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.

RAGBRAI-every mile

For those of you that may not know, RAGBRAI stands for Register's Great Bicycle Ride Across Iowa.  It's an annual ride from the Missouri River across the state of Iowa to the Mississippi River.  When looking at the route mileage this year, the thought crossed my mind, if any year, this could be a good year to try to ride every mile again.  The last time I rode every mile was my very first year, 15 years ago.  Any given year, I may have to miss a couple of days here or there for other commitments, or we may just be 20 miles shy because we got off early for any number of reasons (hills, headwinds, mechanical trouble, heat, accident, etc...the reasons are endless--especially with our crew).  At the beginning of the week, I mentioned the aspiration to try for every mile, knowing, the big hurdle would be the 83 mile day on Monday.  Grandpa Kevin thought I was crazy.  I wasn't holding my breath, but, I figured if we could make it through Monday, there was a strong possibility we could aim to complete all the rest of the days that were just around 50 miles each.
So...Amelia (Shawn's niece) and I mounted up on the old blue tandem.  We like to call it vintage.  Within the first 5 miles, I was beginning to question my capabilities.  I've had this happen before.  I knew I was not in the best of shape, but we just felt we were not that efficient.  Now, if I had trained much, I would have for sure known whether it was me, or the bike, or my stoker but I could not confidently say it was any of the above.  We wheeled up to a bike shop in the first town, and low and behold, our front brake had been rubbing.  Talk about a little extra effort being exerted for Amelia and me.  From there we started rolling quite well.  Throughout the week we did have to tinker with the vintage baby quite a bit though.  Chain coming off, derailer needing tweeked because it would rub on chain or on the pedal, rear brake having to be manually released every so often.

Regardless, we kept pedaling away.  And, of course, refueling...eating all the way across the state.  With the limited diet I am on, I was slightly concerned about being able to consume enough to keep me going strong AND providing the right nutrients for the Magsters.  However, meat and veggies were readily available and overall, I didn't seem to have much trouble at all.  I was pleasantly surprised!  Of course, breakfast burritos bowls were a must have every morning!

Throughout the week, to help raise funds for "Working in Tandem"  (Both Uncle Steve's "Get Steve Moooving" and "Miracle for Maggie"), we sold raffle tickets for a RAGBRAI quilt.  (If anyone would still like to buy tickets, let us know)  With the mention of a GOAL to do every mile, Uncle Steve had called KWWL, the local TV station, to inform them of our story and proclaim that Maggie's mom WAS doing every mile. Not so sure how I would be concise with explaining everything, I was relieved they never tracked me down to interview me.  However, I felt I had to do every mile, just in case!  And really, there wasn't much consideration of doing anything else.  Thursday afternoon/evening, after a day of hills and some headwind, I was about in tears from my right knee.  I was a little unsure of the next 2 days, but luckily Grandma Carla came to my rescue and I was careful to nurse it along the next couple of days.  I came to realize the knee trouble was actually probably coming from my seat being so uncomfortable.  Never have I gone all week with my butt in pain.  (it usually goes numb after the 2nd day.)  If only Amelia and I would have known that our butts would never going numb, we would have traded the seats out earlier in the week.  Oh well, lesson learned.  We kept going.  Finally Friday was a sweet treat with tailwind and smooth sailing.  Then on Saturday, about halfway through the day, we were once again a little unsure of the vintage bike.  After the pedal caught the derailer, bent it some more, and caused us to lose our chain, Dad was able to help get us back in action.  Where the chain was placed, nothing was rubbing, which is quite the feat with the limited clearance between rubbing one way or the other.  Amelia and I made the decision that we wanted to make it to the river, so we decided, if at all possible for those last 20 some miles, we would just crank it harder up the hills, and hopefully not have to change gears at all.  So, we got our momentum down the hills and kept sailing to get up the hills.  The gear we were in was about 12-17 mph of comfortable pedaling, which served us quite well on the terrain for the rest of that day.  My knee held out fine too.  Still unsure that the bike would make it, I had visions of the tires both going either direction and all the components just flying off.  We started discussing how many miles out could we be before we would just run to the river to accomplish every mile as we wanted.  Finally we got to the 2 miles out and knew it was straight down hill to the river, so we knew we could just coast the rest of the way if something happened.  We were going to make it!  And, we did.  We got down to the river, took all the dipping tires pictures, and then...dum dum dum...We went to get back on the bikes to find Shawn and the bus, and the chain between the front and back pedals split in half and broke right there!  412 miles all the way across the state, and it waited to fall apart until just after we made it. As Joy was quick to point out...that's a God thing!  Crazy!
It was 15 years ago that I rode every single mile.  That was the last time I had done that.  It was also the last time my bottom was on the same seat all the way across the state.  At 30, Amelia was 15, and the two of us made every single mile together on the tandem.  Unfortunately, in 15 years, when I am 45, Amelia is 30, Maggie would be 16 and I am not so sure I'll be able to captain a triplet across the state!  Grandpa Kevin, our great friend Joy, and Uncle Tyler's good friend Brent also did every single mile with us!  Impressive for our group!

Support crew sleeping in!

The entire week was quite smooth.  Shawn and Cousin Quin managed to be an excellent support crew for us bikers, while keeping track of Maggie and her needs.  Earlier this summer, I had debated whether or not it was worth us going on RAGBRAI this year.  With all we've been doing, I thought it was selfish of Mommy to try to add one more big thing to the mix, but again this week, I realized why the dynamics are so beneficial for our family.  I have spent all year supporting and caring for Maggie and her every need.  This was Momma's week of vacation, kind of.  It's a week for me to let go of intently tracking the details of everything she does.  Also, the situation cannot otherwise be replicated.  Daddy and Maggie have their time to figure out one another's rhythms and dynamics, but Mommy is still accessible and around.  I get to be more hands off, and Daddy gets to be the primary provider.  For Daddy, he wasn't completely being abandoned though. I would still try to feed her a portion of her meals when I was around (everyone claims she eats so much better for Momma) and of course, we would still have snuggle time for nursing in the morning, at the midday stop, and in the evening (or middle of the night)  So, by no means was Momma not still actively caring for the Magster, but I wasn't around to micro-manage Dad's care.  They were somewhat forced to figure each other out a little more.  Last year after RAGBRAI, I had noticed that Daddy was much more confident caring for her and anticipating her needs.  I presume the same will be true this year.  The other fun part, is that all 3 of us get to just hang with Momma's family as well as those sweet cousins on Daddy's side and of course Joy.  The relaxed atmosphere allows Maggie to build stronger relationships with all these important people.  The benefit I didn't quite think through is that all the exercise provides a great cleanse for Mommy's body, and is motivating to make this a priority in the busy schedule that we will soon be implementing.  Many times throughout the week, I reminded Maggie to enjoy her last week of chaos, because the new therapy regiment will soon be implemented!

Daddy being Daddy because Mags was fussin'

Happy Anniversary to us!

Five years ago, I stood next to my future hubby with tears running down my cheek.  Most would have assumed they were solely tears of joy, but all along, I knew they were something different.

The passage we chose for the message was Matthew 7:24-25, which says "Everyone then who hears these words of mine and does them will be like a wise man who built his house on the rock. And the rain fell, and the floods came, and the winds blew and beat on that house, but it did not fall, because it had been founded on the rock."  Now that of course had a valid meaning since our original wedding location was flooded out 3 weeks prior to the wedding, but that wasn't what the tears were for either.

There was a momma off to the left that my gaze would lock onto.  This mom was a parent of one of my students.  Just 2 months prior, this momma had to bury her 18 month little girl that died from a freak accident in their driveway.  As my eyes caught this mother, I was reminded of the reality that we didn't have a clue what was ahead of us as we entered this blissful marriage.  The thought of our marriage in Christ being a firm foundation for our future family, a foundation that quite possibly would endure storms of various intensity. It was this that brought tears to my eyes, the fearful anticipation of what storms our marriage may have to endure.

Little did I know that the reality would indeed be intense storms.  That there would be no way either of us could survive the past few years without the other and our firm foundation.  Truly, this foundation is all we have to cling to.  This foundation is the source of love, encouragement, strength, and refuge.

Our wedding verse, "Rejoice in hope, be patient in tribulation, be constant in prayer," (Romans 12:12) is the testimony of our last year in particular.  As I reflect, there is no better verse to speak to our hearts at the present!

I couldn't imagine walking this journey with anyone else!  As I told a friend tonight, our marriage is so much greater than a one day anniversary, and as I lay here in a random hotel 8 states away from my hubby, I know that with much prayer and commitment, our love will only grow stronger and stronger.

Feel free to always pray for our marriage though.   The statistics for special needs parents' divorce rate is staggering.  If in doubt of what to pray for with special needs families...strength for mommies and daddies relationships with each other and the Lord to serve as a firm foundation for the family.

To many more years....