Q1 Recap

In an effort to remember, even a fraction of these last three months, this is going to be my best attempt at a recap of our first quarter of 2014.  Actually, not even my best attempt, but it's what I can do in the limited time I have while I eat lunch and wash clothes before I head to the bus stop.

This, for sure, is a quarter worth remembering.

LOGAN

We started off the year strong!  We said goodbye to the ketogenic diet after just over 3 years.  There was nothing bitter sweet about this goodbye either - it was sweet as sweet can be.  For the seven months that it worked wonders for our little boy, we loved it.  But for the remaining 32 months, it was a daily reminder of the lengths families will go to, to gain even the slightest bit of seizure control.

We visited our favorite neuro in Charlottesville and decided to try and wean off of one of his 3 seizure meds.  Onfi is a benzodiazepine.  You can read about them here, but basically it would be ideal for him not to be on one forever - to put it mildly.  The first stage of the wean went well....well, relatively speaking.  He spent a portion of the time with his little head bouncing quite a bit and things were not better immediately.  I almost gave up just before the one month mark of making the change, but at Fred's urging we held out a few more days and he was better.  Seizures were better, he was clearer overall and we seemed to have turned a corner!  Whoo hoo!  I can safely say we won this round.

The long term plan was to reduce the Onfi and at some point add a new drug (Felbamate), hopefully getting off of the Onfi completely.

We waited a little while longer and started the next wean.  This is a painfully slow process sometimes - we were weaning 2.5mg about every 6 weeks.  At this rate it would take a year or more just to get him off of this one med.

His body had other plans.  The second wean didn't go so well.  Here's the run down of how it looked:

1.  We had been doing lab work to get a baseline for starting Felbamate (it comes with a few possible     side effects - aplastic anemia and liver failure. You know, no big deal).  At the time we were starting the next wean his lab work was coming back with some elevated liver enzyme levels.  We decided to continue to monitor these as elevated liver enzyme levels are not something you want when considering a drug that has possible liver failure as a side effect.

2.  During this same time, his seizures were not good at all.  My hope was that we were just going through a rough period like we did with the first wean, but we were only in the first week.  One afternoon a bad seizure started, not unlike ones we have seen before.  I gave Diastat and worked to reposition his head to help him breathe better.  That worked, until air stopped moving.  He was trying to breathe, but nothing was flowing in or out.  It was like the valve was closed and he couldn't open it.  This only lasted 30 seconds or so, his lips were only a light shade of purple and his face was a little splotchy, but after it kept happening - this mama got a little nervous.  I called 911.

So, off we went to the ER.  In true Logan fashion, he looked all but fine by the time we arrived at Levine.  He might have even giggled.  That goes over well in a packed children's ER.  In our defense, I do believe that the oxygen in the ambulance helped to perk him up.

3.  Somewhere in the middle of all of this Logan starts to sneeze and seem to have a runny nose.  Not uncommon for him with allergy season in full swing, but usually pretty challenging since he can't blow his nose and he doesn't do a lot to help move all that junk around.  It means suction, nasal saline spray, sitting in a steamy bathroom, humidifiers, lots of checking his lungs at home to make sure nothing is settling in, keeping a close eye on his ears and a pretty cranky little one.

So the above sets the stage and here's how it all played out.

The congestion progressed and got much, much worse.  We tried treating with what we had at home and we were suctioning throughout each day and sometimes at night.  He was having trouble eating at times because of all the junk and he had to sleep propped up on pillows.  I probably waited too long, but we finally planned to start an antibiotic to try and clear things up.  He's had trouble with antibiotics in the past (rough on his tummy), so I tried to hold out.

During all of this we are still doing bloodwork because his liver levels keep going up.  His Depakote level is also going up and we don't know why.  Other than coming down on the Onfi we haven't changed anything.  Although there could be various reasons why the liver levels look as they do - most docs don't really get too concerned until the levels are in the 400s an we were only in the 100s.  As a side note, I like that our doc gets a little concerned...makes a mama feel a sense of comfort even if we may seem to be overreacting.

As luck would have it (that's laced with heavy sarcasm) Logan picks up the stomach bug that is slithering its way through our family.  Although it was really only a few hours of him being sick to his stomach, it's a whole different ballgame with Logan.  With the congestion, vomiting, the fact that he doesn't lean over a toilet and he's a 46 lb wet noodle, I stayed a little on edge that afternoon.  He couldn't keep anything down for a while so by that evening when he had not wet a diaper, had slept all day, was still congested and I had to think about keeping seizure meds in him - we considered taking him to the ER.  Considered to the point we were in the car on the way there when he perked up a little.  We gave him about 10cc of water and it stayed down.  We turned around and headed home.  Thank goodness, because he perked up and we fared much better than had we spent hours in the ER.

Finally I was able to start the antibiotic the next day.  It took the entire 10-day course, but he is finally better.  He doesn't have to sleep propped up and the suction machine has been washed a put away for a few days now.  Just in time for the next round of allergies to hit. :)

His liver levels also came back down and it all could have been due to the sickness making its way through his little body.  God bless that child.  He should act miserable with all that is going, but never really does.

His Depakote level is still going up, but it could be that since we came off of the diet, his body is metabolizing the medication differently.  We'll keep any eye on it from time to time.

We fit a little school and therapies in during all of the last quarter somehow, but it certainly hasn't been our best record for attendance.

He also got new AFO's and shoes because he is growing like a weed.  We are in the process of trying to get a new stander and a wheelchair.  The wheelchair will lead us to a van soon, but we are at least a few months out on that.

We are still trying to find a nurse to fill the additional 16 hours that we have had approved for over a year - but that's a novel on it's own.  And I have absolutely no energy or desire to relive those details...if you don't have anything nice to say don't say anything at all keeps ringing in my head.  So I won't say anything.

The rest of us were here in the first quarter as well.

Freddie spent his days at school and his evenings telling us how he hates school!  He doesn't really hate it, but with all the rain and cloudy, cold days, I think we were all in a funk.  He is doing really well at school and honestly seems to be having a blast.  But you remember how it is, you spend all day with teachers telling you what to do in a structured environment, by the time you get home you start hearing that it's time to do homework, eat dinner, get your bath and go to bed.  All you want is summer vacation!

A highlight memory for me is that Freddie pulled his own tooth in the carpool line one morning! One of his top front teeth had gotten so loose that I was able to coax him into getting it out.  I was beside myself excited, but the teacher that got him out didn't think it was nearly as big of a deal.  Come to think of it, neither did Freddie. Oh well, I was giddy all day.  The next one is loose too.  Maybe I'll tone down my excitement this time.  Or maybe not...we need a little excitement!  The tooth fairy was even pretty excited last time, but if she keeps up this level of excitement, she'll be broke by tooth number 5!

Now that the days are getting longer, it's getting harder to get things done early - but sometimes that's ok.  We are doing the best we can at balancing life, and a little sunshine and bike riding are sometimes the best part of the balancing we do!

Freddie is still super into Nascar.  He loves watching races and knows more than I could ever hope to.    And he understands much more than I think a child his age is given credit.  More than a few eyebrows have been raised when they hear him talk and spout out facts.  And it doesn't matter where we are - Nascar Hall of Fame or Pet Smart - he'll tell you all he knows.  He is precious.

I've also noticed over the last few months how much my boys love each other.  They are interacting with each other more and more and there are no words to describe it, you just have to see it.  It's a connection that simply happens by the grace and design of God.  The world seems to stand still when it happens and it's all I can do to try and take it in, imprint it on my soul in the hopes of never forgetting what it looks and feels like to experience it first hand.  They are two very, very special and wonderful creations.

As many of you know we took a little trip in February.  If you don't know and you had to guess...you would never guess this one.

Rented RV, family of four headed south.  We didn't just go to the Daytona 500, we stayed in the infield.  And we didn't just stay in the infield - we had front row seats to the annual wheelbarrow races held at this particular spot in the infield every year.  You will never be able to appreciate all that this experience offered to the senses without being there.  People were amazed that we ended up in this particular spot having never been before.  Our response to them?  "Just lucky, I guess!"

In all honesty though, we had the best experience.  We survived the first night in the RV with the train running by all night while alerting way in advance of the crossing that we were near.  And the boys actually slept through the whole train experience.  The people beside us in the infield could not have been nicer and helped us out with a few things new RV operators have to learn.  And a precious friend of ours was able to help us have a race experience that was beyond our wildest dreams and we did it all as a family...our little family.

And, we have gotten pretty good at picking some nice RV spots for a quick overnight stay just off of I-95.

RV trips for the Wingates - we're 2 for 2.

The house is coming along and now isn't taking up most of my days every week.  We can see the light at the end of the tunnel and I feel overwhelmed every time I think about it.  Freddie is already planning the parties for when we move back in.  We cannot WAIT to have you guys come visit!  We've missed everyone so much.

We also battled a little sickness this year so far.  I had the flu at one point, but luckily we quarantined me well so no one else got it.  I can't say the same thing for the stomach bug that ran rampant recently.

It went something like this.

Freddie was out on Spring Break - WHOO HOO!  His last day of school was on Friday and he went down with it overnight Saturday night.  He was one sick little boy, but by Monday he was better.  Fred woke me up overnight Tuesday night so I could get in the bed with Logan because he wasn't feeling well....he went down shortly after that.  A couple hours later our nurse texted me that she had it.  We were one our own that day and I felt terrible we had infected her.  I wouldn't let anyone even cross the threshold of the garage because I may need them later and needed them to stay well.  Logan went down that afternoon.

Nana and I thought we had escaped it.  We were cleaning and getting the house ready for the showings we had that weekend (we have to show the rental house to potential renters).  Overnight Friday night/early Saturday morning we knew we were wrong.  Fred was completely on his own Saturday, but Kim was back Sunday.

It honestly took us over a week to completely fight it, but I can tell you - it will make you appreciate the days you feel good!

Logan has had some vomiting episodes since then, but we think that is mainly due to the congestion.

There's also the little matter of the Medical Marijuana topic that has been so hot this year!  I'm involved in it in the sense that I read a lot about it, talk to people about it a lot and am trying to do what is best for all of our children concerning it - but it is not ruling my life and we are not moving to Colorado.

This year was also big for me in that I was ordained as a Deacon at our church.  I remember when Fred was ordained and I was beside myself with emotion.  So proud of him, so honored to be his wife and so in awe of the man and servant that he is.  I was on the receiving end of blessings this time and it was beyond words.  To be able to have wonderful friends, my parents and my mother in law there was incredibly special  The words spoken to me and the emotion surrounding that day will never in a lifetime be forgotten.  And at the very end, my sweet husband came up with both of our boys and prayed as we all huddled together.  He always knows how to touch my heart like no one else.

To say it's been a full 3 months feels inadequate.  But it depends on what it's being compared to.  It's just life.  Time is not meant to be spent coasting.  I know so...many...families that are battling, fighting for the lives of their children and loved ones.  We all have to pull together in every way we can.  That's how we survive and it's how we'll help others survive too.

I have been doing the best Bible Study with Karen Kingsbury on Facebook and it involves reading the New Testament, finishing with Revelation on Easter Sunday.  It is teaching me every single day...about life.  That combined with Jesus Calling, I am growing and learning when I thought there wasn't that much growing and learning left.  And it's teaching me that growing and learning doesn't end.  It doesn't stop.  It's not a destination and by embracing it instead of fighting, I'm finally getting it.

Oh and we are kicking off the second quarter in a pretty big way.  Logan turns FIVE on April 8th.  I never, ever in a million years could have imagined a five years like the five years we've had. I feel like I should throw the biggest celebration around.  But instead, we will celebrate our family.  I'll probably see if I can get people to wear RED (which is a color LJ loves) not purple that day.  It will be about him, not Epilepsy.  Maybe we'll have cake - and this year he even gets to taste it.  And maybe we'll go for a walk - Logan and his whole family, which is HIS favorite thing to do.

I love my family.  I love our chaos.  I love that we are team.  I love that we love each other - even if it's messy at times.  I love that we have a GOD to rely on, depend on and be forgiven by.

I love that I'm aware of life enough these days to love ALL of this.

Bring on Q2 2014!!