checking various reflexes, visual, auditory, tactile, and olfactory responses.  We met with the medical director to discuss all her medical history.  After reading her MRI results from last October, Dr. Baker's comment was, "well, that just creates more questions, doesn't it?"  When we met with the nutritionist, we gave her a run for her money.  The general parameters she usually gives families are already things we are eliminating.  She was able to give us a couple of more trials to attempt.  Eliminate fructose, a lot of fruits, etc.  After 6 weeks, if that doesn't make a noticeable difference in digestion, then we try eliminating nightshades (potato, tomato, eggplant, etc) for 6 weeks.  If those don't work, she says she has other things we can try (or more so eliminate).  Basically we are trying some of the less obvious food intolerances.
Maggie also received a CranialSacral/Myofascial release treatment on this first day.  Dr. Barry has coupled the two together and has been in this line of work for decades.  He checked the brain cycle (full expansion/contraction) of the brain and also the overall fascial tensions in her body.  He said he has never seen a zero cycle without having tension throughout the fascia.  No tensions is complements of all our IMT work...yippee!  His treatment definitely was more aggressive than that of other CST I am familiar with.  She would fuss a bit, but then calm right down.  It made me think of those good hurts Shawn or I get when we are being worked on by Grandma Carla.  Not knowing how to express that, fussin was a way to let me know.  When Dr. Barry was finished, he said she was up to a 60 second cycle (30 expanding/30 contracting).  That's good for getting her brain breathing.
Mystery Maggie managed to perplex a few of the clinicians throughout the day with all the inconsistencies.  Silly little girl!
On the second day they provided us with Maggie's program and went through all the components with me.  The order of priority is Oxygen Therapy, Nutrition, Visual Learning and Emotional, Sensory Learning, Movement and Mobility.  I'll try to explain a bit about each.
OXYGEN-The primary goal is to get oxygen to her brain.  We need to get her brain breathing!  Maggie and I had the opportunity to try a mild hyperbaric chamber.  I was quite surprised at the noticeable impact.  She did fabulous in it.  If anything Momma was a little unsure exactly what to expect.  I have known that it takes quite a few "dives" for results.  However I noticed a few distinct tidbits.  Afterwards, Maggie appeared to be much more alert, and I'm not positive (the inconsistencies are hard to track), but I am fairly certain she didn't have nearly as many spasms that night.  As for me, I had much more energy that evening, and the next morning, I woke up bright eyed, ready for the day.  I was shocked that I was able to notice differences in both of us.  I have considered the idea of the placebo effect, but I'm quite certain these were direct results.  At any rate, we are in the market to get one for ourselves.  Her program recommends 2 hours every day.  I figure we can go in for an afternoon nap together!  We will also start carbogen therapy to try to get more oxygen to her brain.

NUTRITION-As I mentioned, we have a couple of elimination diet trials to implement in search of the major intolerances.  We are also starting Epsom salt baths daily.  I have been researching Magnesium deficiencies recently.  (very impressive and affects 1 in 3 people)  The baths are actually serving many purposes.  Absorption of magnesium to aid in detoxing, skin to skin contact time for Momma and the Magsters, and opportunities for hydrotherapy (all other parts of her program).  We have also switched to an infant specific probiotic, cod liver oil for our omegas, and starting a Vit B/Magnesium Phosphate supplement.

VISUAL LEARNING and EMOTIONAL DEVELOPMENT-  To start, 40 times per day I need to stimulate her pupil reflex.  This takes going into the closet flashing a bright light into her eyes 1 sec on/5 sec off for one minute.  Then I use a bright colorful light to try to get her to focus and track (10 times/day).  I also show her sets of black and white and a few bright colored simple pictures for her to start to to distinguish the outlines and details. (15 times/day)  The final component of this is the face gazing.  For 5 minutes each day, with both Shawn and I we just sit face to face with her for her to connect with us and study our faces.  As she is ready, we can start with more fun faces and creating more of a game out of it.

SENSORY STIMULATION-This includes the auditory, making a loud fearful noise 3 times a day until she is consistently jumping or in fear.  Also with the auditory is just providing her with various sounds 10 times per day to try to get her to notice and recognize the sounds.  To create sensation for her oral motor, I have to massage/brush inside and outside her mouth before and after she eats.  And for olfactory, she will smell nine different scents throughout the day.  When she smelled one of the spices while we were in the office, she started to chomp her mouth.  This is a good thing, as the olfactory and gustatory should be integrated!!  The baby massage and skin to skin fit into this part of the program to enhance her tactile senses.

MOVEMENT and MOBILITY-There are a few components to this.  First, we have a map of 10 point QRI reflexes to massage twice a day.  We also will be starting hydrotherapy.  The trick here is having water at just the right temperature.  Ideally, 94* is the best so she is not wasting energy trying to stay warm enough.  We also need to start enhancing her balance development.  To do this, we put her on a blanket and move her around every which direction.  And finally, we will begin to implement a coordination program to help her brain learn what it feels like to move appropriately together.  (This is where we will need some extra hands)

As you can see we will be BUSY BUSY BUSY!  My natural instinct would be to spend all my time trying to figure out how to make our schedule perfect and how to implement everything just perfectly and never actually get started.  However, we just need to get started and gradually work towards that perfection.  And so it begins...

Maggie and I made some great friends while we were in PA.  We got to know Deuce's Daddy and Gigi fairly well when we first went to the conference.  It was fun to meet Deuce and his mommy this trip.  It was so neat to see because they both were definitely aware or one another and appeared to be connecting with each other.

Eli was super sweet and Mommy really enjoyed getting to know his family.  He loves DisneyWorld and has dreams of becoming and imagineer.  Mommy requested a special drawing for Maggie.  He was thrilled to draw her a bear and even sign it to Maggie from Eli!  He was a true gem.  As a family they have a tremendous testimony and have traveled the country sharing their story.  Eli was born well, but fell from 2 stories at 3 years old, landing on his head.  For many weeks, they were unsure if he would even survived.  It was a delight interacting with him!

Nicholas was Mommy's little buddy.  His parents said he usually doesn't love on people much, but the last night at the hotel he came over and gave me a big hug.  Then he was holding Maggie's hand.  Again, Maggie seemed to be very attentive to him and completely aware of his presence.  So so sweet!

Mommy didn't get pictures with all our other friends, but we had a great time getting to know all the families at the center while we were there.  Mommy even raced Max down the hallway creeping.  Low and behold, Max was faster!  We can't wait to see all the strides these kiddos will make.

1 comment:

  1. Still keeping up with your sweet girl, whom I've never met! Thanks for taking the time and energy to let us know how things are going. You are an amazing mother and she is one little blessed girl to have you and her daddy. You all remain in my prayers. Mary Ellen Honeycutt