This journey with epilepsy, it is a vicious cycle.

I sometimes hesitate to label Harper as having epilepsy, although she certainly has earned the label.  I struggle with labels, and her case is such a complicated one that there really is no one label that best describes her.  I don’t know which issue she has that is greater than any of the others.  She has the cysts.  Those caused the hydrocephalus that led to brain compression and surgery and hemorrhaging and dead brain tissue.  And then came the seizures, but the seizures so far have followed no distinguishable pattern, so we aren’t exactly sure where they are coming from or which of the underlying issues is causing them.

And then you have all of the repercussions of all of those things that affect daily living to some extent, and trying to discern what is what- is she just misbehaving?  Is it sensory?  Is it a seizure?  Is she reacting to medications?  Is there something else going on that we haven’t picked up on yet?  Some days it feels like a little too much.

Harper had been doing quite well, and had made it several weeks with no seizure activity.  It was fabulous.

But they came back.

And that’s where we are this week.  She had two major seizures in the course of a week- those are the seizures that look like true seizures, with body convulsions and loss of consciousness.  Fortunately, neither lasted longer than four minutes and she did breathe on her own through those, so we did not have to administer rescue meds or call an ambulance (blessings counted!).

However, since those, she’s been having some kind of spell that seems to be a different type of seizure, and these spells are coming daily, sometimes more than once a day.  These spells involve stomach pain, loss of vision, and great fear for Harper… heart-wrenching to watch as a mom.

With these spells we’ve also had some behavioral issues… Mood swings, can’t sit still, agitated, aggressive, lots of screaming for no apparent reason… and then she’ll be just as happy and sweet as can be!  It’s like riding a roller coaster all day- but with a house full of girls, we are used to that!

We’ve been consulting with her neuro at Duke, and have increased meds again.  Once school gets out for everyone we’ll make a trip up there to see neurology and see if the increase is helping, and there is talk of having to be admitted for EEG monitoring again.  If that is the case, we’ll have to make some decisions about doing it at Duke or going ahead with the study Johns Hopkins wanted to do.

I’m feeling a little worn this week, but tonight the Lord led me to Hebrews 12.  I don’t typically read the Message version, but for some reason it popped up on my phone and I love the wording in those first few verses of the chapter: Do you see what this means- all these pioneers who blazed the way, all these veterans cheering us on?  It means we’d better get on with it.  Strip down, start running- and never quit!  No extra spiritual fat, no parasitic sins.  Keep your eyes on Jesus, who both began and finished this race we’re in.  Study how he did it.  Because he never lost sight of where he was headed- that exhilarating finish in and with God- he could put up with anything along the way…

What a charge- get on with it.  Never quit.  Keep your eyes on Jesus.  He did it.  He is my example of how to truck on.  He is my reason to truck on.  And He is the strength I need to truck on.

Let’s truck on, friends…

I stood over the stove preparing dinner for my crew this evening, in the middle of a so-very-messy house, still in my pajamas from last night (which also means unshowered and bare-faced), and I thought my heart just might explode with joy.

There is astonishing beauty in normalcy.

The sound of the washer means our clothes are being cleaned and we aren’t living out of suitcases.

The smell of that chicken baking means a home cooked meal tonight, together as a family.

That cartoon blaring in the background is a result of a blissfully lazy day at home, allowing my little bit to rest and recuperate in peace.

And those girls giggling together at the kitchen table over games and art… the most precious sound in the world. Love and togetherness.

If you haven’t yet heard, Harper’s surgery went amazingly well. She just had to stay the one night at Duke, and now we get to complete the recovery process at home. She had a few quirky little things pop up (a little fever, some low blood pressure, some weird drainage, some vomiting), but she has pushed right on through- and hasn’t had any seizure activity!

We will be quarantined the next week or two as she recuperates- we want to minimize stress on her body, encourage lots of rest, and avoid any germ exposure to keep her strong and healthy and seizure-free. If I’m slow on responding to messages, I apologize in advance- we are doing round-the-clock nursing care right now, which means getting up every three hours, plus she’s a bit more demanding at the moment, so our schedules are pretty wacky this week.

We are so grateful for all of your prayers and encouragement- we were feeling pretty anxious, but once again, God superseded our expectations! We are blessed to have all of you on Harper’s “team,” and blessed by these beautiful, normal moments together ❤️

I’ve been procrastinating on writing this update.  My mind and my emotions are all over the place these days, and while I often use this blog to process through these things, putting it all into words makes it real, and I haven’t been quite ready for that yet.

Harper’s tonsillectomy is scheduled for tomorrow afternoon at Duke.  This is a good thing, it will help her in the long run, and for kids this is not a major surgery.  And, let’s be real- compared to her last surgery this is a piece of cake.  We’re talking removing tonsils, not operating on her brain!

Yet, as parents, we are nervous wrecks.  When your child has crazy things growing on her brain and has a tendency to have life-threatening seizures, any surgery is a big deal.  I get nervous just with her going to sleep on her own at night!  (And if you wonder why, just research SUDEP).  There are many factors that can increase Harper’s seizure risk, and many of those will be an issue tomorrow (lack of food, out of routines, stress, pain, etc.). Also, Harper has not been placed under general anesthesia since she started having seizures, so no one really knows how her body will react… and unknowns are scary.

I know the best way to combat fear is with the word of God, so I have my go-to Scriptures loaded and ready.  I also know we have some amazing prayer warriors on our team who will be praying us through this next week, so thank you ahead of time for that!  As you are praying, here are some specifics we know to pray for right now:

• PEACE!  Obviously, peace for us as we prepare and wait, and peace for Harper.  She is more and more aware of what is going on and is developing quite a fear of hospitals.  She has even started crying when she sees someone on t.v. in the hospital!
• Dealing with no food… Harper has to stop eating Sunday night, but her surgery isn’t scheduled until 2:40 Monday afternoon.  That is a long time to go without eating!
• No seizures!  Harper has had seizure activity in the past week, so we need that to stop, and we need her to have no seizures during or after surgery.
• Easy IV access (this has been an issue in the past, but hopefully not this time!)
• No vomiting… Harper has still been vomiting at night on a weekly basis.  Obviously, she needs to avoid that during the tonsil recovery period!
• Medications- We need her to continue taking her meds post-surgery with no problem.  One is a chewable tablet and the other is a liquid, so hopefully she will not have trouble swallowing during her recovery.

That’s plenty to pray for, I do believe.  We trust that this will be a smooth process and all will go well, and we will be able to report great things!

Whew, what a day. By 7:00 this morning, the big girls were ready for school and dropped off at their grandparents (tears and all) and Harper and I were on the interstate, booking it to her appointment with Duke Otolaryngology. For those of you who do not know, this was quite a feat as I am quite possibly the worst morning person on the planet!

The trip to and from was eventful in and of itself, between dealing with traffic delays that made us late to the appointment and a flat tire on the way back (not to mention the battles over riding in a car seat and the intermittent screaming spells 😳). BUT, we made it all in one piece!

So here’s the lowdown on the appointment… first, this was the same ENT we saw back in October who was adamant that Harper did not need to have her tonsils removed. She felt strongly that the surgery was not worth the risk, so I was apprehensive about today’s appointment. We were walking in with a recommendation for surgery from another specialist and I wasn’t sure how she would react to that.

To my surprise, everyone was on the same page. She read through the notes, looked at the sleep study results from December, inspected Harper’s tonsils, and said that it’s time. However, she then went back to Harper’s records, medical history, and brain scans, and said that her team cannot do it. There is a heightened risk for seizure patients with anesthesia, so even a common tonsillectomy can be a major ordeal. So she is referring us to another ENT at Duke, but is going to personally contact him and debrief him on Harper’s case in hopes that he will agree to schedule the surgery and not require us to make yet another trip up there for another consult first. We are praying this is the case so that we can move on forward with this and not have to make a separate trek up that way just to meet someone.

They are thinking this will be an in-patient surgery given our situation, but we will see what the final verdict is on that. The goal is that this will help some of Harper’s sleep issues- it seems that these breathing issues at night may be preventing her from getting into good sleep patterns, so she isn’t getting much REM sleep. This can cause issues for her during the day as she’s more tired than she should be, but can also lower her threshold for seizures. And it’s also a concern to have these kinds of sleep disturbances in combination with seizure activity at night.

So that’s where we are on that right now. We’ll be waiting to hear back from them about which doctor will take her on and go from there. And now this worn out mama is going to try to get a few hours of sleep in before our Little Love starts her middle-of-the-night wakings!

Well, March’s claim to fame is “in like a lion,” and it has certainly lived up to that in this house! The last couple of weeks have been yet another adventure with Harper. She started having some new symptoms that were totally unrelated to her seizure issues, and we went to the doctor for a suspected UTI (again). In addition to those symptoms, she has also been having spells of terrible abdominal pain every night and vomiting (not viral or illness-related). This has been happening for over a week now, but no real indication yet of what the cause is.

We also finally got word back about the sleep study Harper had done back in the fall and had to see a sleep specialist neuro from Duke last week, who has referred her for surgery to have her tonsils and adenoids removed. She has had three sleep studies done and they’ve all been borderline, but on this last study she was only in REM sleep for 5% of the night, and her tonsils have gotten larger. The concern is that even her mild apnea can cause additional risks with her seizures, so it’s better to go ahead and have the surgery. It will be done at Duke so that the neuro team can be paged if there are any issues, and we will make another trip this week to meet with the ENT and get everything lined up. While we are there they will also do lab work to try to pinpoint if her new abdominal issues are related to her medications.

So, Miss Priss has had us on our toes. Between all of these appointments and labs, plus therapy, and Daddy being gone on military orders, and keeping up with her big sisters, and school and church and life in general, we are ready for March to march on out of here!

Yet, through it all, there is a peace that surpasses all understanding. I don’t know how people go through life without Jesus! As crazy as our days have been lately, they do not compare to the battles so many others are fighting right now. My heart has been broken over the pain so many of my precious friends in Christ have been wrestling with in recent days. Loss of life, loss of love, loss of jobs… brokenness and burdens that make no sense in our human understanding.

But we hold on to the hope found only in a sovereign God. Isaiah 43:1-2 states: But now thus says the Lord, he who created you, O Jacob, he who formed you, O Israel: “Fear not, for I have redeemed you; I have called you by name, you are mine. When you pass through the waters, I will be with you; and through the rivers, they shall not overwhelm you; when you walk through fire you shall not be burned, and the flame shall not consume you.”

That is some good stuff. We have been created and formed by the Great I AM. He commands us not to fear. He has redeemed us. He calls us by name. He says we are HIS! He intimately knows us, knows our thoughts and fears, our feelings and emotions, our strengths and our weaknesses. He knows our insecurities and short comings and the ways we have failed- yet He still calls us His own. It doesn’t matter who we have or don’t have in this crazy world- we are HIS.

And He promises to never leave us. He sticks around, no matter what. When we are utterly overwhelmed and feel like we are drowning in our sorrows or in our busyness or even in our loneliness, He is there. “I will be with you.” And when we are put to the test and think we cannot take one more thing, He protects us. “You shall not be burned, and the flame shall not consume you.”

Tonight I am so thankful for the promises of His Word. I am grateful for a God who doesn’t desert me, who walks with me through the trials of this world, and who gives me the assurance of a beautiful eternity in His presence regardless of what my present circumstances look like. We shall not be consumed!

This is the face of a warrior, a survivor, an overcomer, a miracle from the Most High.

Five years. Five years of unknowns and doing the unexpected. Five years of heartaches triumphed by joy that only God can bring. Five years of ups and downs and round and rounds. Five years of perseverance and determination and believing. Five years of growing and trusting and holding on.

We didn’t celebrate with a grand Pinterest-worthy party. In fact, no party at all. In five years we’ve learned what works and what doesn’t, and lots of noise and excitement and people just doesn’t work so well.

So, she had her Peppa cake “with fire on it” (the candle) and rainbow sherbet at home, and I’ve never seen a greater smile. And I’m overjoyed to listen to her bubbly giggles and watch her dance around the house in her mismatched clothes and crazy hair. It’s been a simple day full of simple joys, and I’m grateful for every moment.

Whew.  Like the rest of the world, we are in the throes of chaos and busyness, but I wanted to do an update for our prayer warriors out there with some specific requests…

First, Harper completed her feeding study and sleep study at Duke, so those are behind us.  Feeding study was a breeze, as we expected- we know she can eat!  The purpose was just to rule out swallowing issues as we move forward, and we did that.  The sleep study was nothing short of a disaster.  Harper is now aware of what it means when we say we are going to Duke, so all the way there she asked me why we had to go and proceeded to tell me that she is not going to Duke anymore.  When we arrived and she saw all of the monitors and wires, she completely flipped out, and thus set the stage for one of the longest nights of my life.  We won’t get the official reports from that until sometime in January, but due to the fact that she actually slept very little and the fact that they were not even able to place all of the necessary monitors on her, we don’t have high expectations of valuable information coming from that study.

Harper has been doing amazingly well with her medicine transition.  We are completely off of one of the older meds, and the change in her personality has been remarkable.  She has a new-found joy now that she isn’t clouded by that downer drug!  I love it.  We are still in the process of working our way into the new med- it can cause some serious side-effects so we have to take it very slow, but we are about halfway into that process right now.  She takes it like a champ, but we are seeing more seizure activity.  She’s had two clusters in the past week already, but we are hoping that will calm down as her dosage continues to increase.

We are preparing now for our (hopefully) final trip of the year.  It’s time to travel north for the neuro-psychological testing at the Kennedy Krieger Institute (through Johns Hopkins).  We do have some specific prayer requests regarding this:

1. Traveling safety, of course!
2. Harper to be a happy traveler this time around.
3. Harper’s cooperation for a full day of testing (Monday).
4. Valuable data and results that will help us in preparing for future treatments as well as making school decisions.
5. Peace for this mama’s heart… It is getting more difficult to push through these appointments as she gets older and protests more- I want to do what’s best for her, but I know she is over it, and we’re all a bit weary.  We are also hoping for good information from this testing, but with that comes the chance to hear things no one really wants to hear.  It’s difficult to explain, but you can know things about your child and still find that it hurts to hear someone else point it out or tell you problems they see.

Now, along those lines, I’m going to throw something out there.  We are very open about this journey we’ve been on for almost five years now.  We don’t hold back from telling people what’s going and what we go through, and we do this so that people know exactly how to pray, but also so people can see how God is at work, and to possibly encourage someone else out there who may be facing difficult circumstances.  It can be helpful when you’re struggling and wondering to know that there are other families out there who get that struggle, that you aren’t alone.

However, when you put it all out there like we do, you subject yourself to all kinds of comments and opinions and advice.  We have heard quite an array of things over the last few years, but there is one discussion that I would like to advise against, and that is our faith.  It has been insinuated by some that perhaps our daughter has not been completely healed yet because we don’t believe enough, because our faith isn’t strong enough, because we don’t speak it and claim it enough, because we seek the advice and guidance of doctors and listen too much to their opinions, etc, etc.

I know that most people are truly, genuinely well-meaning in their words to us, but these kinds of words cause harm.  They cause us to feel guilty, to question things we don’t need to question, to doubt… to just feel beat up a bit.  Believe me, there have been times that I have wondered if we are lacking in these areas, that I have felt as if my faith wasn’t strong enough, that I have questioned what I could be doing differently to change things for my daughter.  But those are very personal spiritual battles, conversations that I have with the Lord, and not things we need to have pointed out to us time and time again.

To clarify, this is what I believe.  I believe the Bible to be the inerrant Word of God, that every word in it is divinely inspired and true.  I believe that when God makes promises, He keeps them.  I believe His plans are for good, that He never leaves nor forsakes us, and that He can bring beauty from ashes.  I believe He loves me and my family enough to send His own Son as a sacrifice for us.  I believe He is omnipotent and able to do absolutely anything, far beyond what I could dream.  I believe He is a miracle-working God- I’ve seen Him do it!  I believe in the power of prayer- I’ve witnessed it firsthand.

I also believe in the omniscience of God, and know that He sees a bigger picture than I see.  He knows more about what I need than I do.  He has a greater purpose than I can understand.  I do believe He could absolutely heal my daughter completely and totally with a single word.  He could speak, and the cysts on her brain could disappear and the extra fluid could dissipate and the damaged areas could be like new, and she could never have another seizure.  But that hasn’t happened yet, and I don’t feel that it’s because of a lack of faith on our part.  Rather, I believe God is still writing our story.  He is using Harper to bring glory to His name in ways only He can do.  He is drawing us nearer to Him on a daily basis, reminding us of what this life is all about and what our purpose here is.  He is still at work, and just because His plans don’t match up with our plans doesn’t mean that we believe any less.

So, if you see a person in the midst of a battle, and you think that maybe they’re there because of some spiritual inadequacy, be cautious with your words.  Make sure that you have consulted with the Lord before passing along your wisdom, and season your speech with grace.  There are times when we need to speak hard truths, but it’s important to do that in God’s timing and with love.

That’s just my two-cents from someone who has walked that road.  We are ever grateful for our encouragers and prayer warriors.  Life is not always easy, but God is always good.  We’ll update you next week on our trip!

You never know what a week may hold when you’re parenting Harper. We are currently on the road back from a day at Duke, a trip that was not on our agenda 48 hours ago. But when the neurologist contacts you and says she wants to see her ASAP, you jump in the car and go!

So, we made the trip today and met with the neurologist to discuss treatment options for Harper since we have having issues with medication consistency. Harper has been on two medications for a while now, and one of them she has been on a particularly long time. That’s the one that we’ve been having trouble getting in her consistently, and the doctor thinks she has developed an aversion to it.

When Harper had the extended EEG study, they had told us that we would be getting close to running out of medicine options. However, we apparently still have some options on the table, and we went over those today. For now, a combination of two meds seems to be working well for Harper when she takes them like she should. The problem will come if we end up needed a third medicine, but we aren’t there yet. At this point, there are some others medications that work like the ones she is on, so we can switch them out. We discussed the different medicines and how they are offered, and their side effects, and decided on one to try. The good news is that it is offered in a chewable tablet and a disintegrating tablet, so we should have no trouble getting it in her. The bad news is that it can cause Stevens-Johnson syndrome, so we will have to introduce it slowly and watch her closely.

This is our immediate change, but we have other options they want us to consider as well. The ketogenic diet is one possibility, but not a great option for Harper in this season- it involves hospital stays and some understanding on her part that she just isn’t ready for, but is something we could consider way down the road when she’s older.

The other two considerations we are supposed to think about are both surgical. There is still the possibility that they could remove the section of her brain where the seizures are starting if they can pinpoint where that is. While the neurologist feels this is a good option, for Kirby and I this is the least viable option right now. There are a lot of ways that could go wrong and it isn’t guaranteed to work, and we are not willing to consider it until they have more data and can persuade us that the benefits outweigh the risks.

The second surgical option is one we haven’t heard before, and the one the doctor is highly recommending… Vagus Nerve Stimulation Therapy (VNS). They would implant a box in Harp’s chest with wires wrapping around her vagus nerve. It’s similar to a pace maker but for the brain, sending electrical pulses to the brain to control seizures better via the vagus nerve, which runs through the neck. There’s also a magnetic tool that we could use to stop a seizure without medication. It seems to be a viable option, but there is always some hesitancy on our part when they talk about putting things in our daughter’s body.

We have some big decisions to think about, and in the meantime we’ll be going through another transition period with medicines. We also have a feeding study scheduled in a couple of weeks at Duke, then a sleep study at Duke, and then a trip to Baltimore for neuropsych testing with the Kennedy Krieger Institute through Johns Hopkins. We also think we are going to go ahead and get on the schedule for the big EEG testing with Johns Hopkins so that we will have all the information we need to make these decisions.

As always, we appreciate everyone’s prayers ❤️

Sometimes I write these posts to give you guys updates on what’s going on with Harper or to share specific prayer concerns.  Other times I write to just process through my own thoughts and emotions.

Tonight is a processing night.

We have been in a really weird place with Harper lately.  I don’t even fully know how to explain this season we are in.  You see, Harper’s case is a bit complex.  (Okay, a lot complex!)  Most often our immediate prayer concerns are due to seizures and that’s what we share, but there is much more to her situation than just seizures.  Those are certainly the scary part of our journey, but they are just one part.

As far as the seizures go, we made it another three days after my last post before she had another seizure, which gave us a total of 17 days seizure-free.  That was a pretty good spell!  She had a couple of small seizures that day, and then we made it 11 more days, which brought us to last week.  Last week she suddenly started giving us a fit over her medications again, which resulted in a rough morning of cluster seizures and a round of our back-up strong medicine.  Not much fun.

Unfortunately, other issues have escalated with Harp in the last week.  We are finally getting her medicines in her, but we are only able to do the liquid versions right now, which means she doesn’t get the benefit of the time-released tablets.  Praise the Lord, she took the liquids well today (thanks to some Pepsi bribery!), but depending on her mood, that process can take anywhere from just a few minutes to 2-3 hours- and we go through that twice a day.

Behavior and sensory issues have been intense this last week as well.  Moods have been swinging from one extreme to the other with no warning.  We have had long periods of her not using words to communicate, just screaming and growling.  She wants to be alone one minute, then is trying to crawl in my skin the next.  She’s not handled being around other children well for several days now, becoming angry and aggressive with them.  She’s not able to sit still- in and out of chairs, rocking in place, constantly moving.  Normal, every day activities have been particularly challenging- from having lunch out in public (she and I ended up sitting behind the restaurant on the sidewalk alone while everyone ate) to riding in the car (thankful for a friend loaning us a DVD player to try!).  Her fits are far beyond a typical tantrum, and we are constantly trying learning new techniques to try to help her regulate.

It hasn’t been an easy week, and as a mom, I just get sad.  It hurts my heart to see her struggle so much with normal things.  I don’t know what to do for her- I try to push her outside of her comfort zone to help her learn to cope and try to stretch and grow her, but every once in a while I just want to put her in a bubble away from the world and let her be.  We did that today.  She woke up this morning with crazy wild bedhead hair, gripping a baby doll in her pudgy hands, and she was all smiles and giggles and snuggles in my bed.  And I decided to just put a pause on life for the day and not push her.  She stayed home from preschool and we watched cartoons and played with babies and colored whatever she wanted (she loves to draw and color!), and it was lovely.

So, to you moms out there who are weary and tired and don’t know what move to make next, maybe you need a day of snuggles and cartoons and crayons.  Sometimes it’s okay to just hit the pause button, to take some time to rest and process.  Will it magically fix all of your problems?  No way.  They’ll still be there.  Does it mean you’ll have it all figured out the next day?  Nope.  I still don’t have a clue what to do next or how to make things better.  I’m still praying that the Lord gives us wisdom and discernment and provides us direction for where to go next.  But today I enjoyed a day with my girl, and she enjoyed not being pushed so hard for a few hours.  I’ll count that as a success.