Friday, July 11, 2014

2 Years!

This weekend marks two years since Levi got out of the hospital with his sudden onset of seizures.  In fact, today is the North Mankato Fun Days, which is exactly where we were when he had his second cluster of seizures that confirmed to us that something was, in fact, wrong.  We ended that day with the beginning of a week long stay in Mayo Clinic in Rochester.

His prognosis has been up and down since that point.  If you've followed along, you know the story.  If you haven't, here's a brief synopsis - his prognosis has been up and down since that point. :) Yes, I'm being that brief, because I want to share our most recent situation.

In March of this year, Levi had a burst of language that, I believe, more than doubled his vocabulary.  He was speaking in four and five word sentences all the time and even more complex sentences on occasion. Toward the beginning of May, we started to feel like he was maybe using fewer words than he had been. We, and his speech therapist thought maybe he was just having a bad week.  Within less than three weeks he had lost so much language that his speech therapist told us to call his doctor right away.  So, naturally, we called his doctor right away.

Dr Q (our pediatric neurologist) wanted Levi to come in for a 24 hour EEG as soon as possible.  His concern - a type of seizure that happens during sleep and causes loss of language.  So, the next day, we headed over to Mayo for a couple of nights.  They didn't see what they were looking for so we decided to take the next step, an MRI, to see if there were any physical abnormalities in Levi's brain.

It took a few weeks to get in for the appointment.  So, on June 30, we trekked back over to Mayo for an early morning MRI.  They didn't see any physical abnormalities, which is good, but they did note that the coating on the nerves in his brain was not forming fast enough.  This had us worried for a couple of days, but after consultations with several neurologists, it was decided that the delay in the coating was so minimal that it couldn't possibly be causing any problems.  In fact, they seem to think the development of the nerve coating will catch up.  So, we still had no answers as to WHY Levi has lost his language.  This led Dr Q to recommend genetic studies and he sent us to the Developmental Pediatrician, Dr T.

This leads us to yesterday's appointment with Dr T.  At this point, Levi has now lost at least 75%-80% of his language, probably more, but I'm trying to be upbeat.  He doesn't SAY much of anything.  He can point to things if you ask him where it is, but he can't say the words.  (Please don't ask if he's just being stubborn.  NO. He is not.)  He actually tries to say the words, but it all comes out in jibberish, like a stroke victim.  No he hasn't had a stroke, but his speech therapist and Dr T feel that it is possible that he could be having seizures or some kind of abnormal activity in the same part of his brain that would cause a stroke victim to do this.

So, yesterday's appointment with Dr T went something like this: I fill out the usual developmental survey.  Dr T looks at the results.  Dr T is very concerned about the results.  Dr T actually leaves to get a neurologist in the room with us to help with a game plan.  Dr T returns, unsuccessful.  Dr T gets a nurse and barks out a list of orders to have her MAKE SURE we follow up with other doctors.  Nurse says there's a six month wait list to see said other doctors. Dr T says to request that Levi be placed on the top of the waiting list as this is an urgent matter.

These other doctors will require much more testing.  We're actually trying to get bumped ahead with some of our other appointments and testing as well.  But, we're looking at the next months being full of trips to Mayo Clinic for lots more tests to find resolution for this loss of language.

At first, I was discouraged about the urgency of these tests.  Both Dr Q and Dr T are adamant that we get Levi in for these tests as soon as possible so we don't risk his losing other skills.  This is scary to me.  But, my (nurse) sister put it this way - if Levi's doctors think it's urgent, it's because they think they can do something about it.  If there wasn't any way to help him, they wouldn't be pushing so hard to get him tested right away.  This is encouraging to me.

In the end, we're trusting that God has the perfect plan for my son.  Though, he has very little language at three and a half years old, he is happy.  He gets to see the world from a perspective that NO ONE ELSE will ever get to see it.  He is beautifully and wonderfully made and I thank God for that.

Here is a song I wrote for my sweet boy while we stayed in the hospital for his EEG last month.

And a picture on the ferris wheel today.  Thank you North Mankato Fun Days for offering free rides and food to our special needs community.  It made for a happy day for so many!!

Thursday, April 17, 2014

Seven Years

When I started this blog, it was because I needed a creative outlet.  I shared my music, poetry, and random thoughts about life.  Nearly two years ago, I found myself in a hospital room trying to text lengthy updates about Levi and his condition.  That, obviously, didn't work very well and sparked the evolution of this blog. Since then, I've focused on Levi, his condition, and the effects it has had on our family.  Today, though, I want to shift the focus, a bit, to my husband.

This week marks our seventh wedding anniversary, which is, in part, why I want to celebrate my husband.  I say, 'in part', because I've wanted to do this for months now.  I've just never gotten around to it and our anniversary gave me that extra oomph to get it done.

And now, the words:

Of all of the people on the face of the earth, I respect my husband the most.  He is one of the most genuine, thoughtful, generous, and patient people I know.  He SERVES his family.  He works excruciatingly long hours and follows that, not by plopping down on the couch to play video games or watch sports like his stereotypical American counterparts; but rather he ends his long days (the ones that he doesn't work until midnight or later) by playing with our children, helping with the dishes, and rubbing my aching back.  He helps with the little things like getting the kids out the door when it's time to leave or by preparing breakfast for us, on occasion, before he leaves for work, while we're still sleeping.

He is strong.  Some jerks (Yes. Jerks.) might see what he does and say he's 'whipped'. On the contrary, there have been countless times that I have pleaded with him to stop and just sit down, but he, being the strong (stubborn) man that he is, insists on serving his family.  He knows how to put his foot down.  It's just that he serves us out of a quiet strength.  He's not a William Wallace from "Braveheart" who runs in front of the masses and cries out in elaborate speech for the sake of a cause.  He's the warrior directly behind William Wallace, who courageously fights at the front lines, setting the example of what it means to take a stand, not with words, but with action. He is that kind of strong.

He puts Christ first.  He bases his decisions and actions on the Word of God.  His strength and his service are prime examples of how he strives to be like Christ.  He is passionate about seeing the glory of God heal and transform broken lives.  He is steadfast in his faith and his relationship with God,  Through everything we've gone through with Levi, he has turned his own broken heart over to God and been concerned more for me and our boys than for himself.  

All of this together, and so much more, lend to my having the best husband I could possibly have. I could go on forever, but I don't want to make all of you other ladies out there feel too jealous. :)

Seven years!  Seven incredible, beautiful, and sometimes difficult years!  And no itch!  That's not to say we haven't had our moments, but that's all they were - moments. We leave them at that.  And, though the fiery romance can be interrupted with long shifts, poopy diapers, and snotty noses, it is through those very things that I have found an even deeper kind of love - respect.  I am truly overwhelmed by the respect I have for my husband.  It wells up inside of me and I just have to get it out!

Happy Anniversary Jeremiah Luntsford!  I love you!

Monday, March 31, 2014

My Hope

It's been a crazy couple of months since I last posted.  Crazy and difficult.  And good. I haven't posted before now because, honestly, I haven't had the heart to do it.  We got some negative news about Levi a couple of months ago that kind of sent me into an emotional whirlwind and I just haven't been able to put it out there in the wide open web.  Until now.

To be brief, in a matter of two weeks, he had two tests and several appointments that landed him with a worse developmental diagnosis than before.  When he first had the seizures (a year and a half ago), he was assessed as functioning at about 30% behind.  We had actually been hoping that he was catching up.  Unfortunately, the tests show that he has actually fallen further behind and is now functioning closer to 40% under his age level. We're talking, he may not ever be able to be fully independent as an adult, behind. Even now, I can't come up with the words to describe how this impacted us.   

The first couple of weeks were accompanied by several emotional break downs. At first, I couldn't tell anyone.  I couldn't say it out loud.  I didn't want it to be real.  But, when I was finally able to share it, we found what an amazing support system we have.  A few people came and prayed with us and each of us took a day of the week to fast for my boy.  I don't know if you believe in prayer.  I do.  Along with a new listening therapy, that week started a burst of language for Levi.  Since then, I would say he has almost doubled his vocabulary!  He still has some communication blocks and many other difficulties, BUT, we're watching him progress quickly and I am hopeful for good news at his next appointments and with his future testing.

With what I've learned through all of this, I know that there's still a chance that the numbers haven't changed for the better. There have been so many sudden spurts of development and, so far, the numbers have only gone down. But, a good friend reminded me that my hope is not in how my son is performing.  Rather, my hope is in Christ.  It's easy to lose sight of that, but remembering it has completely changed the way I've been able to look at this situation.

I know that no matter what happens, my hope is found in the One who can use Levi, just as he is, to make a difference or if HE wants, He can change it all in a moment.  I don't like the unknown.  But rather than focus on what I don't know, I'm going to lean on what I do know - My Faithful Faithful God.

Here is a song that has helped to carry me to that place of trusting in Him without the borders of my own will and desire.