Regulating the blog posts…

Many of you (if not all of you) know that our crew is getting ready to take a huge leap of faith and venture into the unknown to answer God’s call. As we have been saying our “see you later”s and preparing, I’ve had several people ask if I’ll continue to blog through our new journey… so I realized that maybe I should be a bit more present on here if I’m going to do that!

So, here is a long overdue update in an effort to catch everyone up to speed as to what exactly has gone down in the last couple months and what exactly we are up to!

Back in May, I finished the school year as a teacher and packed up my stuff, knowing that the Lord was calling me out of that season. I was heartbroken, because teaching has been my passion since I was young and in the last few years I’ve been able to couple that passion with my passion for ministry and serving Jesus, and it was a wonderful thing. But, God showed me that just because something is good doesn’t mean it’s for you in that season, and after a hard health year (for myself plus balancing Harper’s needs and my role as a wife and mom), I knew I had to let go.

Now, I thought that meant I was going to enter a year of rest and calm and peace. I had it all figured out- I was going to send the kids to school and have all this time to myself to focus on my walk with the Lord and just be still, and it sounded so lovely. (And I’ll be real- it meant I was looking forward to laying low and not doing much- lazy!).

Then in June we took a small trip as a family, and on the ride back my husband had me searching through ministry opportunities for his friend to see what was out there. We were ready to get home, and I had just said how happy and content I was to be living where we were and how I really didn’t want to move- ever.

As I was reading through these jobs with someone else in mind, one caught my eye… it was a campus pastor position, but they wanted military experience, which was unusual. I skipped on past it, but the Lord circled me back to it, and I read it to Kirby. Then we saw the location- Twentynine Palms, CA, right outside Joshua Tree National Park, where we just happened to visit a few years ago for our anniversary. (Side note- California has been an ongoing joke in our family for years now. Kirby has been for military work and fell in love with it, so the girls always hound him about “Cali.” We’ve been buying him shirts, posters, even a map pillow- but all in jest, never imagining we would go there!!)

We tried to convince ourselves that we would never move to California, but God just would not let the conversation die. So we looked into the church and found that it was to be a satellite church for a much larger church under a very well-known pastor- and Kirby convinced himself that he didn’t have a shot in the world at that kind of opportunity!

But God. He didn’t let us rest in our excuses, and we decided for Kirby to at least put his name in. From there the process flew. He had multiple calls and interviews, and in no time they were making arrangements to fly our family out to meet everyone in person and see the community.

At various points we pondered stopping the process. It was big and scary. But our motto has always been to keep going until God closes the door. So we traveled to California, all the while looking for doors to close.

The doors didn’t shut. Instead, God sent reminders of His presence and provision every step of the way. We met with a few people from our new congregation, and just in that group of 3-4 people we met a nurse, a junior high teacher and track coach, a parent of a child with special needs, two people with hearts for youth, and a lady with family in North Carolina. They were so welcoming and it just felt like home. At one point we stood in the courtyard in the dirt and hot sun and realized it was just like a place Kirby and I had visited on a mission trip in Cambodia years ago when we first felt that little tug to do something more. It was a feeling of coming full circle.

Every other concern we had was null and void. The numbers game played out perfectly. Our house sold in days. We were able to put a contract on a great house in a great location out there. We found a moving company with ease. We ended up getting an RV for travel out there and found a temporary house to rent until ours closes at just the right time (it wasn’t there when we first looked, and then showed up right when we needed it to!). Harper’s neurologist referred us to a neuro program out there, and when we researched it we discovered that it happens to be one of the top epilepsy centers in the US.

Most importantly, we see the fields ready for harvest. We are going to a dry and thirsty land (quite literally as we’re going to the desert!), and the opportunities for God to work are endless. There is a community in need. There is a large military base of men and women serving our country, of husbands and wives trying to navigate rocky roads, of families being moved around and separated by deployments. There are people who need the hope of Jesus, and we cannot wait to go share it with them.

No, this season doesn’t look quite like what we had in mind. But God’s story is always so much better, and we are honored and humbled to be used by him, not just individually, but as a family. The best is yet to come…

Behold, I am doing a new thing; now it springs forth, do you not perceive it? I will make a way in the wilderness and rivers in the desert. (Isaiah 43:19)

When you don’t know what to pray…

I opened my Bible app last night before bed and the verse of the day was Romans 8:26…

“In the same way the Spirit also helps us in our weakness, because we do not know what to pray for as we should, but the Spirit himself intercedes for us with inexpressible groanings.”
‭‭Romans‬ ‭8:26‬ ‭CSB‬‬

I’ve read this verse dozens of times, but it hit me differently this week. See, I tend to gravitate to that first part of the verse- the Spirit helps me in my weakness- because that reassures and comforts me. I know I’ve got weaknesses, and knowing the Spirit helps me in those is life-saving some days.

But it was the rest of that verse that gave me pause this time, about not knowing what to pray for as we should. One version states it as not knowing what God wants us to pray for.

That’s what stopped me.

For over eight years, I have been praying various things over Harper. The concerns arise, the diagnoses are given, the needs are presented, and we pray specifically. And as we’ve done so, we have seen God move and work and answer, sometimes as I long for, sometimes not really as I wanted, and sometimes far greater than I could have imagined.

But I have felt a bit stuck lately, not knowing quite what to pray. Harper overall is doing well. We haven’t seen a seizure during the daytime since February. She stayed healthy this year with no infections or hospitalizations or crazy episodes of any kind, which was absolutely amazing. She’s staying steady with her neuro and cognitive development, still needing therapies (we’re adding physical therapy back into the mix so she’ll have four total appointments a week) but moving slowly forward instead of backward. Progress!

And we got the report today that there is improvement with this latest treatment for her ESES… a lot of information, but basically her overall percentages dropped from 100% to 80% on average with more localized activity, which still constitutes an ESES diagnosis, but is finally improvement!

Yet with all this positive feedback, I find myself not satisfied. The news is good. She’s well enough. But… I have this “but” lingering over me.

Because well enough is not good enough for me.

I have wrestled with this for years now. I don’t want good enough. I want the best for my daughter. And I don’t want some improvement. I want total healing for her body! While I know I should be pleased that we have improvements (and trust me, to an extent, I am!), I am not ready to settle for a 20% decrease with LOADS of medications that have loads of side effects. I want to see a complete elimination of this disorder. And then I want to see a complete elimination of all of these medications she has had to have pumped in her little body for years now.

Yet at the same time, I know to praise God for any improvements. This is the first improvement of any kind we’ve seen on an EEG in the last year! I know to thank Him for any treatment that He has provided that helps her, even when I don’t like the side effects because they are saving her life and protecting her brain from further damage. And I know to shout of His goodness NO MATTER WHAT, because regardless of what happens with Harper (or any of us!), He is good. He always has been and He always will be, and He owes me nothing.

So I do not always know exactly what to pray.

But praise God for this reminder, that the Spirit helps me in my weakness, and intercedes for me when I am at a loss of what exactly to pray. So often I think that I have to have the words for everything, that I have to know exactly what to say and how to say it, and I feel like I’m failing when I don’t.

But it’s not about me! He hasn’t left me to my own devices. He doesn’t expect me to have all the answers. He knows my weaknesses, He knows my heart, and He loves me enough to not leave me stranded.

Today, that is news to celebrate.

And so, we celebrate, we thank Him for what He has done, what He is doing, and what He will do. And we keep talking to Jesus, even if we aren’t exactly sure of what to pray… knowing that when our words fall short, the Spirit is interceding on our behalf.

Good Friday updates

I haven’t written in a long time. I have tried to think of why, but I’ve struggled with words. Usually this blog is my place for updates, but also a place for reflection and processing through the hard. But as I’ve come here to do that time and time again, I just haven’t been able to find the words. It isn’t that I have lost faith or failed to see the goodness of God, because it is fully that grace and hope that keeps me moving these days.

Rather, it has just been a dark season of weariness, of one hit after another after another that has exhausted me and left me just clinging to Him without the words to express what I’ve been feeling or going through. It has taken every ounce of energy in my soul to wake up and keep moving and stay focused on Him, and I haven’t had it in me to process or share or try to encourage anyone else (which, now that I verbalize that, sounds horribly selfish and prideful, but sometimes we need to confess the ugly and bring it to the light!).

To summarize and update for those who aren’t aware of what’s been going on… Harper added IVIG treatments to her IV steroid treatments, and none of it worked. Like, at all. The treatments were hard on her body and hard on our family and we did it all for nothing, so it was devastating news. She has a new neurologist now, and is on a new treatment plan that will lead to high doses of Valium every night, and we are very early along in this process. It was hard to accept and it is hard to watch her struggle cognitively, but there is a peace now as she is happy and is taking a much needed break from hospital visits for a few months.

However, in the midst of all of that, we got hit from a different side when I was diagnosed with a crazy form of cancer. It has been a roller coaster ride as everyone has tried to figure this thing out, and I don’t know that we yet have a clear understanding of what exactly I have or what the prognosis is- we thought we did, but at every turn something else pops up, so we are in a state of constant waiting right now. It has been a whirlwind of scans and labs and biopsies and surgeries and complications, with things constantly changing and life spinning in a totally different direction than anyone expected.

I have now had four weeks of pain and nausea and sickness and bed rest that I never in a million years anticipated, and more unknowns looming in the future as we wait for second opinions from Duke and more procedures for other parts of my body, all while praying Harper’s new treatments work this time with minimal side effects, and I have just been sitting here in my bed alone with the Lord wondering WHAT IN THE WORLD IS GOING ON!

And today is Good Friday. As I was reading the Word today and reflecting on the crucifixion of Christ, it hit me in a different way. I’ve always seen the darkness of the day and felt the heaviness and pain and sorrow of the Savior of the world dying on that cross as His followers helplessly watched the events transpire, fearful of all the unknowns. But oh, how that has resonated with me in this season! That feeling of helplessness, of wondering, of fear, of confusion… of knowing what He said, but how the current circumstances just don’t seem to connect with what He said. His disciples, who no doubt loved Jesus, but in the dark were struggling against doubt and shame and loneliness and heartache and just. not. understanding.

And as I read and empathized so much (like to the point of weeping) with those confused Jesus-lovers on crucifixion day, these words of Jesus from the cross jumped off the page: “‘Eli, Eli, lema, sabachthani?’ that is, ‘My God, my God, why have you forsaken me?'” (Matthew 27:46)

Now, on the one hand, we can see the reference Jesus is making here to Psalm 22, which is a Messianic Psalm that parallels the crucifixion of Christ. This was a Psalm the people knew, and the events were playing out just as they had been foretold. I love that even at the point of death Jesus is testifying who He is, pointing people to Truth.

But more so, I love the message I see here from Jesus to those who love Him- He understands. This is so important for us as believers to grasp as we form a relationship with Him! The One who sits at the right hand of the Father making intercession for us is not unsympathetic to the pain and heartache we feel. He’s been there and He gets it. He knows what it’s like to feel alone and abandoned. He knows how it feels when the darkness is closing in. And He shows us that sometimes it’s okay to ask God, “Why?” Jesus knew the plan. He knew God was not abandoning Him. He knew it was not over. But He still cried out in that moment. It is okay to have questions and to cry out. It doesn’t mean that you love God any less, or that He loves you any less. God is fully able to handle our questions, and He is there for us even in the darkest of times… we may not be able to see or hear or understand, but it does not change who He is or where He is. He is good and He is here, always.

So on this Good Friday, that’s what I am seeing… the Good that outlasts the night… the Good that overcomes the dark… the Good that wins the victory.

He’s already won, friends 💜

IVs, Infusions, IVIG…

All the words and acronyms make my brain swim at times!

We’ve been at Duke this week for another round of IV steroid infusions. After today, Harper will have had a total of 8 infusions… but no progress yet.

We met with the doctor yesterday to discuss this, and he decided that it is time to move to the next plan of attack. And I say plan of attack because that’s exactly what it is- an attack. We are attacking this disorder with all we’ve got, but unfortunately this disorder and these treatments attack my girl’s body at the same time. We are experiencing loss, and battling side effects that are physical, behavioral, emotional, and mental.

The next weapon they’re pulling out is called IVIG infusions (immunoglobulin therapy). Basically she will get pumped with antibodies from other people, a treatment that is used for a wide range of diseases and is quite expensive (thank goodness for great insurance!). It has to be done in-hospital initially, so we won’t be trying for a home-health nurse now. If she proves that she can tolerate the treatment and they go long-term with it and put a PICC line in, we may revisit that in a few months.

The side effects of IVIG are pretty intense… dehydration, migraines, and flu-like symptoms, and we were taught about something called aseptic meningitis. It will be an all day process, and will be done in conjunction with the three-day pulse steroids that she’s already receiving. We have decided to wait and start this the first week of January.

While all of this can be a bit overwhelming (okay, a lot overwhelming!), we did learn from the neuropsychologist that while Harper is not currently able to learn and retain new information, she has not fully lost her cognitive skills as of yet, which is a huge blessing in the midst of this crazy ESES stuff! She is struggling with short term memory loss and a general sense of confusion and lack of awareness, but with enough prompting and one on one attention those previously learned skills can be pulled out. It’s like she has a box locked up inside her brain and we just have to help her find the right key to open it right now- some days the key is right there, and other days it’s jumbled up in a big drawer full of keys!

I would be lying if I said I never worry about what lies ahead for this little warrior of mine. I am aware of what this disease can take from her. I’ve seen the kids who lose their ability to learn or walk or talk. And I know all too well that it only takes one seizure to lose her this side of eternity.

That’s why I don’t take one minute with her for granted. I am learning every day to be grateful and praise God for every moment, and to make the moments count. We don’t live in fear but in gratitude for all He has done and all He has yet to do. Every moment of hers and every moment of mine is in His hands, and we’ll live those moments to the fullest, striving to bring glory to Him in the process. 💜

Rescue

I have recently found myself increasingly drawn to the pages of the Old Testament, to the stories of God’s people who feel lost or abandoned, burdened or heavy, weary or worn… and then the beautiful truth of how God rescues them time and time again.

What I love the most about those events is that in all of the rescuing there is a foreshadowing of the Rescue that God sent for all of mankind. Regardless of the situation, God always made a way, and now He has provided The Way through His Son.

I’m still clinging to that promise this week. My Rescuer is making a way.

I had a meeting this morning with one of the doctors on Harper’s team to go over results from her neuropsych testing. The news was good and bad, and a bit complicated- but isn’t that always the case with Harper?

The good news is that it does not appear that Harper has actually lost any cognitive skills yet as a result of the ESES. The skills she had learned are still in there. The trouble is retrieving them. She needs things presented and asked in a multitude of ways, and needs a lot of prompting and cues. Eventually she can get to the answer that is needed, but it takes a lot of time and effort.

That’s where we start getting into the bad news. While the cognitive skills are still in there, she’s struggling with her short term memory and basic awareness, so there is a lot of confusion and losing track of what she’s doing. She wanders, she drifts, she forgets, and she gets lost. She needs constant attention and assistance, and it is recommended that she have continual one-on-one guidance throughout the day.

However, even with continual one-on-one assistance, in this season the doctor said our goal is simply to keep reviewing those skills she had previously learned and do all we can to help her not lose those, because right now they do not think she is capable of learning and retaining new skills. Until the ESES and seizure activity get under control they feel her cognitive development will be at a halt. And as of right now, the current treatment plan has not helped at all.

We head back to Duke this week for another few days of IV infusions and a meeting with the neuro there. He is currently in charge of Harper’s treatment plan, and our doctor at Johns Hopkins reached out to him to share recommendations about adding IVIG treatments to her infusions as well as another daily medication to target the new seizure activity that showed up on the most recent EEG. We have not yet heard a response to the recommendations, so we are eager to hear what he has to say this week.

Here are some specific prayer requests for this upcoming week:

1. Safe travels to and from Durham (and back and forth between the hotel and the hospital each day!)

2. Easy IV access on Monday morning- calm nerves for Harps, no rolling veins, and just one stick!

3. Quick and smooth infusion Tuesday morning so we aren’t late for our meeting with the doctor

4. Good communication with the doctor on Tuesday- open hearts and minds on both ends, understanding, clarity, wisdom, agreement on treatment plans, overall cooperation

5. Minimal side effects from the treatments- last time we saw stomach pain and issues, intense fatigue, extreme mood swings and emotions, and headaches

6. Seizure activity to subside! SWI to decrease. Nightly nausea and stomach pain to end. Mood swings to level off. Peaceful sleep to come.

7. Make her brain come alive! Old skills stay intact and retrieval to come quickly. Memory to improve and awareness to increase. Confusion to dissipate and learning to rev back up!

8. And while you’re praying for Harps, we know many others needing healing from Him, including my dad and Kirby’s parents, as well as a family friend (Stacy).

Thank you for praying and believing with us 💜.

This week’s news…

Well, this week started with not-good news, and now it’s ending with not-good news. But let me just say this- I’ve heard the true Good News, and I know how this story ends, and one week of not-good news isn’t going to change that!

Now that I’ve made that clear, I’ll share the report we got in Baltimore this week on Harps. From a cognitive standpoint, she seems to have remained relatively stable in many areas over the last couple of months, but the final scores are not in. However, it is clear that her memory is being greatly impacted and there is increasing concern regarding her language processing and comprehension, so there will be more in-depth testing in the upcoming weeks.

The EEG results were upsetting. The ESES is still at 100%, indicating that the treatments have not yet been effective. She did say that sometimes it can take more time to kick in so not to give up yet, so we will keep pressing forward. However, the EEG showed new seizure activity that they’ve never seen in Harper before- new types of seizures in different parts of the brain. This has caught everyone off-guard and they aren’t sure why it’s happening, but it does confirm some of the activity I thought I was seeing and wasn’t sure about.

Our neuro in Baltimore is now reaching out to Duke to see about changing some things- a possible new medication for these new seizures (with some new, unpleasant side effects) and seeing if they can arrange another EEG when we are there for Harper’s next round of treatments in December. We’ll also get the more in-depth neuropsych testing done in the next couple of weeks to see what needs to be done to help Harper with her memory and language processing.

Right now I feel a bit numb and we are just in the throes of “go-mode.” Eventually things will slow down and I’ll process it a bit more and I’m sure I’ll be angry and frustrated and sad… but through it all there is peace in knowing that while we may be caught off-guard and the doctors may be caught off-guard, my God is never caught off-guard. He’s always known and He’s working all things for the good of those who love Him 💜

Praying for this week…

Hey friends… I’m doing something a little different this week after talking with one of our prayer warriors yesterday, and I’m listing out some specific prayer requests as we go into this upcoming week.

We are on the road right now for Duke so that Harper can get her steroid infusions to fight this ESES, which we will now be doing for three straight days every four weeks. That decision was just made at the end of the week after the doctor realized the first round of treatment did not prove to be effective, so we are going for a more aggressive treatment- assuming they can get everything in order to make that happen in the next 24 hours!

So, please excuse this lengthy list, but that’s just where we are right now. This disorder is complicated and it’s impact is not small, so I am learning to be more detailed and specific in my prayers as we navigate through 💜

1. PEACE… Peace that surpasses all understanding. Peace that comes only through Christ. Peace for Harper as she endures so many unpleasantries and asks so many questions. Peace for Maddie and Raegan as they watch their sister go through this and as they keep saying goodbye to us so we can make these medical trips (emotions are running high these days). Peace for Mom and Dad as we help each of our girls and each other through this, as we face so many unknowns, as we work through all the financial and scheduling details, and as we continue to trust God no matter what.

2. Ease of scheduling, especially in these next couple of months as we are working between Duke and Johns Hopkins and the traveling and trying to work in three days of infusions in a row instead of just the one that was scheduled.

3. Financial provision… God has richly blessed us every step of the way and we know He will not fail. We are so grateful for incredible insurance, but copays and travel expenses add up quick!

4. Easy IV access tomorrow! Harper had a very difficult time with the IV last month, and it took four tries to get a line in, even with ultrasound technology. We need tomorrow to be less traumatic for her!

5. Minimal side effects from the steroids.

6. The treatments to work. By work, we mean the SWI percentages to decrease. She is at 100%. We want her down to 20% or less. We want NO seizures and NO seizure-like activity.

7. No more regression. “Make her brain come alive!” May she stop losing skills, stop forgetting things, and fully remember again. We want to see God fully restore all the connections that have been broken in her mind. We want to see her understanding concepts, able to pay attention and focus, putting her thoughts and feelings into words and sentences in the appropriate context. We want to see full cognitive development again. We want the doctors to look at her and say, “This makes no sense- we cannot explain it- but Harper is healed and restored.” We want God to do what only He can do in a way that brings all glory and honor to Him.

I think that’s enough for one night… If you’ve made it through all that- thank you! We are grateful for our army of prayer warriors, and we are eager for the day when we can look back at this moment and say, “See what God did!” 💜

Picture courtesy of Chloe John Photography

Even if…

Hey friends.

It has been a week since I have posted any kind of updates anywhere regarding Harper. I’ve started this post three different times, but haven’t been able to bring myself to share it because it involves deeply personal feelings and emotions and struggles, and somewhere along the way it began to feel shameful to admit I had those feelings and emotions and struggles.

But a precious friend gifted me a much-needed book to read for my birthday, and in the first chapter the author (Lysa Terkeurst) talks about how Christians feel they cannot talk about or process through their disappointments. Then she makes this statement: “If the enemy can isolate us, he can influence us.”

Ouch.

I spent the last week isolated, and maybe someone reading this is in the same boat. Friend, don’t let the enemy isolate you- don’t hide your feelings. Own them and speak Truth to them. The very God that created this entire universe created you and all of your feelings, and He is more than able to handle your emotions. Know that you aren’t alone!

As for me? Well, not heeding my own advice, I wallowed, I wept, I wondered, I whined… I was sad, I was mad, I was guilty, I was burdened, I was overwhelmed, I was devastated, I was confused, I was hurt. It was a week of wrestling and crying and processing, but eventually also reminding myself of Truth and making choices… choices for Harper, choices for our family, and choices for myself… choosing to believe, choosing to praise, choosing to trust, choosing to persist, choosing to seek Him, choosing to find the gifts.

So, the news came back last weekend that the ESES has definitely returned. Technically a child is not officially diagnosed with ESES until their SWI is 85% or higher, but when we were first introduced to this disorder Harper’s was in the 50-60% range and then progressed. However, she had beat it and was down to less that 25%, clearing her from the diagnosis.

She is now at 100%.

This basically means her brain is misfiring all the time, and her seizure activity is intensified tremendously when she’s asleep. She is currently losing skills by the day at a rapid pace, and it has been shocking to witness. Her learning has nosedived, her behavior and emotions are a battle, and she is falling more and more as her muscles are being impacted again.

I won’t lie- I was in a very low place when all the results came in. It felt as if the healing we had witnessed had been taken back in some way, that the miracle had been revoked- even though I know that my God does not break His promises. My feelings have been hurt and I did not and still do not understand. At any moment I can look at her and see what she’s losing and the impacts this is having on our family and be mad or sad or frustrated.

OR… I can choose to see the good. And God has reminded me that He is good. He has reminded me that He is faithful. He has shown me that He has never failed, that He has never lost a battle, that He hasn’t stopped keeping His promises. He has surrounded us with a village that supports and encourages us just as much now as they did seven years ago when this crazy journey first began. He has placed women in my life that speak Truth over me when I am struggling to see it, who allow me to be real but refuse to let me drown. He has given us the strongest army of prayer warriors, an army that continues to grow and that stands in the gaps and calls out on our behalf when we have no words. He has led us to the best doctors for Harper’s care, and even orchestrated two hospitals in two states working together to meet her needs. And He has filled our girl with His Spirit in ways I never could have imagined.

BUT even if… He has reminded me that even if all of those things were stripped away… even if nothing worked out the way I think it should… even if we face more disappointment… even if I found myself with absolutely nothing and no one at the end of the day… He would still be good. Because at the end of the day, at the end of this season, at the end of this journey, what matters is not what He can do or has done for me, but Who He is.

So we keep pushing forward, choosing to praise, choosing to worship, even if, simply because HE IS GOOD. Just as Shadrach, Meshach, and Abednego said to King Nebuchadnezzar in Daniel 3, we know our God is able to deliver us from it, but even if He does not, He is still good.

Update…

It is Tuesday, and I’m fresh out of eloquent words or inspiration today. So this is just an update.

Harper made it through her MRI at Duke yesterday with minimal tears. She was incredibly brave, hopped right up on the table, followed directions, and stayed still even with tears streaming down her face.

Her neurosurgeon was very thorough in going through the scan and comparing it to previous scans to make sure that there was no kind of change anywhere that could be contributing to the seizure issues we’ve been experiencing lately- and everything is stable.

Because of how rough the last few nights had been, our neurologist at Johns Hopkins sent us from that appointment to the emergency department for a neurological evaluation- and from there Harper was admitted to the hospital for EEG monitoring.

It was a rough night. It took four attempts and six different people to get an IV started. The process of getting hooked up for the EEG took about an hour and a half. Alarms went off multiple times through the night as Harper’s heart rate would increase too high or her respiratory rate would drop too low. She vomited all over the bedding and her clothes around midnight requiring a full cleanup and change of everything. Mom and Dad alternated chairs to sleep in, sporting the same dirty clothes for way too long.

The EEG from last night confirmed what we suspected- the ESES has returned. We had to make some tough decisions today regarding treatment. Basically, we are down to the last resort. Harper is on one line of medicine at a high dose, so there is no point in adding the only other medicine in that class that treats ESES. It would be ineffective. The other medication that is best is the one that her liver can not tolerate, so we have ruled that out.

That leaves us with the least desirable treatment option that everyone has avoided- intense steroid treatments. The side effects can be pretty rough, particularly for a little person, but the doctors at Duke recommend using monthly IV infusions to help combat this rather than daily oral steroids.

The big decision came when we had to choose between Johns Hopkins and Duke. Obviously, making monthly trips to Baltimore for infusions would be problematic. Upon consulting with our doctor at Johns Hopkins, she recommended making the switch to Duke because of the law differences between states and it being difficult to secure IV infusions in Maryland for Harper, and felt the IV infusions would be better in the long run.

So we are now in the process of transferring neurological care back to Duke, securing an epileptologist here, and we are still in the hospital as she is being monitored and starting her first round of infusions.

By way of specific prayer requests this evening, here are some:

We find the right doctor here at Duke for long term care.

We have a smoother night tonight.

These steroid infusions work with MINIMAL side effects.

I can’t close without sharing something positive through all of this- every time Harper complains, I make her tell me something good that has happened, so it’s only fair for me to do the same!Here is today’s good news. First, last night as Harper was struggling and afraid while the nurse was drawing blood through her IV line, she began whispering to herself and pointing to her chest and the sky. I asked her what she was saying and she said, “God is with me.” The nurse stopped and rubbed her arm and said, “Yes, baby girl, He is and He always will be. Don’t forget that.” It was a precious moment between two sisters in Christ, and it made me so proud of my girl, because she never fails to tell anyone and everyone Who is in charge!

And the second positive… we had a doctor come in this morning and talk with us. She popped in a few minutes later and told us that she had been trying to place us and went back through our chart because she knew she remembered us- and she had been a resident on Harper’s case seven years ago when Harper was in the ICN here. She said we had made an impression on her back then and was amazed to see Harper all grown up today. 💜

The name of Jesus…

Hey friends.

It’s been a while. I would like to say that’s because everything has been just wonderful and beautiful, and for a period of time, it was. But lately it has not been so lovely, and I have been in strong denial of that and have not had the words to express what we’ve been dealing with.

Somehow putting it in words makes it more real and makes it more difficult to deny. I like to focus on the positive and speak life and believe for the best.

But, here’s our reality right now…

Last night we didn’t sleep. Harper was restless as she has been almost every night for the past month. She tosses and turns and thrashes and moans and groans and cries in her sleep, calls out for us in her sleep, makes odd noises, and wakes multiple times a night. That’s all a sign of the ESES returning. Last night was worse as she was waking to vomit, not because she was sick, but as a side effect of the seizure activity. It was a long night of heaving and muscle twitching and crying.

Her days are filled with more and more confusion. It can be small things, like at dinner last night when she was confused over a dinner roll on her plate and told me she didn’t know what to do with it. “Is this for eating? Does it go in my mouth? Do I use a spoon or a fork?” It can be bigger things, like forgetting to go to the bathroom or forgetting where the bathroom is. She’s repeating things over and over again, more so than usual. She forgets what we are doing or what day or time of day it is. At school she isn’t able to stay in her seat or complete her assignments, and she has forgotten skills that she knew just a month ago. She cannot be left alone for any period of time right now, so one of us is constantly shadowing her to keep her on track. Her tiptoe walking has gotten worse, her leg and foot muscles are steadily tightening, and her right ankle is now rolling under when she walks, all of which makes her fall more and more and tires her out more quickly.

ESES is a thief. It sneaks in and steals her progress and development so fast. It picks and chooses which parts of the brain it wants to attack and leaves other parts alone, and we’re left standing in the rubble wondering how it happens so fast. It is absolutely heartbreaking, and my baby doesn’t understand a bit of it. As I sat in the bathroom floor holding her in the wee hours of the morning this morning, she looked up at me with those big, brown eyes full of confusion as tremors shook her body, and it was all I could do to keep from sobbing. Because as much as I don’t understand, she really doesn’t understand.

It is in those moments that I struggle with the words to say or the words to pray. I try so hard to be strong for my girls and to teach them to be bold and courageous, but sometimes it is hard to model that. As I rocked Harper in my arms in that bathroom floor this morning, I just whispered the only thing I could over her again and again… “Jesus.”

Friends, sometimes we just need to speak the name of Jesus over our situation. In His name is all power and authority, healing, peace, promise, strength, comfort, light, life… through Him broken things are made whole, old things are made new, the rotten is redeemed, and miracles are manifested. His name is the name above all names- and I can think of nothing better to whisper in the darkest of nights.

For those of you who pray for our family, Harps has an MRI at Duke tomorrow to measure the cysts and fluid on her brain, and we are waiting for a word back from her doctor at Johns Hopkins about what steps to take next for the increased seizures and regression. 💜

Road-trippin’ to Duke