I don’t like for things to not be fair. I don’t like for people to hurt. I don’t like sickness and death. I don’t like sorrow and despair. I don’t like confusion and chaos. I don’t like fear and anxiety. I don’t like the dark and the unknown.
No one does, right?
Yet our world is full of it. Every day we wake up to something else heart wrenching or terrifying that we just can’t comprehend. We are bombarded with darkness at every turn, and it can be easy to feel overwhelmed and even hopeless at times.
This morning was one of those mornings where my heart was so heavy with those feelings of not understanding, of confusion and sadness and anger at situations that just seem so unfair. The question, “Why?” was the only one I could ask.
Fortunately, God doesn’t scare easy and He was well prepared for my big feelings this morning.
Once I unloaded all my heavy on Him, I picked up my reading in Colossians, which we are working through at church right now. And He led me to verses 15-20, revealing all of those characteristics of Christ, reminding me of who He is no matter what.
Who is Jesus?
He is the image of the invisible God.
He is the firstborn over ALL creation.
He is the creator of EVERYthing in heaven and on earth.
He is authority over all… the good, the bad, and everything in between.
He is before all things… regardless of what man thinks it feels.
He holds it all together… even when we think it’s falling apart.
He is the head of the church body.
He is the beginning.
He is the fullness of God.
He is the reconciler… even when it makes no sense and there seems to be no logical way.
He is the peacemaker… despite every war waged against us.
Now those words may not take away the pain. They may not even take away the wondering. But they point me to the truth of His character that cannot be changed by circumstances. They remind me that even when I can’t see it, He’s working. They remind me that even if not, He is good. They remind me that I don’t have to understand what He’s doing to trust Him. They remind me that He is working all things for the good of those who love Him. They remind me that His ways are not our ways, and that what He has for us is far greater than anything we can imagine. They remind me that in Him is the ultimate victory. And they remind me once again of the power and authority that is in the very name of Jesus.
Some days we just need to speak the name of Jesus- and remind ourselves of who He is. 💜
There’s a lot of new right now. And to be honest, it’s scary and overwhelming and emotional… but isn’t that the place where God shows up?
In the midst of all the new, we had our consultation with Harper’s new neurologist at CHOC. First, let me just brag on God here and say how blessed we were to get an appointment so quickly and easily! People come from all over to this epilepsy center seeking care, and the referral process can take FORever.
We left NC one month ago. And we’ve already had our first appointment. That is unheard of!
Back when we made the difficult decision to move Harper’s care from Duke to John’s Hopkins, I remember how astounded I was by the level of care we received- the knowledge, the questions asked, the research, the options… it was incredible.
This was even greater.
These doctors had already studied Harper’s charts and history, and knew what had worked and what had not. They had looked at her images and her scans and tests and were familiar with her case before even talking with us. They already knew things that should be done and had recommendations for us.
That brought both good and bad news, as is the usual rollercoaster we are accustomed to with Harps. Good news- she is stable. Her condition is not improving, but she hasn’t gotten significantly worse, we have decent seizure control, and she isn’t showing signs of severe regression. Also good news- there are new medications they have here that we haven’t tried, so more options for her, including a better, less invasive rescue med for us to carry.
The negatives- based on what they’ve seen in her charts, they feel her case is most likely a rare one in which her condition is being caused by structural and/or genetic issues, and therefore no long term cure. In other words, we keep treating the symptoms the best we can as long as we can, but there is the likelihood that treatment options will run out down the road.
Now, before I go any further, let me clarify… I type that out because that is what THEY say. That is the opposition we face regularly when it comes to Harper. And it is what we have been told since a week before she was born. We stand firm on the fact that it is NOT what our God says! He has shown that already. She has superseded everything the doctors have said since the start, and that is because of what God is doing in her. We fully believe He has great plans for her, and that her life is meant to bring glory to Him.
Now, back to the rest of the report… in order for the new team to determine the best course of action at this point, she has to undergo a LOT of testing. For the first time, she’ll have genetic testing done to see if there is an underlying cause to the malformations in her brain, which could give insight to further treatment options. She’ll also have a detailed MRI under sedation (we’re waiting for that to be scheduled), and then in November she’ll be admitted to the hospital for a weeklong EEG study during which they’ll wean her medications to induce seizures in order to gain a better understanding of what type she is still having and what parts of the brain are being affected at this stage. We are also working on a potential updated neuropsych evaluation, and getting set back up for all of her therapies.
So, a lot of new territory, yet the same in a sense as we’ve faced this before. We trust God’s plan and provision, and know that His plan for us includes providing care for our kids. He is good, and He is good at being God!
Can I still say that now that I no longer live in the southeast? I’m not quite sure, but I know that I apparently say a lot of things that people out here aren’t too familiar with. I stopped counting how many times a day I have to repeat or explain myself!
It’s been a hot minute since I’ve done an update here. Per the usual silence on the blog, I haven’t really known what to say or not to say or how to say it. One day a book will come with all of our misadventures and everyone will have a good laugh!
Nonetheless, we have arrived to what is now “home.” We had some grand adventures along the way and made some beautiful memories- and we had some huge, scare-the-pants-off-you challenges at the end that tested and stretched us in new ways. Let’s just say being stranded in the desert for five-six hours with your children (one with special medical needs) and no clue how you’re going to get out brings a new level to your prayers… and those prayers keep rolling when you finally get a ride in the dark with a not-so-friendly guy riding around with large, living bearded dragons hanging on his neck… and then more so when you load your family up in the not-repaired RV to travel through the night through the desert in the middle of insane storms into unknown territory.
But we made it. We have been here almost two weeks now in a temporary rental, without an actual AC unit in this house while temps outside have been anywhere from 100-116 degrees during the days. There are bugs and lizards and cacti. Everything is dirt and rock and it smells funny. There’s not much in the way of shopping or restaurants unless we drive an hour or so away.
Yet there is so much beauty here. We are surrounded by mountains and God paints these desert skies with the most beautiful colors every evening. It’s peaceful and quiet, and at night you can see stars like nowhere else on earth. The people here are friendly and welcoming, and the opportunities for sharing the love of Jesus are endless. There is so much work ahead in renovating the church building and starting new ministries, but we can see God’s vision so clearly for this place and it is so exciting to be a part of that.
For our family, this has also been a time of beauty as we have had to rely on one another like never before. This adventure is lonely and we are all homesick- but we have each other and this has created a bond that we could not have formed any other way. We have a more unified family vision and our pace has slowed down in a sense because we are all working toward a common goal together. I watch my girls play board games and color and do crafts, and we sit down for meals together and talk and run errands together as a family. There is laughter and conversation and a peace even though we feel so far from home and normal. As a mom, it has been a beautiful thing to witness, even when we are driving each other crazy from all the togetherness and lack of personal space!
Even Harper has handled the transitions fairly well so far. She has had her moments, of course, but overall she has been adjusting very well to the changes in routine and structure and environment. She had a final EEG at Duke on our way out of NC, which did not lend itself to the greatest results. Her last EEG had shown improvements on her latest treatment, so they increased the medications in hopes of seeing more improvement (or even diminishing the ESES altogether). However, that has not been the case, and despite the increase in treatment, her EEG seems to be declining again. It wasn’t drastically declined, but her percentages were slightly higher and she was showing some activity in both sides of her brain again instead of it being localized.
The good news is that they pushed in a referral to the epilepsy center at CHOC out here in California, and they have already reviewed everything and called us with an appointment next week! We are excited to have a new doctor look at her case and get new input on potential treatment plans, so we are hopeful that this will be a step forward for our girl.
One thing I have been learning is that this journey of life is crazy, and scary, and inconsistent, and full of twists and turns and uncertainties… but God is not. He is just as true today as He was in the beginning and as He will be tomorrow. He is good when circumstances are great and when they are rotten. He is faithful when I can see the beauty around and when I feel lost in the mess. He is our steady hand, our firm foundation, our solid rock. He is God.
Know therefore that the Lord your God is God, the faithful God who keeps covenant and steadfast love with those who love Him and keep His commandments, to a thousand generations… (Deuteronomy 7:9)
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)
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.
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.
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. 💜
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).
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 💜
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!” 💜