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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?