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Shawn, originally New Yorker, transported to Tennessee for a few years, chased the love of his life in Iowa, only to move her back to Tennessee. Rachael, small town Iowa girl that traveled the globe to find her love in Tennessee. Little did we know how much our lives would change when Little Miss Magdalyn Joy entered the world. Join our journey through the unknown of Maggie's medical issues, known truths of God, and the nuts and bolts of life.

12.01.2013

Some wind out of our sails

Before we headed out here, I tried to make it very clear that I anticipated things to get worse before they got better.  I think I need to tell it to myself a bit more, because I am not so sure I want to accept it.  The last couple of days haven't been so great.  We have been in the process of weaning her Zonisamide, and there is a lot of toxicity for her body to deal with throughout any wean.  The tricky part is increasing the MMJ enough to have some seizure control, without prompt too much detoxing.  Unfortunately, the delicate balancing act is a little off kilter right now.  I'll get to that in a bit.  The good stuff first.

Some of our new wonderful friends and the whole family took us in for Thanksgiving.  We had a blast and just felt right at home with their family.  At one point, the sister was afraid that we thought their family might be too overboard and we might think they are CRAZY.  Are you kidding me?!?  It would take some MAJOR craziness to come anywhere close to competing with our families!! :)  It's amazing how God prepared people to embrace us when we arrived here in Colorado.  As Sheri was bringing me home at midnight, after our shopping adventure and LOTS of laughter, she said to me, "It feels like I have known you for longer than 3 weeks.  I think God might have had a plan in all this."  So true!  It's great to find couple friends.  Shawn and Danny click, particularly in some of their oddities...oh...and the Worship arena too!  And laughter abounds when Sheri and I are together.  What a TREMENDOUS blessing this family has been to us!

So, we were sitting at dinner having a grand ol' time, almost finished up eating.  Maggie was sitting in her seat right up next to the table, but she was napping.  Shawn taps on me to look at Maggie, and there she was having little convulsions, lips smacking, awakened from her nap by an ugly seizure.  My heart sank.  We haven't seen this type of seizure for quite some time.  The look of shock and fear post ictal reminded me of the ugly beast we are dealing with.  It only lasted about 20 seconds, but that's quite the killjoy to such a great afternoon.

Sweet Little Bug
But that's not all...a while later, when I was feeding her, I started to bend down to pick up her spoon, and she had a spasm, hitting her head on the corner of the table.  Way to go...Mom of the Year Award right here!!  In all honesty, I am shocked that it has taken this long for something like that to happen, the way her spasms come out of nowhere and can be so forceful.  I think it sounded a lot worse than it was.  She was fine after a little bit of ice and some lovin.  Now, if the tonic-clonic would have happened after the table, then ya, I would have thought it caused something, but the seizure beast unlocked on it's own.  This little bump is the least of our worries.

The last couple of days, she has seemed to be dealing with processing a lot in her body.  She's been feverish, was a little constipated (though we did get some poops today), her eyes have been fluttering a lot, having troubles falling asleep, and just overall OFF!  She's had a couple more what seem to be tonic-clonics that bring her out of sleep too.  There are so many irons in the fire right now...colds going around, therapy bringing more toxicity to the surface, zonisamide wean...the list goes on.....
Overall, quite discouraging, but we stay the course.  We knew this could happen.  Now we just have to keep working through it.  But, I also know the power of enlisting all our prayer warriors, and though I can't wait to share the "seizure-free news" someday, I know that God is working through our entire journey.  I have seen it time and time again, when I am transparent and share our darker moments, our prayer warriors step up to the plate, and God honors those faithful prayers.  Please join us in praying for stability for her little body.

I know it may seem odd for some that I am able to sit here and say that we are so so thankful for so so much.  We have had tremendous blessings come out of this crazy journey.  And, there is no doubt this is where God has a planted for this season.  As it was pointed out in the message at church on Wednesday night, we are called to be thankful IN all circumstances, not necessarily for the circumstances themselves.  It was interesting when I scrolled through FB Thursday morning and saw post after post from all the Realm families that have moved away from their families to help provide a better life for their children.  These families are the people I know that probably have some of the most CRUMMY of circumstances (have critically ill children, in transitions, away from all extended family and in some cases the nuclear family is split up for the time being, taking pay cuts, or not finding jobs, moving from established homes to small apartments), and yet these are the ones with thanksgiving pouring from them.  What a testimony to being thankful in ALL circumstances.
How can you not be thankful when see this magnificent sight everyday!


2 comments:

  1. Praying for Mags as she weans and detoxes. Praying for mom and dad too. Love and miss you like crazy!

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  2. We are not surprised by the ups and downs. We remember that you warned us very clearly to expect this. So, hang in there and just tell it like it is. As requested, praying for you! Mark Liebert

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