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?

Happy Birthday Sweet Magdalyn Joy!!

Crazy to think exactly a year ago at this time we were prepping for surgery and preparing to welcome a baby into the world.  Some of you probably remember staying up late to find out if it was a boy or girl.  With so much anticipation, we never could have expected the year we would have.

After approximately...

365 days

2,000 diaper changes

65,000 minutes of nursing

4 trips to an emergency room

26 nights of hospital stays

90 mLs of blood draws

2 MRIs

3 CT scans

18 EEGs

220 hours of therapy

4 trips to Connecticut

14 different medications

18,000 miles logged on the car

500 hours spent researching on the internet

hundreds and hundreds of friends encouraging, praying, and supporting us

AND one BIG God carrying us

...we have finally arrived at a very special day, Maggie' 1st birthday!!!

There were many of nights over the past year that Shawn and I lay in bed pondering whether or not we would ever have the opportunity to celebrate this milestone!   And here we are...Wow!!  There is no way we could have made it through this year without all of the support we've received.  THANK YOU!!

How did we celebrate, you ask... As typical, we had a trip to Knoxville for therapy.  Since they have all been such an integral part of us being able to celebrate today, Maggie brought them a nice plant as a Thank you!

Then the final Wednesday night family meal at church was a birthday celebration for Little Miss!  The donations from her meal and the evening brought in about $1,800...wow!  Maggie slept through the entire dinner and woke up as everyone headed off to their classes.  Little Stinker!

While teaching Pre-K at Heritage, I started the tradition of following a traditional Happy Birthday song with the doxology.  I knew this was a tradition I wanted to carry into my future family.  Little did I know, requesting we do that at church tonight would be so emotional.  Yes, today is about Maggie because it her birthday, but really the praise and honor belongs to God.  He is the one that has truly blessed us with this year and deserves ALL our praise!!

Praise Gid from whom all blessings flow

Praise Him all creatures here below

Praise Him above ye Heavenly Host

Praise Father, Son, and Holy Ghost

I can't say it loud enough...AMEN!!

And, tonight, instead of lying her down in her bed, I decided to snuggler her close longer, savoring every moment we have!

Lots happening

This is a post that is long overdue. (aka will be long)

Lovin on Great Grandma Sue

Snugglin with Great Grandpa Hank

First things first, our trip to the Ranch, Eagle Ranch that is, went great!!  We got to see lots of family, Grandmas and Grandpas, Aunties, Cousins, etc.  Maggie had a great time with everyone.  She even worked diligently and rolled over twice while we were there (stomach to back).  One of the times was while we were playing cards.  Maggie was working hard at it, and then we all got distracted by Daddy trying to cheat.  We looked back, and there she was on her back.

Unfortunately it rained on Saturday for the ride and was a little chilly.  But, everyone was still in good spirits, and that just meant more time for everyone to hang out.  On Saturday night we had an auction that went really well.  Little did we know that Uncle Tyler was such a good auctioneer and Great Aunt Nancy's hot pepper jelly would be such a big hit.  Between the ride and the auction we raised $4,100! Awesome!

Nappin with Grandma Cheryl

But, the best part of the weekend, was Sunday morning.  We had a chance to share our story.  Mom, Jerry, Brooke, and Tyler have just been getting Cowboy Church up and in the works.  Without a music component completely in place yet, Shawn was excited to be leading worship again.  Before the auction, I was able to share a bit of Maggie's medical history and we planned for me to share a bit of our testimony at Cowboy Church.  Sunday morning, the pastor that usually comes out had to bail because he was sick.  Initially Jerry was a little bummed when he told us Cowboy Church would be a flop.  I was excited because it meant I didn't need to condense so much.  I was able to share, without concern for time, what God has taught us along this journey.  (Even at that, it was still just a minute sprinkling of what we have been learning).  There were a few tears shed, but it was such an honor to have that platform.  There is no doubt in my mind that God is using our situation.  The gift of boldness is something He has definitely blessed me with through this journey.  It is my prayer that God was able to use those words for His glory and that lives were changed by our story.

Ranger Ride at the Ranch

While we were in Missouri, my sister lined up an appointment for something called Zyto scan.  A non-invasive electronic energy way of bio-communication, it was able to assess her body for where was most stressed, food stressors and foods that would be good for her.  This was something that I was a little skeptical of but thought it could hold some validity.  Interestingly enough, it assessed her kidneys as highly stressed, just like Piotr had earlier that week.  The food that would be most beneficial (by a long shot) was rabbit.  Kinda crazy, but I tracked some down and we are getting some.  (Not literally bunny tracking :)...Earth Fare has a supplier)  We are taking all this feedback into account as we introduce foods.  The scan also recommended some supplements that would be beneficial for her to take, one of which she is already on, just up the dose a bit.  We are continuing to research and explore the other ones.

My thoughts on the whole Zyto scan is that it is only as good as the creator/programmer.  After doing it, I think it is a valuable tool to help us, but nothing we do will be able to fully encompass the capacity for which The Creator has created our bodies.  There will be flaws in any avenue we pursue.  It just means finding the best information we can and trying to get Mags as optimal as possible, all the while submitting to her (our) Creator's direction.

Since that trip...
Maggie has continued to work on her rolling over skills.  It takes so much effort, but she can do it, and that's what's important.  By repetition, eventually it'll become natural for her.  Sleep schedule has been a little goofy.  She's also been eating up really well lately and desperately working on holding her head up.  She starting drinking from a cup this week and has been doing really well with it.  Mommy is surprised we don't end up with more down her front!  Being on the brink of her first birthday next week, she is truly becoming a toddler.

Regrettably, we are still seeing the spasms.  GRR...  However, I emailed the neurologist with my reccomendation.  It's a little goofy request, weaning her completely off the Clonazepam and upping her Zonisamide (This is one that some kids with IS have had success with, she is already on it and it has tested well for her)  Surprisely, the doctor responded that he "agreed and the plan was very sound".  I consider that a win, that my gut instinct and the doctor were in agreement!  So, this week we started weaning the Clonazepam the rest of the way, and she's already started to regain some of her spunk!  I saw true smiles twice today...first time since probably February.  Love this!!!

We have really been pondering the next piece to our puzzle.  Our therapy with Piotr and up in Connecticut has been awesome structurally and for restoring the integrity of her systems.  I think it is still a critical component, but we are at a point where we also need more functional tools.  A while back, I cam across the website of a place called the Family Hope Center.  It's located in Philadelphia.  Just recently, in one of the Infantile Spasm groups, a mom mentioned this center as a critical tool in advancing their son developmentally and the best bang for their buck.  After talking with her on the phone asking lots of questions, and further delving into their website, today I realized, with a lot of confidence that this is the next piece for us.  So much so that as I was looking into the websites, I  began to tear up at various times.  Tears saying, "this is what's next!"  The first thing is to attend an interactive 3 day conference where we are taught all about the brain, what part is responsible for what and where has been affected, how it changes and grows and what is needed to foster that.  After that, we make a 2 day appointment.  The first day they assess where she is at, medically, neurologically, developmentally, etc.  The second day, they roll out her personalized plan.  The plan will include an education/sensory/social program, nutritional program, physical program, and phyisiological/repiration program.  Then we will have the tools to implement what we need to at home.  I am very excited to see what will come from this.  I can tell she is a smart cookie, but I often feel she is trapped and her brain is not so sure what to do with that body of hers.  I have been researching the neuroplasticy of the brain a lot, and there is so much hope for the opportunity for change.  The mother I spoke with was talking about her sons brain becoming more organized.  An organized brain allows less opportunity for seizures to creep in.  From the chaos her sons brain was in, it is now MORE organized than typical for his peers.  With that being said, this may not be the end all be all, but I know it is a piece of the puzzle for now.

Side note about the choas/organization of the brain.  In small group, we were just talking about chaos as related to allowing Satan free reign and how we can have victory over the chaos through intimacy with God.  Going along the same lines of thinking with toxicity and sin, limiting the toxicity in her body will also help limit the chaos (avoiding sin limits chaos)  I think I need to better gather all my thoughts about this to communicate it.  Just thought I'd give you a little insight into my mind...Shawn always says I am an external processor!  Lucky for you all reading this just wanting to know a bit about how Maggie is  :)

Things to come...
Sweet Baby Girl turns one on Wednesday, May 15th!  The Wednesday night meal at church is for little bug!  This is a day we didn't know if we would ever be able to celebrate.  Wear purple on Wednesday to celebrate and show your support.  Take a picture in your purple and post it on the new Miracle 4 Maggie FB page we created!

Trip to Iowa for Aunt Nikki's high school graduation on Memorial Day weekend.

Grandma and Grandpa Leyen have also organized a benefit bike ride/birthday party/cruise party/just stop in to say hi party for Maggie and Uncle Steve.  May 25 in Cedar Falls.

We registered Maggie as a consignor at the Just Consign It consignment sale the first weekend in June.  If you are local and have treasures to part with, let us know when you can drop your stuff by our place.  Shawn's putting a trailer in the shop for us to load everything directly on to.  We will get it tagged and take it to the sale.  Win-win....you can de-clutter while donating to Little Bug.

Big day at Vandy on June 5th...appointments with neurology, GI, and a new one for us, a metabolic specialist.

We will be headed to the Family Hope Center training conference in Philadelphia June 18-20.

What have you been praying for?

Not sure what you all have been praying for. Just after I posted the plea for more prayers for the spasms to stop, it seemed they actually got more intense. Grr...
Thus, we upped her evening dose again. And her bowels have slowed again. And her overall toxicity has increased again. (I can tell her liver is working hard as she has more breakouts popping up. Our therapist has also been monitoring this toxicity) And we wait for spasm control again. And we still see the spasms again. Not happy about this continuing. Often times when she is spasming, my eyes had been welling up with years as I pondering what is going on inside her brain, the damage that is being caused, and the effects on her future. A couple of things I have become apparent to me. 1) the reminder that those FEARS are not TRUTH. The truth is that I have one sweet little girl sitting in front of me that is making progress and trying to get her body to do new things. 2) She is more than likely completely aware of her surroundings while spasming. Instead of laying her down and just letting her spasm, I have tried to be more present while she is spasming by reassuring and talking to her.
So, to answer my most difficult question, "how is Maggie?" "We still don't have the spasms controlled yet, but she still seems to be making some forward progress."
We also went to the cardiologist on Monday. The original PFO (slight hile in her heart) is closing up nicely and it would not be causing the seizure issues. He said any heart related/blood flow issues are secondary to the seizures. As crazy as this sounds, I was somewhat disappointed. It would just be nice to have something to put our finger on. But if there was something wrong, the "fix" would most likely be more medicine or open heart surgery, neither of which we would be ok with. Shawn convinced me that it really was good news. I just can't let go of my suspicion of bloodflow/oxygen/pressure issues. Piotr also pointed out that she is "fixing" stuff every time we go to therapy. She is making good changes and getting stronger. In our world of instant gratification, I am to the point of looking for that quick fix. Don't think that's in our cards. But I'm thinking learning patience and endurance is. Hmm...
Right now we are on our way to Grandma and Grandpa Hennings' Ranch in Missouri. Tomorrow they are having a benefit ride and auction for Maggie on the trails at the campground. This is Maggie's first time to visit. Aunt Brooke, Uncle Tyler, and the girls live there now too. Plus Gma and Gpa Leyen, Great Aunt Linda, and Great Grandma and Grandpa are coming down to visit too! We figured Maggie better make an appearance at her own benefit. We're excited to see everyone, and we're only an hour away!!

Waiting for spasm control

I guess we are long overdue for an update.  I keep thinking if I wait a couple of more days, the content of what I share will change.  I would love to say, "the new medicine is effective and the spasms are under control."  Unfortunately, that is not the case.  As everyone asks, "How's she doing?"  My patent answer this week and the past month has been..."these spasms are still not under control.  We are waiting for the medicine to get them regulated."  Grr...  It's almost been 2 months since the spasms started and 4 weeks since we've started the medicine.  Originally our neurologist said it could take at least a month, but in the most recent conversation he said it takes some kids 1-2 months for the meds to have full efficacy.  Hmm...  There is just no good answer.  I would rather this medicine would kick in than us having to explore other options.  (That stinkin hormone therapy looms over our heads with each day the spasms are still present.)  Heck, what would actually be wonderful is if we didn't have to deal with these spasms or seizures at all!
Luckily the spasms don't seem painful, but they are a form of a generalized seizure, affecting all over her brain.  Grr...  I've joined a couple of groups for Infantile Spasms that have been a good chance to bounce questions around.  It is surprising to me though, how all over the place this can be.  Everyone has a completely different experience.  And, the outcomes are just as despairing.  Only 1 in 10 have full recovery, 3 of 10 develop autism, etc..  Our goal is to beat the statistics, and if not, to help Mags have the most comfortable and enjoyable life she can have.
The past couple of weeks we have spent all our extra energy working on strengthening muscles.  This means Maggie has spent a lot of time on her lying on her side.  Once she determines a direction to go, then I put her back on her side.  On her tummy she has been pushing herself up some and is getting stronger with lifting her head.  She got a new wedge for Easter and has been having fun getting a new perspective of things around her.  She's getting stronger!!  We just keep waiting for her to be able to stabilize her head.

Look at how long she is.  Big girl!

In other news...(I've committed to a level of transparency so those of you loving on us and encouraging us in this journey can better know how to pray for us.)  Mommy and Daddy have had days of major struggles lately.  My family jokes about being on Code Orange. (change of mood/stress level that precedes a blow up)  It's generally the warning code used to describe my Dad's tone in his voice, but Shawn pointed out the other day that the undercurrent of stress in our household has us both in a constant state of Code Orange.  That's not the best for our relationship or others around us.  Luckily, we have an amazing small group that has helped us recognize more the roots of issues, helped us to better appreciate one another, and prompted us to continue strengthen our relationships with Christ.
It is absolutely amazing to me the simple things that make life that much more bearable: The recent sunshine has been tremendous in boosting mood and motivation.  I was finally able to go for a run yesterday, and it felt so good.  My family needs me to do that much more consistently.  And, without a doubt, the most beneficial discipline for keeping me sharp mentally and emotionally is my spiritual relationship with the Lord and spending time in God's Word.  Where we are in life, it is so easy to get bogged down by all the "what-ifs", but God's Word is Truth that transcends all the possibilities.  He's got us in the palm of His hand.
A few lyrics from our Easter service jumped out to me:
From Mighty to Save:
So take me as You find me
All my fears & failures
Fill my life again

I give my life to follow
Everything I believe in
Now I surrender (I surrender)

 And, basically the whole song of Because He Lives:

Easter doll baby

(Chorus)
Because he lives
I can face tomorrow
Because he lives
All fear is gone
Because I know
He holds the future
And life is worth the living
Just because he lives

 (Verse 2)
How sweet to hold
A newborn baby
And feel the pride
And joy he gives
But greater still
The calm assurance
This child can face
Uncertain days
Because he lives


(Verse 3)
And then one day
I'll cross the river
I'll fight life's final war with pain
And then as death
Gives way to victory
I'll see the lights
Of glory and
I'll know he lives


As the tears were streaming down my face, a sweet friend and momma of a little guy close to Maggie's age leaned over and whispered, "it wasn't very nice to Rachael Selmeski for us to do these songs today."

The kids weren't too thrilled with the picture taking!

Ok...a couple of other things.  We got the opportunity last week to meet our little neuro buddy, Everett.  How awesome to spend time with another family that gets what we are experiencing. 

And, finally, today we brought home a feeding chair from therapy.  We're testing it out.  If it works well, we will look into getting one to keep.  It seems to be helping support her more properly and better keep her diaphragm opened up.  If this can help feedings go better, that will allow us to utilize our limited awake time in other ways. Yeah!

Maybe if I actually updated more often these post wouldn't have to be an all evening endeavor.

Join us in ramping up the prayers for complete control of the spasms soon!

Another trip in the books

Katie and Mags

Maggie and I made another successful trip up to Connecticut. This time it was just the two of us.  What a tremendous little traveler she is.  We stayed with some friends in Pennsylvania on the way there and back.  So much fun to be able to hang with the Smith's in the middle of our journey.  The girls love to love on my little girl!

We also swung by and saw Cousins Amelia and Quin.  Maggie was all chuckles for Quin for a while.  Amelia was trying to not take it personally.  We all couldn't help but laugh when Quin was able to get her smiling up a storm.  As always, it was great to see them.  Maggie adores both of them, and I think the street runs both ways on that one.  Aunt Rachael always enjoys the time too!

While at Center of IMT, we really got to some big projects and what I would say is the meat of a lot of it.  The majority of the time was spent treating her noggin in some form or fashion.  They worked on balancing her neurotransmitters (which GABA specifically relates to her new med as well).  Some intercranial work was done through her mouth.  Lots of time was spent at the occiput and occipital lobe, releasing some of the pressure and tension surrounding this region.  They also worked to increase her bloodflow (both into and out of her cranium).  Lots of big projects that are quite significant.  Over the next couple of weeks we anticipate continuing to notice changes as her body works to assimilate everything.  Work was done to allow more lengthening for her spine, and I'm pretty sure she grew an inch of two overnight (maybe not that much, but she did get a little longer!)

Thanks Mom for putting coconut oil in my hair!

Sporting the spiky hair

Unfortunately we are still seeing the spasms and waiting for that to get all regulated.  There is a tricky balance with meds and therapy and how everything works together.  Too much medicine makes systems very sluggish, but not enough is not good with uncontrolled seizures.  There is no doubt in my mind that therapy has helped tremendously in the overall seizure picture, allowing for less med dependency.  But these new spasms we don't quite have a handle on yet. We did start the new medicine, and are just now up to the full dose.  We should know within the next couple of weeks if this med is going to be effective or not.

Chillin at the hotel one night!

For now, we'll keep on keeping on.  It's great to be back home with Daddy and those crazy doggies!





P.S. It's a little bit shorter post since it's time for this momma to get some rest!

Holding our own

I'll try to make this quick, as I have a lot to do still tonight. 
My response this week for "how's Maggie?" is "we're holding our own".
We started the new medicine last Friday.  It broke our hearts to see little peanut conked out all through the weekend and a good share of the week.  And, to my surprise, that brought us back to feeding issues.  She wasn't too interested in eating...just sleeping.  She's progressively doing better with eating again.  Finally, by Friday, she regained a little bit of her spunk.  But, then Friday evening we had to up the evening dose again.  Then next week we will up the morning dose too.  Hopefully, in a month we won't be seeing the spasms AND her body will have regulated the medicine a bit to allow her to be her spunky little self.  As for the spasms, they appear to have decreased in intensity some, but seem to be a little more random.  Before, they were always when she woke up.  Now they slip in at other times sporadically.  Don't know what that's all about, but oh well. A game of wait and see.

Follow me on this one.  Some of our dear friends here mentioned they had friends in Florida with Hyperbaric Oxygen Chambers.  I began researching this a little more the other night.  I came across a few that I liked and looked all over their websites.  One in particular sparked my interest as it can be scheduled in cooperation with this TheraSuit Therapy (something else I've been looking into...wouldn't be until she's 2 1/2).  At any rate, I asked Shelley for more info about her friends, and guess what??  They are the people I was already skimming the website of.   Coincidence...I think not!

When we left CT last month, they felt it important that we get back up sooner rather than later.  They were really starting to get into more the core of some of what we are dealing with.  Due to trying to figure the spasms out, we just finally got everything confirmed at the end of this week, and Mags and I are leaving after church tomorrow to make our trek up to Connecticut.  Fortunately, we will be stopping at our sweet friends' place in Pennsylvania.  We are also planning to go see Cousins Amelia and Quin for just a bit when we get to CT on Monday.  Maybe an IKEA too!  Then she has therapy Tuesday, Wednesday, Thursday, and 1/2 day Friday.  We will head for home after that.  Each trip we have made, I've known that the next one is covered financially as well.  This trip brings us close to the end of our current resources.  Knowing that, I've tried not to allow fear to creep in.  Instead, I am confident that God will provide exactly what we need at exactly the right time.  Interestingly enough, we received a couple of donations out of the blue this week that are big helps towards what's ahead.

My goal right now is to get this trip under our belt, and then when we return it will be back to the drawing board to reassess where we are with everything.  If there are other things we should be exploring, etc. If anyone has any great fundraising ideas, please let me know. We've tossed around ideas like spaghetti dinner with silent auction -here and/or maybe while in Iowa in May, having runners collect sponsorships for Miles4Maggie and participate in any local run.  Can't really do another gift wrapping in April, unless some people have lots and lots of birthdays to prep for :) My mom and sister are prepping for a benefit ride for Mags at the end of April.  Hopefully we'll get to go too and it will bring in some funds.  Anyway...enough about that, we'll be fine!

I really need to get packing so we are ready to roll out in the morning!
By the way...Little Miss was 10 months old yesterday.  Crazy that my baby doll is getting so big!

Holding our heads up

I had my day of grieving and now it's time to look up and keep moving forward.  After talking with the neurologist, I'm not quite as discouraged.  It's still not good, but it's not necessarily worse.  It's just a different manifestation.  Though Infantile Spasms are a specific diagnosis, that diagnosis doesn't necessarily encompass all of what's going on.  Basically, there is this sub-clinical seizure activity, and when we see the jerks, that is an electrical storm going on.  The priority is that we do need to get them stopped as soon as possible.  So, we've got 24 hours to decide.  The answer to prayer is that the hormone therapy is NOT what the doctor recommended as the first avenue.  His recommendation is Vigabratin, which is an anti-convulsant.  A new one for her.  The major side effect is that it can cause peripheral vision loss.  It's a fairly high rate too, 1 in 3 patients taking this drug.  But it's a little lower in babies, and the duration of treatment is a component.  Our neurologist says that the spasms are a transient thing and he doesn't expect her to be on the medicine for more than a year.  From there we will have to continue to assess additional seizure activity.  Uncontrolled seizure activity that could strong cause intellectual impairment or peripheral vision loss from the drug.  I guess we'll take the possibility of tunnel vision.
Once again, Satan had a way of paralyzing us in the fears of "what if".  So many people say "I don't know how you do it."  "Wow, you're so strong."  I'd like to think so too, but really it's true for everyone.  In everything, we have to make the decision whether or not we are going to submit to the Lord.  Once we do, then we just have to follow.  Unfortunately, it's not a one time decision, but a constant reliance.  But there is so much freedom once we realize we really don't have control.
Today was a good day.  Maggie is still getting stronger and stronger, and smiley.  We had a good day at therapy and a fairly uneventful day.  And, I have really been praying about and thinking through how I could serve at church.  This past Sunday was an Impact Team meeting to talk about service opportunities.  My trouble is that I can't really commit (granted any day we could be out of town or stuck in the hospital, etc.).  What's the point of service without commitment, right?  The other issue is that I've always got my little sidekick attached to my hip.  Taking meals to shut-ins after the Wednesday meal was a desire of the fellowship team.  And I instantly knew that was a perfect fit for us.  Tonight I was able to implement it and loved it.  Maggie stayed home with Daddy tonight, but I'm so excited about our service opportunity.  It's a great gesture, but I did clarify that I will bring it when we can, but not to wait around for us.  Hopefully sweet little bug will be able to bring some joy to those that can't get out and about.  And, Maggie's always open for a little extra loving on.  Plus, it's great for us to get over ourselves a little bit here and there to encourage others.  I was beaming driving around tonight.  It continues to amaze me how much we are wired for service, not just for others, but for our own sake too.  If you are miserable and think others need to serve you, think again.  You'll be surprised what serving others can do for you!
And, to end our evening, Shawn's buddy just invited us to join their family in Savannah for the weekend.  The place to stay is provided.  A little flabbergasted, we thought why not.  We're thinking it'll be a great get-away for all of us given our paths have been going in opposite directions lately.

Dark and dreary day (again)

I got the phone call we had been waiting for. I'm not really sure what good news would have been, but the nurse confirmed what I had become pretty confident of. The episodes are Infantile Spasms. The chaotic brainwaves confirmed what I knew in my heart, but somehow hearing the diagnosis makes it a little more of a reality. Sad and disappointed, I sit and snuggle my sweet little baby doll.
But we're making good progress. This isn't fair.
Everything I read has such disturbing news. "Little Spasms: Big consequences", "severe and catastrophic", "high risk of mental retardation" (I'll go off on a tangent on this one at some point), "difficult to control and even death". All of these make me ill. However, I did come to the realization and told Shawn the other day that we have already been and are in the catastrophic department. I've expected some bumps along the road, but not a whole other beast to deal with. We've been doing so good and making so much progress that I wasn't anticipating a swing back in this direction so far. But here we are at the bottom again.
The nurse let me know that our neurologist will be calling us tomorrow to discuss medication. That has me all disturbed too, because the 2 main options could wreck havoc on all her other systems, and I already know that they usually don't take the whole body into consideration. But, the only goal with Infantile Spasms is 100% seizure control.. One of the treatments is a hormone therapy. That makes the hair on the back of my neck stand up. I guess I won't buy worry until it comes. Who knows what the doctor's recommendation will be.
Sure enough as I was reading, it says IS occurs in anywhere from 1 in 2,000 to 4,000 babies, with it being more prevalent in boys that girls. Yep, that's our rare little lady for you! All I know is once she kicks this all, she'll beat the crap out of any boy that tries to mess with her. She is so strong and one tough little cookie!

"Though sorrow may last for the night, JOY comes in the morning. " We're waiting for that!

Patience is a virtue?!?!

Patience...waiting...and waiting... and waiting.

Pleasant moment singing with Daddy!

We had the EEG done at East Tennessee Children's on Thursday morning. We had never had to prepare for an EEG with sleep deprivation before. I figured it could just be because she is getting older now. Or it could be that the majority of her other times in the helmet have been the result of going to the ER. At any rate keeping Maggie sleep deprived was not fun for anyone involved. Wednesday night she got furious with me to the point of nearly gagging herself. Then in the morning, she was good for the first 1 1/2 hours. She did get to eat the first hour she was up and we just snuggled a while. Then it got ugly for a bit. Finally we woke Daddy up ( or the screaming from the monster did) so I could get ready. I threatened him with his life if he let her fall asleep, after all the effort I had already put into this endeavor. Within just a couple of minutes he walks in, with her almost asleep, "are you sure we can't just let her sleep a little bit?" Daddy didn't want to have to be the bad guy, so I took her and started bouncing, singing, dancing obnoxiously through the house. He got the picture and took back over. The dogs thought we were crazy! Next thing I know she's quieted down just kind of zoning. Her eyes were open though, so even if she was sleeping with them open, we considered her awake. After that little bit, she lay cooing on the floor with Daddy. We found every noise making toy we could!
Nana picked us up and the real adventure began. Maggie again cycled through the escalating frustration, ticked at mom/hate the world, silent zone, pleasant. Each time she cycled through these, the pleasant phase got shorter and shorter. And all the tricks were less and less effective. The ice pack and flicking the feet seemed to agitate her the most. However, I didn't see her eyes open for the majority of the 1 1/2 hour trip. Just fussing!

One seriously tired little girl!  Are we there yet?!?!

Time actually seemed to go by decently fast as I was working hard the whole time. That meant I was just as exhausted as little miss by the time we got there. When we were checking in, I saw the order from our doctor that just said "capture the episodes".  It didn't say anything about sleep deprived!  Knowing she does it every time she wakes up, I don't think we needed to do the deprivation at all. But, if they were doing it, I'm sure they wanted to be sure to get the worst, as lack of sleep and stress aggravate seizure activity. Oh well, we did what we were told. So the tech (we had him before when she was first diagnosed) got her all hooked up. By the time he got all things set, she was out! An opportune time for seizures to occur is just as they are going to sleep, so usually a study is about 30 minutes, the last 5 awake. Knowing her episodes are upon waking, we woke her a little earlier. Since the episode doesn't start until a couple of minutes after stirring, I am always hopeful she may not do it, but sure enough, they started. The tech could barely keep up documenting the clinical aspect. This was one time we were glad they showed up. An epileptic will show abnormal discharges regardless, but the goal is always to capture an episode on the EEG to provide more specific details, particularly with the different episodes.  So we finished that all up and were off to Piotr's office for therapy. I kept anticipating getting an emergency phone call telling me we had to get back to the hospital immediately, but that call never came. Nor has any other phone call...

Still so tired!

Little Miss Serious

The neurologist at East Tennessee had to review the study and then fax a copy to our neurologist at Vanderbilt. They were also sending the disk to him. Lovely that we got caught up in the weekend with it too. If I had known there would be so much delay, driving the 4 hours to Vanderbilt would have not been a problem at all.
On Friday night I also began to get paranoid that her breathing was being compromised. It's so hard. If we go to the hospital, Maggie's condition has to ability to freak everyone out very quickly and create a bunch of unneeded hype. But, by the time a breathing situation gets serious, it's usually SERIOUS! So we waited and prayed for stability.  It may just be congestion, but who knows.  Thank goodness there are a couple of nurses at church for me to bounce questions off of.
As of this afternoon when I called Vanderbilt, the nurse had said they did receive the report, but not the disk yet.  They were getting it to our doctor to look over and then he will be getting in touch with us.  I hate the fact that the nurse probably knew something, but couldn't say one way or the other, so we just wait, and wait, and wait.
Interestingly enough, when I pulled up the Bible app yesterday, this was the verse of the day glaring in my face, "⁸ But do not forget this one thing, dear friends: With the Lord a day is like a thousand years, and a thousand years are like a day. ⁹ The Lord is not slow in keeping his promise, as some understand slowness. Instead he is patient with you, not wanting anyone to perish, but everyone to come to repentance."  2 Peter 3:8-9

Ok, ok...I guess this isn't really that long to wait.

A couple of other side notes.  When we got to the hospital on Thursday morning, I noticed this rash on Maggie's forehead.  What could it be?  I immediately started to analyze..excessive blood vessels?? why?? all the crying?? any other changes to diet?? environment?? Liver detoxing??  It even got a little worse after the study, so I took a picture of it to send to the doctor if we needed to.  I wasn't freaking out, just processing and assessing internally.  Well, as we were having our lunch, Nana pondered the scratches and wondered if they could be from my zipper or necklace.  Duh...Of course it was the necklace.  Not everything is worth over-analyzing little Momma!  It was a good reminder that every so often I get to deal with normal Mommy things too.
And, remember the whole pee ordeal.  Well, I guess something was wrong with it.  They called Shawn, so I don't really know all the details.  He said contaminated or something.  So, they sent us another kit and the pediatric urine collection bags, so tonight/morning I get to attempt this whole pee pee endeavor again.
And then we will wait...