We are eastbound once again!  We had a very busy night at Duke as they ran tests and got Harper hooked up for the EEG (which was a battle to end all battles), but it felt good to have so many people focused on her who were in tune with her condition.

We had rounds with a team of eight doctors this morning, then a special neurological team of four, one of whom is our regular neurologist.  They had received conflicting reports about her seizure activity yesterday, which was frustrating, but we got everything straight and they decided that with her as stable as she was (and with so much medication in her system) there was really no need to make her stay up there.

So, the final verdict?  There was no sign of any new developments on the EEG, and once again despite hours of seizing Harper is showing no signs of brain damage from it.  She did suffer from status epilepticus (life threatening seizures that last longer than five minutes),  but they’re categorizing it as a breakthrough seizure, which could be triggered by a number of factors including not enough meds, too much medication, growth spurt or change in metabolism, low blood sugar (wasn’t the case for her this time), not enough sleep, or a virus or infection… In other words, lots of possibilities but we can’t tell for sure, so we are staying more aware of eating and sleeping habits and germ exposure.

We are adding a second medication twice daily now, and are waiting for lab results to see if we need to increase our current med.  Other than that, we keep our current emergency plan in place, and continue to pray for peace and complete healing.  We’ve basically been told once again that given her history and the trauma her brain has been through, this is just to be expected and we do our best to manage things.

We cannot say enough how grateful we are for all of you who walk this journey with us.  While this wasn’t exactly the answer we were hoping for, we are thankful that we once again get to take our girl back home, and that she has so many people out there that love her.  And God has given us a girl who is a constant reminder of the gift in each day, who demonstrates strength and fortitude in times of trial, and who exhibits the beauty of grace as she comes through challenges with smiles and love and forgiveness even when we have to put her through the most unpleasant of circumstances.  We are blessed far more than we deserve ❤️

I’m writing this from a hospital room at Duke after midnight, so please excuse my typos and mistakes, but I wanted to record the events of the last 24 hours while they’re fresh in my mind.  And before I get to the details, let me just say that we are absolutely OVERWHELMED at the outpouring of God’s love that we have felt… All of the messages and words of encouragement, hospital visits, offers of help, caring for our girls… And PRAYING!… We are a blessed family to have such phenomenal family and friends.

Now, the details on our day… I woke up shortly after 6:30 Wednesday morning to a rhythmic tapping on my back, followed by the guttural noises of Harper seizing beside me.  I called Kirby into the room and we started watching the clock and trying to get her to respond to us, and at one point she seemed to, so we hesitated on administering the Diastat.  We got her into the living room where she started to vomit and convulse again, so we grabbed the meds and called the paramedics.

By the time they arrived she seemed postictal, but in the ambulance her oxygen level started to drop, requiring her to wear an oxygen max.  We got right into the ER this time and saw a doctor right away, and his plan was to just so the usual bloodwork and keep an eye on her for a little while, despite the fact that I requested he call her doctor at Duke. However, Kirby and I began to notice that her eyes were shifting right and beading off and on, but they insisted she was fine.

After about an hour or so, Harper began vomiting- her eyes would flutter and bead like crazy, then she would commit, and this happened 5-6 times in a row before someone finally listened to us.  However, even then they decided to just give her Zofran for nausea… But they couldn’t give it to her because her jaws were completely clenched shut, and they finally believed us that she was seizing.  The doctor decided to call Duke, but told me that sending her there probably wasn’t an option.

The nurse started an IV, and within minutes Harper went into a full seizure.   They administered one dose of Ativan but no change at all, so they did a second dose and started an IV drip of another medication… And still no change.  Everyone began panicking as it continued on and her oxygen levels dropped again.  They did one more double dose of Ativan, and the full body convulsions subsided, but her right side and mouth continued to spasm for another hour.

We got word that Duke had Harper on their list as a priority patient, so she would get the first bed to come available.  She finally fell into a deep sleep, and was able to come off of the oxygen mask mid-afternoon.  She developed a fever and kept it most of the day, but woke up asking about her big sisters.  She was a little woozy and irritable, and it took her a while to use her right arm at all, but she became more and more like herself through the evening.

We left Wilmington in an ambulance around 8:30, and she was tough to deal with all the way to Durham.  They had her room ready for her, did the initial assessment, and now we’re settled in for hopefully a few hours of sleep before the doctors make rounds in the morning.

We have no idea what to expect tomorrow, but we feel confident that Harper is exactly where she needs to be right now.  She is in good hands here at Duke, but she’s in the best hands of our Heavenly Father.  Thank you all for praying us through the day…

Every so often you have to buckle down and do those things you really don’t want to do.  This evening was one of those times for me.  You see, while we’ve been facing some tough realities this past week, I’ve still been in a slight stage of denial, putting off certain tasks for later, believing that doing so was buying me more time.

But, as Harper had some mild seizure activity Sunday, and then had an “off” day yesterday, and then had a small seizure this afternoon, my husband informed me that he packed his “go-bag,” and I knew I needed to stop pretending and get prepared. (Although we are still steadily praying that we won’t need to actually utilize our preparations!)

So, I replenished the go-bag for Harper and me.  If you’re not familiar with that concept, here’s the scoop- I have a bag packed and ready to go at all times.  It has a day’s worth of essentials… Toiletries, change of clothes for Harper and myself, sippy cup, a spare blankie (if you know Harper, you get the importance of this!), bottle of water, pack of crackers, phone charger, hair ties, socks (another Harper thing), jacket, and my glasses.  It saves a lot of hassle for my family when I’m in the ambulance with her and they need to know what to bring to the hospital, and keeps us prepared to be gone for a day or two at any given time.

I also sat down with a fancy new notebook and recorded all the details I could remember about Harper’s seizures over the past month.  (This is where my blog came in handy!). It was a bit unnerving to see just the facts listed out with all the dates of what we’ve seen, big and small.  But now it’s all in a quick list for the doctor, compiled in a pretty little notebook that fits just right in her bag (as if all that cuteness somehow makes it all a little happier).

And now everything is ready and we just… Keep living.  We hope for the best while preparing for the worst, and try to go about normal day-to-day life the best that we know how.  Sometimes it feels like we are waiting for the bad to come, but that’s not how God has called us to live.  Instead, we embrace every moment, recognizing that every “normal” is in fact a beautiful gift, one that no one is guaranteed.  And as our journey has shifted a bit, I’m seeing more and more that there are even gifts in the “abnormal” as well… It just takes a shift in perspective.

Now, I would be lying if I said that I’m not a little bit scared of what lies ahead.  I don’t always understand the path I’m on, and there is a natural fear of the unknown.  It can be easy to wonder why my daughter hasn’t been completely healed yet- we’ve seen miracles beyond what we could ever deserve, but why not complete healing?  I can’t answer that… But I know and I trust the One who can.  I see Him at work still.  I feel His presence in a real and tangible way.  He’s there when I seek Him, and even on the days I feel like running in the opposite direction, He uses His people to reach me and draw me back.  I have been overwhelmed this week with encouragement and support in various ways from so many, and it has been a beautiful reminder of our unity as the body of Christ.  I’m ever grateful for His continued faithfulness, and thank you to those of you who are praying.  ❤️

Isn’t it funny how one moment, one phone call, one conversation can completely rock your world, send you spinning into this alter universe where everything seems uncertain and nothing makes sense?  I’ve been doing this for three years now with Harper, and you would think that by now I wouldn’t get shaken quite so easily.  I mean, at some point, it gets easier and you get used to the unknowns, right?

Honestly, I don’t know.  Maybe it does, and I’m just weaker than most.  Or maybe it does, but we just aren’t there yet.  Or maybe it just doesn’t… Doesn’t get easier, doesn’t get less scary, doesn’t get more predictable, doesn’t become less painful.  Maybe I’m a little bit like Charlie Brown who keeps going back to kick that football with hopes of a different outcome, only to find myself on the ground once more.

The past 24 hours have been draining.  After our hospital trip Monday, I spent the day yesterday tied to my phone, emailing and calling doctors and pharmacists to get everyone on the same page.  That may sound like a small feat, but it seriously took all day, and the final result was to increase Harper’s medication once again.  Based on the medicine levels in her blood tests, the doctor thinks that Harper is metabolizing her medication at a faster rate than most children.  More daily meds wasn’t really what I wanted to hear- and I’ll admit that I broke down and had a moment once we got it all straight- but at least it was an answer.

With that, I just kind of accepted that this is normal procedure and not a major thing, just a need to tweak meds again.  But then the neurologist from Duke called me for a more personal chat this morning, and gave us a big ol’ reality check.  After lots of questions and note taking, he proceeded to tell me that what we are seeing is not good… That these big seizures are coming too frequently, that they are very dangerous for Harper, that they shouldn’t be lasting as long as they do… That there is most likely a lot more seizure activity that we aren’t noticing… That he’s surprised (but encouraged) that we haven’t started seeing evidence of delay or brain damage yet.  It was a bit of a sucker punch to the gut, another moment that sent me reeling.

That being said, we are making some changes.  He wants us to give this new dosage a shot, but her next seizure will land us an extended stay at Duke- he said about a week for them to do extensive EEG studying to determine what’s going on and what course of action to take.  He was also concerned that we may not be able to wait until the fall to have our annual MRI with the neurosurgeon, but for now we wait.  In addition to the increased meds at home, we are changing our plan of action a bit- if she is seizing and it is more than a focal seizure, no more waiting five minutes to administer the Diastat.  It will be done right away, and we are to be sure we stay in close contact with him personally from here on out.

A lot to swallow, a lot to process, and a lot to pray about- but not a lot for God to handle.  He’s still got this.  Even tonight as my mind was tired and I felt pressed, He reminded me of His presence, of His hand on her as she giggled and danced and enjoyed life.  Yes, one moment can change everything, but each moment is a gift.

First, let me start by saying that I write these detailed posts as a way to keep note of all of the events we go through with Harper.  It helps us to have a record of when things have happened, and also to look back for patterns as we go through more and more of these episodes.  I share for those of you who ask for specific ways to pray for her.  That being said, we awoke to another eventful day with Harper today.  At first I was amazed that I was able to get up before her and get the day going, but now I know that I should be alarmed when she’s off of her schedule.  She did wake up and make it out of bed on her own, but when she came to me she was barely able to walk, was not talking, and she couldn’t maintain eye contact with me.

It amazes me how much of a routine we have developed with these seizures now.  Everyone stays so calm.  My oldest daughter automatically starts noting the time for me as we get Harper on her side on a quilt on the floor and gather towels for when she vomits.  We get the phones ready- one for me to dial 9-1-1 and the other for the girls to call family, and get the emergency medicine ready for use.  There’s even a bag packed and ready to go with a day’s worth of essentials for Harper and Mom.

So far every seizure has been different.  Just Sunday she seized while we were at church- running wide open down the hall and suddenly fell and started mildly seizing.  On that day she had a series of small seizures over 15-20 minutes and then fell fast asleep and that was it.  Today started as the series of small seizures over ten minutes, but then progressed into a full-blown seizure that lasted ten minutes straight.  This seizure was also impairing the left side of her body, whereas we normally see it only on the right side.  However, because her entire body was seizing and her muscles were so tight, I was not able to administer her meds- and then she came out of it and started fighting me about the time the paramedics arrived.

Due to our last experience and her tendency to relapse into seizures during these spells, we were strongly advised to go on to the hospital, and Harper continued to fight all the way there.  She was not thrilled to ride in the ambulance, and did not care to have everyone mess with her today.  We were greeted by the same doctor we saw just a couple of weeks ago, and he remembered us and knew exactly how to proceed.  He ordered the blood work, but getting that blood was yet another battle.  For some reason it is a major ordeal to gain IV access on Harper- she doesn’t have easy veins.  Today was no exception, and it was particularly challenging given her feisty temperament… She was much more alert today than she has been in the past.  The first team of nurses that attempted laughed at her strong fight and told me to be encouraged because she is obviously going to do great things with all of that strength and determination!

A team came down from the pediatric unit and we all worked together to hold her down while they finally got her IV started.  The blood work for today only showed that she was dehydrated, so she was given IV fluids and we were able to go home.  She did not seize anymore at the hospital, so we were able to avoid any of those awful, heavy-duty medications that make her so loopy and unable to function, praise God!  They are also testing her levels of seizure medication to see where we stand with her current dosage- too little can cause seizures, but too much can cause seizures.  And of course we’re also concerned that she may not be getting the full dose in her each time due to the fight we have at home over medicine, so these test results should shed some light on that for us.

This journey is becoming quite surreal for me at this stage.  So often these days I feel like I’m watching someone else’s life.  I don’t really have the words for it.  We were sent into such a whirlwind of crazy events when Harper was first born, and her first year was a steady progression forward, just watching God answer prayers as she met milestone after milestone.  Then we had a year of “normal.”  And then the first seizure came, and we had close to a year of “normal” again… but now it seems that this strange turn of events is our new normal as the seizures come more and more frequently.  She’s had three seizure episodes (episodes because she has multiple seizures each time) in barely two and a half weeks, two of which resulted in ambulance rides and hospital visits.  We don’t know yet why she’s suddenly having them more and more or what is triggering them.

I’ve spent my life planning out my next step.  When things happen, I want to know what the game plan is.  Well, here is my game plan- wait.  We take life a day at a time, sometimes an hour (or a minute) at a time.  We cannot predict what comes next.  We prepare as much as we can- we keep our appointments, administer the meds, document the changes, keep the bags packed, develop our emergency plans, keep her within arms reach 24/7 (yes, she even sleeps with us now), avoid germs as much as possible- but the truth is life is unpredictable.  The only thing certain, the only constant, the only assurance we have, is that God is faithful.  He has plans for our good, and for Harper’s good, and those plans are to ultimately bring Him glory.  So, we learn to be patient, we learn to wait, we learn to accept, and we learn to trust.

Wait patiently for the LORD. Be brave and courageous. Yes, wait patiently for the LORD.
-Psalm 27:14

But they who wait for the LORD shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint.
-Isaiah 40:31

Trust in the LORD with all your heart
         And do not lean on your own understanding.
In all your ways acknowledge Him,
         And He will make your paths straight.
-Proverbs 3:5-6