We're jumping off the deep end!

Now, where do I begin?!

Lots of BIG changes in store for the Selmeskis.  A couple of months ago, Shawn shared with our small group that he feels like we are a sailboat out in the middle of the sea.  He described it as having our sail up but no rudder to determine the course, just have to rely on God to blow us in the direction He wants.  The following week, our church had used a quote for something else.  I think it resonated so loudly with our personal situation.  "Ships are safe in the harbor, but ships are not made for the harbor."  So true for all of us!

Right now our ship is headed to Colorado. Literally right now, as I type we are just arriving but also permanently (if that means anything when following God) in a couple of months.  This week we are getting all our ducks in a row.

So, what are those ducks?!?!

There is no way I'll be able to include all the little things that confirm this move, but I'll do my best.

As some of you have tuned in, we had been exploring the option of medical marijuana for Maggie for the past few months now.  It was back at the beginning of May that we both were really intrigued and started considering MMJ as an extremely viable option for our sweet little girl.  This is the original video we saw:

http://www.washingtonpost.com/posttv/video/thefold/medical-marijuana-renews-hope-for-children-suffering-from-seizures/2013/04/24/4eb5419e-acdb-11e2-a8b9-2a63d75b5459_video.html

You can also search 'Realm of Caring' on YouTube.  With the recent airing of the WEED documentary on CNN, it prompted us to begin seriously considering this.  We were planning on giving the FHC program a few months so we could evaluate that by itself, until I tuned into a conference call a week and a half ago.  On that call, I learned more about the grow cycles.  Harvest takes place 2 times a year, in October and March.  As it sat at that time, there were 97 kiddos on the wait list (one being Maggie).  The Realm anticipates they will be able to take about 50 kids off the wait list with the October harvest.  As long as we establish residency by October, then Maggie's specific plant count will get planted so her specific plants will be ready at the March harvest.  If we waited, her plant count wouldn't get in until March and then not be ready until next October's harvest.  We weren't wanting to wait that long.

Something I have come to realize from hearing the other successes and chatting with other parents.  I have become complacent with all the spasms.  We just let them run their course and don't get too concerned about them.  Heck, it just looks like a startle reflex and doesn't seem to phase any of us much.  However, they are generalized seizures every time, wasting lots of energy, and damaging her developing brain.  One day this week we started counting with a clicker to see how many seizures she actually has in a day.  We were blown away...over 500 in one day.  If you would have asked us, we both agreed we probably would have told you somewhere around 50. Guess our estimation skills are not that great.  I would say about half of hers were the infantile spasms and the other half were what I believe to be myoclonic jerks.  The success that these other families (also with children with very difficult to manage seizures) are seeing provides a new hope that we could get them to stop (or at least decrease the frequency).  Not to mention, that by using the cannabis oil instead of pharmaceuticals, the detrimental side effects could nearly disappear.

We are aiming for a trifecta.  Colorado has some wonderful IMT therapists so we will be able to continue the body work to restore soft tissue motility. (Though it's going to be extremely difficult to say goodbye to Piotr and the staff in Knoxville.  They have been a tremendously intregal part of Maggie's stability.  We LOVE all of them!). But it's great to know we will have options of new therapists to work with Maggie.

We also plan on continuing with her program.  Though it may be crazy the next couple of months, we know that it is also a key piece in getting her brain organized and promoting developmental progress.

And finally, the MMJ provides hope that the seizures will become more controlled, without destroying her body!

But that's not all...Shawn is applying to Denver Seminary and will be starting classes in January for Worship.  Wow!  It may seem way out of the blue to many, but God's been laying the groundwork for a while. Two years ago while at the Christmas Eve services at Prairie Lakes, the Spirit overtook Shawn and revived his passion to be in ministry and deepen his theological knowledge.  At that time we talked some about seminary.  My personal preference was Denver Seminary, based on the handful of quality pastors we know that God is using effectively in His service now.  I was pregnant with Maggie at the time.  We never really acted on the prompting, and then Maggie was born, and then, well..ya know, life got a little crazy.

Over the past couple of years, Shawn has initiated and pursued various worship leader positions.  However, for one reason or another, they have not panned out.  I know, as well as most everyone that attended Heartland knows that Shawn's skills and talents allow God to use him in great ways.  He has been more than qualified for many of the positions.  Most recently this summer, Shawn had a few fairly promising leads on positions.  There was one in particular in which they sought him out to apply for the position.  After waiting for nearly a month after the interview, Shawn recieved a call the Monday after the airing of the CNN documentary.  They decided to go another route.  This was dissappointing and heartbreaking, BUT there is no doubt that this no was a "I have something different in store for you.". Like Shawn has said, we've had our sail up and have been waiting to see where the Lord takes us.  I hope you didn't miss that after a month of waiting, we recieved a shut door, the DAY AFTER our continued exploration of cannabis had been sparked.  Before Shawn even got home that night, he had contacted Denver Seminary to get more information.  It was confirmed just like that in both our minds.  Logistically we've talked through lots of details, but there really wasn't much conversation about whether or not we should go.  God provided a confidence in both of our hearts to know this is the next step for our family.  Knowing the background and watching the documentary the night before, my dad, without any reservation, summed it up pretty well..."looks like Denver Seminary and living on love and weed!"

Logistically, there are a couple of neat things to share with how God is making this possible.  In the state of Colorado, Maggie will qualify for nursing hours which could be provided by a home healthcare company.  The cool thing is that the said home healthcare company can hire me, the parent, to go through CNA training and then pay me to provide the services, basically everything I already do.  I wil be an employee, have to attend meetings, log care, etc., but I'll be bringing in an income to help support us.

Also, we have found 4-5 churches looking for a part-time worship leader.  We will be meeting up with a couple of the pastors this week.

In other news, we had to drop a urine sample off at Vandy on the way yesterday.  They also drew blood from Shawn and I, as genetics wants to look further into a possible gene expression on Maggie that is of undetermined significance.  Hmm..  Don't know anything about that really, except Mommy and Daddy had to get poked and Maggie got out free!

Also, we were thrilled to find out that our neurologist is in support of the MMJ as a next step for Maggie.  It's wonderful when her team is on the same page as us!

So, this is going to be a busy week.  Lots of appointments and scoping everything out.  We could take all the prayers we can get to have everything line up.  The housing is of particular concern to get figured out this trip.

Luckily we got here in time to meet up with other Realm families.  What a blessing to already have such a tremendous network of truly 'special' families!

Crazy?!? Yeah, we know!

Medical Marijuana for Maggie?!? tune into CNN at 8pm or 11pm (EST) tonight!

Last summer, just about this time, I came across information stating that Cannabis could be beneficial for treating seizures.  When I brought it up to Shawn, he's response was "no way...we are not giving our daughter weed."  This just goes to show my naivety, as I didn't even know cannabis was marijuana.

If you ask us now, I am very well versed in weed lingo and we both view it as a viable option for Maggie.  We are giving our current program 6 months of full effort to see what improvements we see along the lines of better seizure control.  Then, pursuing cannabis may very likely be our next step.  However, there are some major hurdles to overcome to obtain access.  I have been researching and staying in the loop regarding pediatric use of cannabis for a few months now.  As we continue to subject Maggie to a cocktail of pharmaceuticals, still without providing complete seizure control, this is not something we take lightly.  We are in search of the best option to allow Maggie to develop to her full potential, while best honoring her body.  Please know that this is my general interpretation of the information I have come across.  I think it's worth piggybacking the recent press attention. I encourage everyone to do their own research and become knowledgeable on this topic.

In the past couple of years there has been some amazing pioneers in the seizure world that have come to see tremendous results with the use of cannabis for children that have not responded to traditional anti-convulsants.  Now, to clear the air, it is not smoked.  We would not be smoking to get Maggie "high".  It is made into an oil that can be given with food, not uncommon to any of the meds or supplements we are already giving her.  Also, in this case, it is specifically grown with extremely low THC (the psychoactive part that gets people "high")  and high levels of CBD.  Granted, long term side effects have not been thoroughly studied. The children that have not responded to seizure meds that have started MMJ (medical marijuana) have taken off and soared developmentally.   I have yet to hear a family mention negative side effects from the high ratio CBD.  Given the lengthy list of side effects for Maggie's meds and the recreational use of marijuana for years, we'd be willing to take our chances of the unknown.  (Willie Nelson's been using it for over 50 years and we would be ecstatic if Maggie even made it to his age, let alone be functioning as well as he does.)  While, yes, I do believe Maggie's seizures contribute to her delays, without a doubt, I am confident the meds play a much greater role in her lagging development.  Marijuana is a natural, God created substance, not synthetic, which of course is more appealing to me.  Don't get me wrong here, that doesn't mean I support the misuse and abuse of anyone's  body for recreational use.  It is worth pointing out that the past 4 presidents, including Barack Obama have admitted to using marijuana.  For those naysayers out there, here's the kicker, there has not been a single reported death by overdose (let alone use) of marijuana. Not even tylenol can claim that.  Interesting, eh?

Now for the tricky part, and why I feel the general public needs to be more educated on this.  Obviously, I have vested interested into delving into this, but the general public doesn't.  However there are huge legal barriers that make it difficult for those that could benefit from MMJ from obtaining it.  Marijuana is considered a Schedule 1 drug, which means it is most addicting and dangerous.  Why it has that classification, I'm still unsure.  However, federally, it is illegal.  And to make matters worse, because of this classification, the research necessary cannot be done.  So, the research to prove it is safe and effective can't be done because it is a Schedule 1 substance.  Hmm... So, how do people currently access it?  Certain states have become compassionate states and approved the use of MMJ.  Most of these states requires 2 doctors to sign off on it and some still don't allow use for minors.  Since the states are the ones to enforce the laws, it's kind of like determining they will somewhat turn a blind eye as long as the individuals have their MMJ card and are not in possession of more that what the state deems as legal.  Even still, the federal government can seek out dispensaries to shut them down, which limits access.  Wow!  So, in a legal state, growing your own can often be a valid option.  (Given my failed garden this year, I think we would need to hire a grower). In Colorado particularly, there is a group of brothers that grow as a charity to provide this specific low THC, high CBD strain known as Charlotte's Web.  Due to all the recent PR, the waiting lists for places like this are growing.  Not committed to it yet, we did request to be put on the waiting list.  If we decide down the road, that this is our next step, we wouldn't want to have to wait for years for it to be available.

Because there is so much legalities involved and we are in a democratic society, I strongly urge you to watch Dr. Sanjay Gupta's program on CNN tonight to begin educating yourselves on the topic.  I have been fascinated by the misconceptions I have had.  The program is on at 8pm and 11pm EST.  From there, Maggie may be requesting your petitioning to state officials.  Unfornately neither Tennessee or Iowa allow for the use of MMJ at this time.

First Day of School

We started our program today.  The first day went quite well.  It was just like the first day of school as a teacher...make it to the first special (in our case it was morning nap), then tweak and refine the processes to work out the snags.  She was ready for morning nap and Momma stayed busy refining a few things.
She did great today.  The biggest thing with the program is that Mommy has to slow down enough to pick up on Maggie's subtleties that show she really is engaged and processing.  She proved to me today that she is processing information and capable of engaging with the activities.  Her breathing definitely changed with the visual stuff, and she would fatigue from that.  The smells woke her up, and I have to be very careful she doesn't check out and shut down with the auditory stimulation.  Overall, I think she was more alert throughout the day too.  I think up until now she often checks out because nothing is meeting her at her level to stimulate the brain.  Today we were at her level and she was able to attend to it.
As for Momma, I felt way more productive than I have in a while.  I keep telling Shawn, "an object in motion remains in motion, an object at rest stays at rest"  Having a full-time "job" will be good for me to get other things done around the house too.  I know seems a little weird, but then again, we all know that I am a little out of the ordinary!
It'll be interesting trying to work out the best schedule.  She'll probably be more hungry throughout our program days.  We had lunch a little earlier than we have been and she fell back asleep halfway through it.  Oh well!  She must have needed it!  We probably squeezed in about 1/2-2/3 of our program.  It'll be amazing if there ever is a day that we accomplish the entire program.  That's my goal though!

Momma is proud of our accomplishments for the first day!

It's gotta be a God thing!

Ok...I know many don't like to talk about money, but I think it would be negligent to not tell you this amazing God story.  I'll have to provide a little bit of background to emphasize just how amazing God is.  He proves Himself and how he provides for us over and over again. (Particularly in the finances).

As poor as Mom and Dad are, Maggie has LOTS of friends and family that are supporting her.  It is amazing to me all the little and big donations that come in for Maggie's care.  Leading up to the summer, a couple of big fundraisers (at the campground and the bike ride), as well as other random donations set us up well for the adventures of therapy this summer.  Unfortunately in between the acquiring and spending, I had finally finished the grueling SSI application and submitted it.  Because Maggie's nest egg was sitting there, we were told we aren't poor enough to be eligible for SSI.  So, because we have generous friends and family, how does that compare with the fact that my daughter has a severe disability, that can be costly all around?!? (I'm pretty sure there are plenty of people on disability-because they are left handed, or something stupid like that-milking the system...we could actually use the money for providing her with the best possible care.)   Needless to say, I was quite disenchanted with the entire system.  We are poor enough to be stressed, but not poor enough.

At any rate...didn't mean to get off on that tangent.  I have a different point to my story.  Since all our big spending in PA and CT, and some more donations, I haven't had the chance to update and know where Maggie's finances sit.  But, we are in need of a hyperbaric chamber. Last week I tried to get started with some of the components of her program, but have really felt this oxygen to her brain piece is a major priority.  Vision requires a lot of oxygen and it seems she fatigues quickly.  Trying to implement the program without getting her brain to breath is like hitting our head against the wall.  I was a little discouraged when I found out the ideal chamber that I would be comfortable with us using was much more than I had anticipated.  I thought we were in the range of $7,000-8,000 but to actually meet our needs (one of us going in with her and a reputable manufacturer, etc.) we are looking at the $17,000 model.  Wow wee!!  Not what I expected.  Again, slightly discouraged that we won't be able to meet Maggie's needs for a while.

A point of clarification here. As much as we want to provide everything possible and try anything we can for Maggie, we are committed to be good stewards and following the Dave Ramsey principles we have acquired along the way.  Finances are a big enough issue, particularly for special needs families, that us going majorly into debt to try everything under the sun, would not be the least bit healthy for our family.  We have seen God provide perfectly and we are confident his provisions will continue.  As the funding comes in, we are able to explore the various avenues of treatment, that have proven beneficial up till this point.

Knowing I want to start the program and get moving with it, we considered checking into the medical financing program they have available.  But, then we would be strapped down by the debt.  Hmm??... Decisions, decisions!  We've thought about going ahead and getting it in hopes we could raise the funds this fall, or waiting to get it until after having a couple of big events this fall.  The struggle we have is that we don't want her to be falling any further behind.

I spoke back and forth with the lady at Newtowne Hyperbarics multiple times this week.  She was wonderful and even gave me some pointers if we ended up finding one second hand.  So, I had posted on the Family Hope Center Facebook page about being in the market for a chamber..any family looking to get rid of one?
Now, this is where is gets good.  Kay, a mother of a child with Infantile Spasms that I originally spoke with about FHC said she would check with a friend that may be interested in selling theirs.  Kay told me she doesn't get on FB that often, so the chance she saw my post was impressive.  But, it get's better.  She contacted her friends in Colorado.  They had listed the chamber a few months ago but it hadn't sold.  And just the night before Kirk had a feeling he needed to relist it on Craigslist.   So, Kay provided me with the link to their listing.  When I checked it out, it was the brand we were looking for.  I called up to the gal I had been speaking with at Newtowne Hyperbarics and she verified the version and serial number and reassured me that it should be able to meet our needs.  She even was willing to send a manual our way for it.  The family only used it about 50 hours and had it listed for $10,500 plus shipping, which was $400 for them.  So...remember that number....$10,900.  When I saw the price I thought "wow...that could save us quite a bit. But...that would mean we have to have cash in hand.  Hmm."  I set out to figure out just how much money Maggie had.  We've kept a fair amount of cash available.  Plus, I had checks that still needed to be deposited.  I checked the account online and tallied everything up.  Crazy, but we had $49 in ones.  I rounded that up to $50, but later came across 4 quarters in one of the envelopes.  So, when it was all tallied up...drumroll please.....exactly $10,900!  When I added it up and arrived at that number, I knew God was saying loud and clear, "have no worries.  I have your family in the palm of my hand, and your little girl will get what she needs!"  Absolutely AMAZING!!!

So, we are working out the details of getting the chamber and should be able to implement that aspect of the program in the very near future.  Also, now we will be poor enough to re-apply for SSI.

Can you find the error?!?!

AMENDMENT:  Over the weekend I had typed this entire blogpost up.  I thought it would be fun to include the picture that showed my excitement, but I figured I better check my math before I posted it online for others to critique.  And, low and behold, I had messed up!  Yep...didn't need to carry a 1 in the thousands column.  Therefore, in reality, Maggie only has $9,900.  Man, what a bummer, and what a farce.  I had just read Shawn the blogpost (and even cried reading it to him)  and then showed him the note paper.  Shawn and I couldn't stop laughing at the stupidity of it.  I debated deleting this entire post, but I think it is still a tremendous opportunity to show how God is caring for us.  Some may say that my miscalculations completely null and void anything I had said about God's provisions and faithfulness, but I think it shows His divinity even more.  I wouldn't say I am infallible in math computations, but usually I'm fairly decent in the math department.  For me to make this foolish error and the sum to have arrived at the $10,900, there is no doubt in my mind God knew I needed to hear His truths.  That if I arrived at the $9,900, His truth would not have been such a glaring, "I'm taking care of you!"  At $10,900, it was "I'M TAKING CARE OF YOU", yelled loud and clear in my face.  At $9,900, we talked and will easily be able to move our funds around and still make it happen, without too much of a hitch.  We already know we have some additional funds coming our way soon too.  This just makes for a few extra chuckles in the process!  Go ahead and laugh at me....we did!

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....

Day 3 and Home...

So, I have a feeling I'll be writing a few things every so often, as they pop into my head, but trying to summarize the fire hose of information we have received is good for my retention.  And maybe just a tidbit will help someone else.

Yesterday we all got to crawl and creep.  Just to clarify, I've had creeping and crawling backwards, as many do.  Now when I use the term crawling, I am referring to looking like a salamander, belly on the floor, legs and arms out.  We all got on the floor and crawled.  It was quite a sight.  How well we crawl is related to our neurological organization or disorganization.  Because Shawn has crawled through attics for work a lot, he did quite well.  It is amazing how much I had to think about it, but I still did decent.  Some people had LOTS of trouble.    Before you start laughing, get down and try it yourselves.  Not as easy as you think.  The point for having us do it is so we know what our child will be experiencing, and realize the level of effort and breathing that is involved.  This is a good thing.  A very important aspect of crawling is the Babinski reflex.  The digging into the ground and pushing off sends messages to the pons and is very important for neurological organization.  Shawn and I raced and he wanted to make sure I pointed out that he did beat me.

Now, before you all think Shawn is so much more neurologically organized than me, let me clarify that throughout the week, we kept a list of "injuries"/abnormalities we each have, and he had more issues than me!  We also kept a list of other people and the brain level association for the issues.  Just ask if you want to know whether or not you made the list.  Our dog, Kitt, did! Don't be surprised if Shawn or I ask you to get done and crawl either.

At any rate TUMMY TIME and CRAWLING (with the Babinski reflex) is of utmost importance.  Unfortunately kids do not have near the oportunities for doing that now.  Shawn is going to build an inclined plane for Maggie to practice practice practice all day long.  We will be working up to about 300 yards/day.  Crazy?!  I know.  The benefits of crawling are endless...digestion, coordination, neurological organization!

Another great program for Maggie is hydrotherapy.  This can help with movement and coordination as well, and it is a very similar environment to where she came from.  We have started to get the ball rolling with getting her swimming more often.

Oxygen was a big thing.  I have struggled for a while with trying to figure out how oxygen is tied into everything, but I have known that it is definitely involved.  We need to work to get her taking deeper breaths.  It deals with improving the dilation of the arteries.  Though we need to wait on some of the items until we go up for our 2 day appointment to get her assessed individually, it was clear that this is a BIG component to start improving.  Crawling and moving would help with this as well.  There are some other crazy exercises we learned that we will be excited to see the results from.  The oxygen issue makes complete sense with her spasms as well, as they typically occur when she is awakening and her breathing pattern changes.  Deeper, more full breathing is extremely beneficial for so many things and clarity of thinking. Another interesting thing is that the brain operates best at 67*.  Looks like Maggie and are going to have to dress a little warmer and turn the air on.  Not happy about this one.

The nutrition component is also very important.  This part was reassuring to me that we are mostly on the right track.  It was confirmed that avoiding gluten and casien is very beneficial, as they can both be difficult to digest.  A couple of new rules for meals should be good and easy tweaks to what we are already doing.  Fruits should not be mixed with animal protein.  They should mostly be served as snacks, and high sugar fruits should be avoided. Also, we can reduce her carbs and not serve them with animal protein either.  Trying to up proteins and good fats are great for neurogenesis (brain growth).  Adding good quality Himalayan sea salt is also very good for the brain.  And veggies, veggies, veggies!  I'm sure when we go to our appt, we will be able to get more individualized meal planning, but this will be close to a modified Ketogenic diet.

I'm not sure if I mentioned or not, but last week I had spoken with a dietician at Vanderbilt and the Keto diet is what our neurologist thought might be the next best step.  Shawn has had reservations about the full Keto diet, as we would be admitted for 3-4 days, and we would have to quit nursing.  After researching it, I can see the benefits of the Keto diet and have tried to implement a bit of it.  I think the changes are helping, and hopefully, we can make these tweaks and avoid taking the other extreme step.  I've known I've been missing the mark with which foods together, but haven't known which changes to make.  These few "rules" will be very helpful.  Along the lines of nutrition, there is a HUGE gut-neurological connection, with at least half of our neurotransmitters found in the intestinal track.  That is why if you are around us at all, you know that bowels is a normal conversation in our house and a good tool to assess our health.  As much as we indulge in food and consider it such a social event, it's kind of ironic that it is taboo to assess how it affects us!

The Family Hope Center is also very big on CranioSacral Myofascial Release.  I'm glad we are already ahead of the game with getting aspects of this addressed with our current therapy.

The idea of clean air, purified water, organized environment (ah!), and positive people surrounding Maggie were pointed out as very important.  Neurologically disorganized children need more structure.  It's no question that our surroundings help define us.  I've been chewing on these things for a while and have set the start of the school year as a goal to get us as structured as we can.  It might mean Shawn and I pull back on some things to maintain the structure.  (Now this will be difficult for both of us and our spontaneity). I'm sure we will still be traveling here and there, but we may have more disciplined structure to it.

I know...I know...many people think we are CRAZY and all of this seems kind of extreme.  But, extreme kids need extreme measures.  The brain needs intensity, duration, and frequency to grow.  Follow me a moment on this one, a hypERsensitive child requires LOW intensity, LOW duration, and HIGH frequency.  Whereas a hypOsensitive child needs HIGH intensity, HIGH duration, and LOW frequency.  At either rate, it will take a lot of time and exposure to get her brain responding appropriately.  Other interesting tidbits is that sensory improves sensory, motor improves motor.  Though sensory precedes motor, often times we think stimulating hearing (sensory) will help speech (motor). In their opinion crawling (motor) promotes speech. Yeah, try to wrap your mind around that one!

Yesterday we also worked more to identify what specific parts of the program Maggie will need to be stimulated by.  We learned some tips and suggestions on how to get ourselves organized and get started with it all.  They did tell us to start slow, one thing at a time.  Remember back last summer/fall when I realized we were in a marathon, not a sprint.  Yep, that was definitely reiterated.  The thing is, when I run, I like to pick up the pace a bit, just to get it over with.  It's not the running itself I like, it's the feeling of accomplishment when I am done.  It's the goal, the task, the end product.  That is the case with this.  I think we can have a lot of fun together on our journey, but I have got to keep the goal in mind, a hurt child getting well...MY hurt child that WILL get well.

Overall, it was a great week.  Maggie did AWESOME with Abbie and Jaymi, and the girls did AWESOME with Maggie.  We couldn't have asked for it to be better.  I was tired bouncing back and forth between the conference and Maggie (for nursing, meds, etc.), but it could have become very chaotic, and it didn't at all.  They would bring her to the lobby for me to nurse at our breaks, and Maggie would be serious and efficient with nursing.  There weren't any crazy meltdowns at all.  I'm bummed I didn't take any pictures of Maggie with the girls, but I think they took some we'll have to get from them.

We also made some FABULOUS new friends! Not many of the kiddos were with their parents, but a handful of families are in very similar positions that we are.  Unfortunately these families are all over, Pennsylavania, North Carolina, Delaware, Washington, Germany.  There are two families in particular we have fallen in love with that are far away.  Bruno's family is near Guadalajara, Mexico, and Izzy's family is in Arizona.  We were lucky enough to sit down and have dinner together last night and just laugh together.  Bruno and Izzy are in the same severe to profound range as Maggie and have very similar situations to ours.

One very interesting thing I observed that I didn't realize until the early hours of this morning.  The statistics for families with special needs kiddos and the divorce rate is outrageously high.  As we watched couples throughout the conference, you could see them almost lean into each other a little more.    They shared with us that one draft horse can pull 2 ton, but 2 draft horses can pull not only 4 ton, but 23 TON!  That's a pretty good return.  How cool of a program to get everyone on the same page and promoting couples growing together through this!  Love this aspect of the program!

Final thoughts...

Shawn is super hopeful and excited about what's to come.  Me?...a little overwhlemed at all that will have to take place.  Hopefully he realizes certain responsibilities will have to shift and we can work together together to implement a a plan to get our sweet baby doll on the right track!

Day 2...

Yesterday and this morning were big ideas and reinforced many things I already had researched.  When we got it more details about creating our program, I began to get overwhelmed.

Some of the things we need to do are:

Go into the dark closet, flash a bright flashlight at her eyes for 1 second, wait 5 seconds, then flash again.  Do this for 1 minute every 15 minutes throughout the day (totaling about 40 times/day).  This is to help stimulate pupil response and get her vision center to process sights better.

We also need to make loud startle sounds 3 times/day.

To awaken her tactile sense, we need to rub her down with 2 contrasting textures (rough/soft) 20 times/day.

We need to stimulate the pain sensation by quickly touching her with cold pack or hot spoon 10-20 times per day.

We can activate the olfactory sense by introducing 3 different scents 3 times in the morning, then 3 different ones in the afternoon.

Those are just the sensory stuff.  Tomorrow we will get into more motor stuff.

We learned more, but I'll have to share that later.  I'm too exhausted tonight.

Day One...

The first comment Shawn had at our first break was, "well...it looks like there might actually be some hope".

Major points for the day...

The seizures are not the problem, they are a symptom to alert us there is something neurological that needs to be addressed

I CanNOT fix my child.  I can provide neuro-developmental opportunities!

We KNOW Maggie.  As her parents, we are qualified to help her...more so than the professionals, but professionals can come alongside us.  We should be the ones in the driver seat, no one else!

We need to become Engineers

Chemical engineers-to assess her nutrition and how it affects the brain

Electrical engineers-help with her wiring

Civil engineers-deal with being able to track her and know where we are going

Mechanical engineers-figure out how to get her moving

(Good thing both my mom and dad are engineers!  That's my kind of problem solving)

There is no limit on her neurological wellness.

We should evaluate the abilities, not the disabilities.

We assessed her with a comprehensive integrative and developmental progression chart.  We identified her injury to be severe extensive brain stem/Limbic/cortex.  Her neurological age is 2.8 months, which shows she is operating at 21.5% for neurological functioning.  None of this surprises us, as we've known all the thing.  It was actually nice to have a tangible assessment that helped us identify where she is and where she needs to be going.  Plenty of room for improvement.  This also reassures me that the wait and see method is absolutely ridiculous.  If she is already neurologically behind and her chronological age keeps increasing, the spread is going to become greater and greater.

And one thing that was driven home multiple times...TUMMY TIME!  Kids don't spend nearly enough time on the floor on their bellies.  There are so many benefits to kids spending time on their bellies.  I'm hoping we will go into detail more, but it was mentioned many times today.  I have "more time on tummy" written at least 3 or 4 times in my notes!

More to come tomorrow!

P.S.  Maggie loved snuggling with the girls and did great today!

PA and The Family Hope Center

There is no doubt in my mind that God directed us to this place as the next step for Maggie's success.  However, I am fairly confident the enemy (Satan) has been trying to derail it.  He has done a decent job at taking up residency in my heart as we've worked through some issues.

Up until early last week, we weren't even sure if Shawn was going to be able to come and if he could come then he may have had to fly home early for a show.  At any rate, Momma was not thrilled, and the saying "if Momma ain't happy, ain't nobody happy" was in full force.  Thankfully that was resolved and he's with us for the whole trip.  Then we weren't sure about which vehicle to take, as the car I've been driving needs some attention.  Then the screaming/crying/teething ordeal made me dread going on a long car ride and leaving her during the days.  It just seemed one thing after another.  And yesterday morning, I woke up hateful (wait...let me correct that...I woke up in a great mood, but when it took forever to get us all out of the house I was NOT a pleasant person).  Ironically enough, Sunday's sermon was about anger.  Obviously I missed half of it tending to a crying baby.  Might have to get that one on CD.

Anyway, with all the little things, the thought had crossed my mind a few times over the past couple of weeks, "is satan trying to stop us from going?".  At lunch, while I was still very short with my husband, I went to pay for my salad and it was $6.66.  It was a clear reminder to me that Satan loves my pissy attitude and would love nothing more to see Shawn and I at odds with one another.  Finally, I made the conscious effort to pull it together and get a grip on my bad attitude.  Not always an easy task.

So, we made it here.  There was a mess up with room when we got here but we got it straightened out.  This is my 3rd or 4th time trying to get this post typed, as it keeps getting deleted It's all the little things.  Seriously Satan...just makes me want to cling to The Lord more and stand firmer in my convictions.

I think we are here and good to go though.  Our gracious friends, (2 of the girls) that we stay with on our way to CT came over to watch Maggie in the hotel room while we are at the conference.  So lucky to have them close!

And now for the conference preview... Basically Shawn and my brains will be bombarded with so much information about the brain that we will be lucky if they don't explode.  As the girls and I were scoping the hotel out, we caught a glimpse of the registration area.  Shawn and I each have a binder with our names on them and they were at least 1 1/2-2 inches thick, full of paper.  Wow wee!  That's a lot of info!

They require every parent to attend this conference prior to starting their program.  By the end of the week, we should be able to identify what part of Maggie's brain is "injured" and at what age she is operating, physically, developmentally, cognitively, etc.  Then we will also learn what the brain needs to grow and develop optimally.  I am hoping we will walk away with some good tools that we will be able to implement right away to try to awaken her brain.  We will also schedule her a 2 day appointment within the next couple of months.  That is when the professionals will assess her fully and roll out a Maggie tailored plan!

I've been told I will go to bed dreaming about the brain.    We have a handful of other "special" moms awaiting my feedback.  I'm sure we'll have plenty of info to share over the next couple of days.

Say a prayer for Abbie, Jaymi, and Mags, that they would have a wonderful time together!  And that Shawn and I would be attentive and have an ease of understanding, connection, and come up with practical ways for application!

Silly mommy and Daddy

Overall this past week has gone quite well.  It's amazing how much it helps just to bring the struggles we are having into the light and ask others to come alongside us in prayer.  Ironically enough (or a God thing), last week's sermon was about Galatians 6:2...."Bear one another's burdens, and so fulfill the law of Christ". It was about letting go of hurts and pains.  I took a couple of big ideas from it. 1) bearing each other's burdens is a command, not an option, and 2) self-sufficiency is a myth. It is actually pride, a sin.  This hit a little close to home as Shawn and I clearly know we can't do this on our own, a common thought is that we don't want to burden anyone else with asking for help for this or that.  The pride thing has provided me with a great opportunity to grow this past year!!

At any rate, this week seemed less scheduled.  We still had our typical PT, OT, and ST appointments, bur we got to go to a play date in the park with friends from church and hang out by the pool with some friends (and even stick our feet in...next time Mommy will be sure to bring swimsuits and the neck float!).  We also were able to eat quite a few meals out on the deck and overall just chill a bit.

And then Saturday afternoon hit...And the screaming began!!  Seemingly out of no where, Maggie just began crying, and screaming, and crying.  Suspecting gas, we tried moving her to every position possible.  We placed our hands on areas we thought might be troublesome, implementing what we know from therapy.  Every so often she would calm down for a bit.  At one point we suspected a restriction or something in her neck.  Maybe kidneys, or even stones from higher fat and protein diet this week.  We put her in the tub...that helped for a little bit, but then she would spasm and get mad again.  Finally, after 3 hours and tag teaming back and forth, we were at our wit's end.  I decided to just lay her on the futon near us because I couldn't think of anything else to do to help her.  Low and behold, she may have been telling us the whole time to just get our hands off of her.  She managed to quiet herself down and took a little doze. When she awoke a couple of hours later the fussin began again and we both thought..oh no!  As Shawn handed her to me, I caught a whiff of something.  Sure enough, there was a big ol hard turd in her diaper.  We don't have a clue when she deposited it.  Now, a couple of things about that.  Up until just before I laid her down, she had been in the tub or with her diaper open, as we were watching for action down there.  And secondly, when it is that big and firm, there is always a squeaking and squealing plus stiff legs that accompany it.  But, that was not all.  Shortly after getting her diaper changed, I come to find out she had 2 molars coming in.  Poor thing.  If only Mommy and Daddy could have figured it out sooner, we could have helped to alleviate some o the pain.  We were both relieved to know there was a known reason to her fussin and that there was not an increase in seizures after all that crying.  Unfortunately even the things we experience that are typical for other kids have an added dynamic of stress.  One of the meds she is on is known to cause irritability and rage, so the initial pain is one thing, but then it gets magnified.  Oh well!  Luckily on Sunday my fingers were already exploring her mouth, so I was much quicker at finding the 2 molars on the other side.  That's FOUR molars at once...WOWZERS girlie!

Updates

Trip to Iowa...

Great Grandma Myrt was excited to love on little lady

Maggie was a trooper of a traveler and survived the whirlwind of a weekend quite well.  At first, we were slightly concerned.  We had therapy in Knoxville and then hit the road.  We had only made it maybe an hour/hour and a half when she started fussing.  Ok, fussing might be a bit of an understatement...crying and screaming uncontrollably.  We had to stop a couple of times, get her out of the carseat, try to snuggle her, nurse her, anything.  One particular stop of about an hour of trying to console her, we didn't know if we would ever be able to put her back in the carseat and get back on the road, let alone make it all the way to Iowa.  As we finally did get on the road again, we noticed something...we began a descent from the Cumberland Plateau.  On top of that, we were in the middle of a storm.  Remember the whole cranial pressure issue from quite a few months back?  Yep, we think that's of concern again.  And what did we do?!?!  Keep her right in the middle of that chaos.  If we would have kept moving, it probably would have gotten better much quicker.  So, we are again reminded of the no flying issue.  As I so empathetically put it this week, the convenience of flying is not worth her head exploding.

Shawn's back mediation...

I guess we would say it went ok.  This ongoing back injury is from 2 1/2 years ago while working at University of Iowa.  With his records claiming he fell SIXTY feet off the ladder, we should have gotten a much bigger settlement.  It is over now, but given the lifelong issue of dealing with back pain, the settlement doesn't seem like much.

Great Grandma Carol too!

How was the benefit ride, you ask?
Well, I have 2 answers for that...absolutely crappy and absolutely wonderful!  The ride itself became nonexistent.  Grandpa, Grandma, and Aunt Audie thought they would brave the freezing cold rain.  They made it a mile 🚲.  Luckily, I bailed at the very last minute.  The combination of feeling how cold it was just running out to the bus and Shawn pointing out I would be of no help to Maggie if I got sick, was enough to persuade me out of getting on my bike.  And that meant I didn't get soaking wet!  It happened to be cold and rainy ALL weekend.  Us southerners were freezing!

The benefit itself was wonderful.  It was such a blessing to see so many friends and family come out and support Mags and Uncle Steve.  With money still coming in, it's looking like the event brought in a total of about $6,000. It's the $100 pickles this time!  (Thanks Dixie for donating such a yummy auction item!). Thank you to everyone that came out and donated!!  Big thanks to Dad and Carla for organizing it, Cousin Tara at Zsaavooz for the venue and food, and Grandma Sue, Grandpa Hank, Uncle Gary, Aunt Nancy, Erin, and Jesse for all the help setting up!!

Graduations

The initial reason we went to Iowa was for Aunt Nikki's high school graduation.  We were beginning to second guess our decision to go to that.  First of all, we were sitting on bleachers with no back support that we were afraid we were going to lose a kid down.  Luckily all were safe.  It was Grandma and Grandpa we should have been concerned about.  Grandpa dropped the flowers and Grandma dropped something else.  Anyone that's been to any graduation ceremony other than their own knows how long they can be.  Just before they started calling names, a tornado siren went off.  Are you kidding me?! A gym packed with people...that's just asking for pandemonium.  Luckily, an officer clarified that it was NOT a tornado.  Not so sure that I was any less concerned at that point.  So, ceremony carries on, until...all the lights in the gym go out.  There we sat in the dark.  Of course we had to wait for them to cool down and re-strike.  Needless to say, Aunt Nicole's graduation was surely memorable.  Hard to believe she is an independent adult now.

We were lucky enough that our trip also made it possible for us to attend another special graduates open house.  (Side note here: since moving to the south, I have come to realize that what I know of a traditional open house that everyone has, is a regional thing, more of a rarity down her.  Weird!). Anyway, this other special graduate is a young lady that I first met when I taught her Sunday School in 1st grade.  I went on to babysit her and her siblings, and even moved in and nanny-ed for them for a short period of time.  It is exciting to watch and see what God has in store for Nicole and Miranda as they both submit their lives to Him and begin a new season of life!
I did not quite expect the flood of emotions that came when we arrived at the Rowenhorst's.  You would think they were tears of joy for Miranda graduating, but no, I found them to be much more selfish.  We saw so many loving faces of friends that have cared for me and us for many years and the best I could describe it was like sliding into home base, a safe place.  Leading up to our visit, the days and nights have been long, as Maggie has been more unstable and fussy a lot, just not comfortable.  The spasms have continued and we all felt quite rocky.

It didn't help that the first person we saw while walking up to the house was a sweet sweet friend of mine that I've known for the past 10 years.  Karen KNOWS the tragedy of a child that is not well, as she lost not one, but 2 sons each shortly after they were born.  Of course, a big hug, and then tears.  Then we go inside and more people we love, and more importantly, that love on us, and more tears.  The pain of our situation was so apparent.  At the end of the night, I had to apologize for the mess that I was.  It sucks being so consumed by our situation that it is difficult to not let it overtake every social interaction.  It took me much more off-guard than I had expected.  Next time I'll try to get it out of my system by visiting them prior to a big social event.  Oh well, thank goodness they love and care for us so much!  And it was truly a blessing to see all these dear friends, mostly from my days at First Baptist!

A couple of other quick things...

While we were gone, a couple of prominent aging members of our church passed away.  The first one we did not know at all, but when the family asked the church secretary if there was anything in particular the church was raising funds for she told them about Maggie.  Not even knowing them, the family made a significant donation to our sweet little girl.    Wow!!

The other gentleman that passed away was a sweet fella that Maggie and I would take meals to this spring.  It was a blessing getting to know Fred and his daughter over the past few months.  I was particularly disappointed that we didn't make it a priority to visit him once he had moved to the nursing home.  Maggie and I were also quite bummed that we were able to attend the funeral due to scheduled therapy.  I learned if the Spirit prompts you to do something, act on it, or else you might not get another chance.

Now for the current situation...

Maggie's face says how we all felt

Quite a few weeks back, we began and since completed weaning her completely off the Clonazepam.  We also doubled her Zonisamide dosage, in hope that as for some others, that would be able to control the IS (infantile spasms).  No such luck!!😞  The spasms have actually gotten much worse, in frequency, duration, and intensity.  Her sleeping and eating pattern is all over the place, and she has become quite growly.  Most every time she wakes up she screams/cries until her spasms kick in, and then she spasms for a while.   Obviously, this all sucks!  We were patiently awaiting our doctor's appointment this week before we requested to change anything else up.  So, that leads into the doctor appointments.  Shawn was able to go with us, which I needed given the uncertainty of our current situation and meeting with a new doctor.  Overall, the appointments were quite uneventful...didn't amount to much at all.  Our neurologist did recommend trying her on a new drug that is similar to the Clonazepam, but doesn't have the same concerns about long term use.  The new neurogeneticist sent out a couple of labs, and GI noted her growth was a little lower than we'd like to see.  One thing the geneticist explained is that she is most likely having trouble transitioning from asleep to awake and just goes straight to an irritability.  That and learning that she has some spasticity in her ankle were the only 2 real tidbits for the day.  We sat around waiting for a urine sample for one of the tests, but finally after waiting plenty long enough, they told us we could bring a sample back next time.  Our first appointment was 7:50 that morning and we didn't end up getting home until 10:30pm.  Long day for all 3 of us.  We left frustrated.  I HATE the "I'll see you in 3-4 months."  Really?! You haven't done anything.  What's going to change between now and then?  Why aren't you interested in searching for answers...causes?  Seriously...a waste of our day for a whole lot of nothing!

Please pray for us.

I've noticed more checking out behaviors on my part, a sign of being in a more depressive state.  Being able to identify it helps tremendously, so we may be moving forward already

As Maggie cooed in her crib last night  (of course, wide awake in the middle of the night, because that's what she does now), Shawn and I lay sobbing, weeping over our life.  I HATE that I just watch my little girl spasm all day long, that it takes everything in me to try to get her to eat up good, that I've only really seen her smile twice in the past 4 1/2 months.  I HATE that she can't poop and every time we change medicine around it messes that all up again.  I just HATE where we are right now.  I can handle bumps in the road, but not a 1,000 mile detour.  I want my little girl back, the little girl that was beginning to make so much progress at the beginning of February, a little girl that doesn't seem so lost and disconnected, a little girl that is comfortable and not in pain, a little girl that doesn't spasm every time her brain tries to process a piece of information.

We are hopeful that the stuff we have planned this summer will help awaken and organize her brain a bit more, that by August we will hit the ground running with a therapy protocol and she'll start making strides again.  Even if they are Maggie Strides, (as my dear friend Amber describes them)!

That's all for now...plenty, right?