About Us

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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.


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.

1 comment:

  1. Rachael - I continue to follow your journey with your sweet baby girl. Your post yesterday left me with a heavy heart for your heartache. But lo and behold, here you are today, looking forward with such strength and faith - doing all you can for Maggie. It is so true that when we are weak, God makes us strong - true for Maggie, too. Still praying for your precious family. Mary Ellen Honeycutt