Processing and updating

On social media I said I would post an update after I prayed and processed.

Instead, I’m updating as I pray and process because this writing thing helps me in the processing. Plus, at this point, I may never be through the praying and processing!

To say that I’m shell-shocked this evening is an understatement. And I really should not be because with Harper nothing has ever, ever been as expected. Yet here I am.

Back in December I reached out to Harper’s neurologist in Baltimore after she had some visible seizures. It was a super busy time of year and there was lots of excitement, and sure enough once she was out of school and had time to rest the seizures seemed to stop. Still, we decided to follow through with our EEG and appointment this week, fully expecting to go in and hear that the meds are working as they should be so we can just continue on with our current course of treatment.

Wrong.

So, it’s really complicated, but basically our girl is having constant seizure activity. For whatever reason her brain is now firing abnormally most of the time. Her EEG showed right at 100% of the time in her sleep (totally confirming the ESES diagnosis) and well over half of the time when she’s awake.

The confusing part for us is that we don’t see a typical seizure so we don’t understand the severity of what’s happening. But as it was explained to me today, her brain is not getting any rest. This impacts her learning and behavior. And the high rates of “blips” when she’s awake impact her cognitive function, her attention, her learning, her focus, her memory… we never can be sure if she’s fully “with us” or not. A lot of the strange or impulsive things we notice her doing could be attributed to this seizure activity. This also puts her at a higher risk of bigger seizures and SUDEP.

Treatment is tricky. ESES is rare and fairly newly discovered so there are not a lot of options. There are three meds to choose from without going to a more challenging treatment with risky side effects. She built a resistance to one quite a while back, so that leaves us with one option to combine with our current med. This new one can have some unpleasant side effects that need to be monitored so Harper got reintroduced to blood work today- not fun.

We have a month to see if this works. There is too much at risk to let it continue, especially as quickly as it has progressed. The good news is that we caught it when we did, and that we have a doctor who is taking it seriously and treating it aggressively. She was amazed at how well Harper is doing in spite of all of this going on, but that is the power of God!

This is where I normally write all the great, positive stuff, but I’m not. It’s not that it isn’t there. It is. Spend a day with this girl and you’ll see all the goodness of God. Meet Jesus and you’ll see all the reasons to shout and give thanks. And come back to this blog later and I’ll be ready to testify again.

In the meantime, please lift this weary mama in prayer. This was not the news my heart was prepared to hear this week, and with this comes the threat of so much fear and uncertainty. I say threat because I have a choice to let it take root, and I choose daily to fight it. I have also been dealing with some minor health inconveniences of my own that are exasperated by stress, and I’m doing this without my husband right now, so this has been a season of pressing even harder into Jesus!

Bottom line, we need this medicine to work amazingly well with no side effects over this next month so we can keep pushing forward 🙏🏻

Family year planning…

So, it’s a new year.  Hey, it’s even a new decade!

With all of this newness comes a lot of planning and goal setting, particularly if you’re a mom.  Even more so if you’re a mom who also has a husband with a “regular” career, a military career, and a ministry- who also has three children, the oldest of whom is in high school getting ready to start college courses and wants a job and the youngest of whom has special needs- who also has a career as a teacher- who also has a home to manage and friends and extended family members- who also is enrolled in graduate school- who also wants to prioritize her walk with the Lord above all else.  I don’t know about you, but all of those “also”s stress me out just a bit!

There can be a lot of pressure this time of year to organize it all and get everything straight and feel like you have it all together as you jump into a new year.  I had big expectations of myself this week in terms of the planning and organizing for everyone, but as I approached the lists and tasks there was a hesitation.  Deep in my heart I kept hearing the Lord whisper that one word He led me to as my focus this year- roots.

If my focus for the year is on roots- getting back to my roots, extended my roots, strengthening my roots- what does that look like for our family?  As we put the calendar together and map out our year and set our goals, what do we need to prioritize to ensure that we are rooted where we need to be?

The Word.

Yes, there are lots of goals we can set for our family this year.  We can dream big and work hard and move mountains, but at the root of it all must be a commitment to the Word of God.  I want my children to know the Word.  I want my children to hear the Word.  I want my children to read the Word.  I want my children to receive the Word.  I want my children to do the Word.

My heart’s desire is to cultivate discipline, respect, and love for the Word of God.  To do that, I must have discipline, respect, and love for the Word of God.  It has to be a priority every single day.  My children need to see me in the Word, and our conversations need to be seasoned with the Word.  We need to be speaking it around our dinner table, praying it over one another, and embracing it in every aspect of our lives.

And it’s not enough to just tell my kids to read the Bible.  It needs to be modeled for them and taught to them.  They need direction.  They need guidance.  They need encouragement.  They need to know that it matters and that I care more about their spiritual well-being than anything else.  Their love for God is more important than their social status, their academic success, their hobbies, their sports achievements, or anything else that tries to take precedence in their lives.  I am more concerned for their souls than their success.

So to bring that point home this year, I set the calendar and to-do list aside today and put together a family Bible-reading plan.  Now, I know there are lots of plans already created out there, but I wanted this to be personal and relevant for our family.  I want it to be enjoyable, so I’m not pushing everyone to read the entire Bible in one year.

Instead, I asked my girls to tell me what books of the Bible they wanted to read this year.  From there I put together a daily reading plan that will take our family through about half of the books of the Bible this year.  There is an assigned passage for each day of the year, and we read the daily passage on our own.  This gives my girls a starting place for studying God’s word on their own, and also provides some structure and accountability.  Life is busy, and the reality is that we rarely have time to all sit down and read the Bible together and have a dedicated family worship time.

But with this we at least have the opportunity to start conversations.  We can check in with one another.  We can talk about that day’s reading in the car or over dinner.  We can ask questions and relate the passages to what’s going on around us.  It can be as in-depth and involved as we need it to be on any given day, but is simple enough to not cause stress or overwhelm anyone.

My prayer is that this works for our family this year.  I know I’ll have to tweak things as time goes by, and my technologically advanced children will probably take the plan and put it on their devices while I continue along with my pen and paper checklist, but the goal is to promote that discipline, respect, and love for the Word, as well as unity of heart within the walls of our home.

That’s my big idea for 2020… I’d love to hear what works for your family!

Roots

Being the lover of words that I am, I get really excited each December to choose my one word for the next year.

Last year, my word was “fresh.”  I wanted a fresh heart, ready to receive God’s word and His goodness, and it was a year of “fresh” in so many ways.  Our family experienced a lot of changes and we entered new seasons of life, and in it all I did indeed see the goodness of God in fresh and new ways.

As this year ended, I thought I already had my one word narrowed down to a couple of different options, and this morning I sat down with my journal and my Bible, prepared to pray and seek and settle on one of those words.

But, much to my surprise, God led me in an entirely different direction, as He so often does.  How many times do I think I have it all figured out, just to find myself at His feet in a blubbering mess, once again shocked to hear what it is He’s saying to me?  Ummm… too many times.

Anyway, I have just started a study on the book of James, and I am going through the book verse by verse.  Today I hit James 1:21, which says, “Therefore put away all filthiness and rampant wickedness and receive with meekness the implanted word, which is able to save your souls.”  I’ve read that verse multiple times and I’ve taken note of the putting away and the receiving, but today my heart stopped on that word implanted.

Bear with me here as I chase the Lord down this rabbit trail.  So, according to Webster’s dictionary, this word implanted means “to fix or set securely or deeply; to set permanently in the consciousness or habit patterns.”  Therefore, when I received the word of God as truth, it was securely, deeply, and permanently set in me.  In other words, it was ROOTED.  If something has been implanted, it has taken root.

Now the Bible says a lot about having strong roots and being rooted in Christ.  There is the parable of the sower and the seed found in the Gospels.  Colossians 2:7 speaks of being rooted and built up in Christ.  The first Psalm talks about being like a tree planted by streams of water.  In Ephesians we see that we should be rooted and grounded in love.

But this is the passage that the Lord led me to today that solidified my one word for 2020: “Blessed is the man who trusts in the Lord, whose trust is the Lord.  He is like a tree planted by water, that sends out its roots by the stream, and does not fear when heat comes, for its leaves remain green, and is not anxious in the year of drought, for it does not cease to bear fruit” (Jeremiah 17:7-8).

ROOTS.

That’s my one word for 2020.  After my year of fresh, it’s time to circle back around and focus on my roots.

Roots tangled up in trust.
Roots by the stream so that there is NO FEAR when the heat comes.
Roots that provide sustenance so there is no anxiety when all seems dry.
Roots that keep me grounded in my identity in Christ.
Roots that hold me upright when the winds of the world try to knock me down.
Roots that hold my family tree in place, so my children know they are loved and cared for and created for a purpose.
Roots that withstand the trials of time.
Roots that press down and press out and press on to grow stronger and stronger.
Roots that extend deeper and deeper still to grow a tree that produces fruit in all seasons.
Roots in Christ.

 

 

So long, 2019.  2020 is taking me back to my roots.

Once again…

Once again, I’ve not posted in a while. A really long while.

There are a lot of reasons for that. Work. School. Life. And Harper has done really well through all of the busyness of everything, so I’ve been holding on to that and feeling “normal” again.

It’s funny to me the “normal” things that we once took for granted are now big steps. We’ve made it a couple of months with just her regular therapies and no doctor’s visits. She had a good report card without an extensive amount of extra work or tutoring. She’s participated in school parties, festivals, and musicals. I was able to stop using a checklist to help her remember how to get ready in the morning or at bedtime. She even started sleeping in her own bed in our room instead of beside me in my bed! I began to rest easier at night, to not analyze her every move, to loosen the reigns a bit and let her be a kid. It was good.

Things were going so well that I reached out to her doctor in Baltimore to ask about postponing her next appointment in January. She agreed.

And the very next day the seizures came back.

I’m not going to lie- I’m kind of mad about it. Actually, I’m really mad about it. Just like that I’m back to watching her every move. I listen for the rhythm of her breathing to change in her sleep. We’re falling back on checklists to keep her on track and helping her get dressed and reminding her of where things are or what she was just doing. Easy things are becoming more difficult again and her memory seems to be failing her again.

I see her frustration. I see her confusion. I feel her fear and anxiety as she loses control of her body. Last night I held her on the bathroom floor when she should have been snuggled in her bed and I watched her face contort in pain and her muscles twitch involuntarily and I wanted to scream for her. It is not fair!

I hate this disease. I hate what it does to my baby’s body and her brain. I hate the toll that it takes on our family. Yes, hate is a strong word, and it isn’t one that I toss around lightly, but tonight I feel it.

I know that we are the blessed ones. It could be worse, so much worse. We’ve experienced worse, and we see those who live with worse every day. I don’t take that for granted.

But tonight I’m mad. I don’t doubt the goodness of God and I don’t doubt that He is working a plan greater than me and my feelings. I know that my girl brings glory to Him and that ultimately she is His. I have hope that this is not it, that we will see complete healing. But in this moment I feel angry.

And I share that not for pity. I’m not looking for a pat on the back, nor do I need anyone to tell me that I’m wrong. I put this out there to encourage someone else who doesn’t understand the why, who feels angry or frustrated or disappointed, who keeps waiting for that prayer to be answered, who is weary and worn, who feels alone or unnoticed.

You’re not alone. And feeling those feelings does not make you any less. I understand. Our paths may be different, but I get the emotions and the thoughts and the feelings.

Better yet, He knows. The Maker of the heavens and the earth knows your every thought before you even think it. He has formed you and given you purpose, and He loves you with a love like no other. He is good. He is mighty. He is faithful and just. He hears you, He sees you, and He is with you.

In that truth is where I find my rest tonight. I’m praying you do the same, friends ❤️

“He is the Rock, his works are perfect, and all his ways are just. A faithful God who does no wrong, upright and just is He.” (Deuteronomy 32:4)

“O Lord, you have searched me and you known me! You know when I sit down and when I rise up you discern my thoughts from afar... You hem me in behind and before, and lay your hand upon me.” (Psalm 139:1, 5)

He meets us where we are…

I’m going to be real candid here- This past week tried to take me out.

We had the youngest having seizures, the middle with some mystery illness, the oldest not feeling her best, the mama with a shifting kidney stone, a hurricane that leaked water all underneath our dining room floor, and a trip to Duke… on top of regular life and bills and appointments and school and work.

By the time we made it home from Duke (after having our girl laid out in the grass on the side of the interstate as she seized and vomited everywhere) to our other sick children and my husband left on military orders for the weekend, I was ready to throw in the towel.  If you drove by my house, you just may have seen me waving the white flag out the window.  I. WAS. DONE.

So when Saturday morning rolled around- at 5:30 when my no-sleeping child decided it was time to get up- and the husband was gone and the older kids were arguing and the youngest was having tantrums of epic proportions and my to-do list was a mile long, all that was on my mind was to at least get a fast shower in before we had to leave the house.  And at the point the only way I saw that happening was to turn a movie on so that *hopefully*  no one would cause bodily harm to anyone while I washed.

As I stepped into the bathroom, you can imagine my surprise as I felt an overwhelming urge to open my Bible.  With all that was going on in the house and all that I had to do, the last thing on my mind was to sit down and read Scripture at that moment.  I didn’t have time for that!  We had somewhere to be.  I couldn’t trust the kids alone.  My mind was scattered in a million different directions.  It just was not the time.  But as I tried to argue it away, the Lord kept pressing, kept calling me to come close, kept whispering to my heart to just be still for a moment.

I conceded. I crept into my closet and grabbed one of my “other” Bibles (you know, the ones that haven’t been worn in good yet), and I shut the door behind me and said, “Okay, Lord, here I am.”

And do you know what happened? HE SHOWED UP! He led me straight to the Book of Psalms, to Psalm 65. And as I read those words He spoke life into my weary heart. So many words of that passage spoke so much truth, but the Lord had a message just for me in verse 9… You care for the land and water it; You enrich it abundantly. The streams of God are filled with water to provide the people with grain, for so You have ordained it.

Now, I’ll be honest, this is one of the verses I normally just skim right over. But God stopped me right there, and reminded me that this verse was for me.

He cares for me.

He waters me.

He enriches me.

And He enriches me abundantly. That word abundantly means “plentifully; in large quantities.” In other words, above and beyond what I ask for or even what I could imagine.

That verse goes on to say to speak of the streams (or rivers) of God being full of water- they never run dry! No matter how much it takes to quench me, there is still more. No matter how dry I am, His water keeps flowing.

And it’s flowing for a purpose. It’s flowing to provide just as the Lord has ordained. And He has ordained our provision- we will not go without.

That rest we need? We have it in Him. That answer we are waiting for? It’s coming through Him. That healing we long for? It will be manifested. That comfort, that peace, that wisdom, that discernment, that friend, that love… all of it is in Him.

He is our caretaker, our enricher, our provision, our source of living water… that is a promise to cling to. I’m grabbing on to that with all I’ve got this week- won’t you join me? ❤️

 

September already?!

Y’all, I just can’t seem to keep to a schedule with these blog posts! My goal for the last year has been to get on a more regular schedule for posting, with at least one post each week.

The last post I shared was in July. It is now September. Suffice it to say my plan is not working.

Anyway, since July things have been pretty calm when it comes to Harper. Now, in my own life with school and work and three children and a husband, not so calm, but maybe one day I’ll get around to a post about all that (or maybe not, given my track record…)

Harper started first grade and has adjusted so well thus far. She is all about becoming more independent and is so excited about learning new things. It has by far been our smoothest transition yet with her, which is an absolute answer to prayer.

As far as seizures go, I was feeling pretty confident in our level of control. We had not seen any daytime seizure activity since her hospital stay, and we spent the last couple of months weaning off of one of her medications. However, those pesky things have been trying to make a reappearance, so we are on heightened alert right now. She is back to having very restless sleep and waking up several times a night, and we have seen some seizure activity pretty consistently in the last week while she’s awake. Fortunately those episodes have not progressed to the full-blown tonic-clonic seizures, so we are still counting our blessings!

We do have a message in to the doctor to see what our next step is to stop these episodes since Harp is down to one med right now, and we have a trip to Duke on the schedule this week. While we have transitioned her seizure care to a neurologist at Johns Hopkins, we still have regular follow-ups and scans with her neurosurgeon at Duke. This week she will have an MRI to monitor the cysts and fluid in her brain, and we are praying that she will be cooperative and expecting nothing but good news!

This morning at church I heard a great message, and one of the points the pastor made really resonated with me. See, Harper is 6 1/2 years old now. We have been doing this for that many years, and we have been steadily praying all along the way. And while we have seen great miracles worked in her, we have not witnessed that total healing completely manifested yet. (And I do emphasize yet because I know it’s coming!).

We get tired. We get discouraged. We have our questions and wondering and not understanding. But this morning the pastor said something along these lines (and I’m sure he said it much more eloquently, but you’ll get the gist)- oftentimes God does not change our circumstances, but He changes US.

We are still in this battle. We still fight every day and our entire family is impacted in ways most people don’t even know. It’s been a long battle. BUT GOD has been faithfully changing each one of us along the way, revealing Himself in ways we never would have seen before, and growing us in ways that we would have never experienced. Our journey isn’t over, and He isn’t finished with us yet. We will choose to be thankful and give Him praise for all He has done, all He is doing, and all that He will still do. He is GOOD, y’all!

First Flights & Faithfulness

It was a big weekend for Harper (and Mom)… she took her first airplane ride!

She was super excited about it and had a blast, but unfortunately the destination was not so exciting. We had to return to Baltimore for follow-up testing regarding her ESES diagnosis. Since we were just there a month ago and the trip took about ten hours in the car by the time we made all the stops along the way, we opted for the one-hour flight this time. Yes, it was more expensive. Yes, it was a bit scary to maneuver the airports and big city alone with her. But all in all, totally worth it for her comfort!

Harper had an overnight EEG, a re-evaluation of certain items on her neuropsych testing, and a follow-up with the neurologist. The results from everything have been somewhat complicated.

We received the full report from her testing last month, which showed a lot of concerns developmentally. While she has made great strides and progress in so many ways, there has unfortunately been a lot of regression in other areas. I won’t lay out all of those details here, but there is a lot for us to process and consider, and decisions to pray over.

As for the ESES, the good news is that the medicine has decreased the intensity of her seizure activity in her sleep, and there were improvements in one area of her cognitive testing. However, there is a flip side to that. First, while the seizure activity is less intense, it is still at the same frequency, and the testing indicated that her memory is still regressing instead of improving as they had hoped. The next solution would be higher doses of the medicine she’s on- but we just had to decrease it because of the side effects.

We are going to instead try weaning her off of her original medicine to see if perhaps the combination of the two medicines is the cause of the severe side effects we’ve seen. This will be a two-month process, and will be re-evaluated if her daytime seizures start again, but if it goes well, we will then look at tackling the ESES more aggressively with the other medicine.

At times this journey seems so long. There is so much trial and error. There are so many questions without definitive answers. And oftentimes there are so many answers we don’t want to hear. There are times that I get angry about it, and times that I just feel sad as I wade through all of the information that comes at us. Sometimes I wonder how after over six years of this road I can still trust and believe.

Here’s how- the faithfulness of God. I see His faithfulness in every little step we take. Every milestone she makes. Every day she wakes me up with that sweet smile and too-tight hug. Every reminder she gives me and every tooth she loses and talks about infinitely. Every word she learns to read. Every song of praise that leaves her lips. Every prayer she says and every time she raises her hands in worship. Every story she tells with such animation. Every time she falls but bounces right back. Every giggle, every dance, every time I hear her little voice say, “Mommy.” Every time I watch her play with her dolls or be brave or try and try again… it is all because of Him.

And because I’ve seen His faithfulness in all the small things, I know He is faithful in the big things.

He who calls you is faithful; he will surely do it. -1 Thessalonians 5:24

Let us hold fast to the confession of our hope without wavering, for he who promised is faithful. -Hebrews 10:23

For great is his steadfast love toward us, and the faithfulness of the Lord endures forever. Praise the Lord! Psalm 117:2

A child of God…

www.youtube.com/watch

(Note: I do not own rights to this song!)

We were in the car, on our way to another appointment, and my mind was focused on the report I had just read about the Disney channel star dying from a seizure in his sleep. That report hit just a little too close to home and had me rattled, and I was in the midst of a serious conversation with the Lord in my head, totally oblivious to this song on the radio or the sweet girl who was singing along so cheerfully, when that little voice from the backseat jolted me from my thoughts…

“Hey mama! I am a child of God! And you are, too… right?”

Y’all, I almost had to pull my car right over on the side of the road. So many times I hear the Lord speak to me through my girls, but this audible, clear word from my baby’s mouth made me weep and shout, all the same time. I am a child of God, right?

You see, I’m guilty of walking around in fear. I worry about what’s going to happen or what’s not going to happen. I fret over the future. I wonder what tomorrow will hold (and the next day and the next day and the next day…). I let the words of mere men cloud my heart and mind instead of embracing the promises of God and walking in His truth.

I cower in insecurity and swim in doubt, forgetting WHOSE I am. I am a child of God! John 1:12 says, “But to all who did receive him, who believed in his name, he gave the right to become children of God.”

And what does it mean to be a child of God? Look at Romans 8:14-17…

For all who are led by the Spirit of God are sons of God. For you did not receive the spirit of slavery to fall back into fear, but you have received the Spirit of adoption as sons, by whom we cry, “Abba! Father!The Spirit himself bears witness with our spirit that we are children of God, and if children, then heirs- heirs of God and fellow heirs with Christ, provided we suffer with him in order that we may also be glorified with him.”

You see that? As children of God we are HEIRS of God, fellow heirs of Christ. That is some good news! And if we know that we have such an inheritance, are we really worried about the things of this world? Are we actually scared of what happens here if we know what awaits us in glory? Are We afraid that our Father doesn’t have our best interest in mind?

We shouldn’t be! And sometimes we just need to be reminded of Who we belong to. I am chosen. I am loved. I am highly favored. I am not forsaken. I am a child of God- and so is my daughter. We will not live in fear or dread, but in the joy of knowing Him and being known by Him.

And friends, guess what? If you’ve trusted Jesus as your Savior, you too are chosen, loved, highly favored, and not forsaken. You are a child of God.

Let’s walk in that truth today ❤️

Real.

The last week or so has been a struggle.

I usually try to post the good things on here- the answered prayers, the blessings, the good news- and even when the news isn’t the greatest, I try to focus on the good that is there. But today I’ll just be honest, because I think there is danger in putting up a happy front all of the time and not being real.

This week has been a lot of real. It has been bouncing around to appointments with a child who screams for thirty minutes in the car. It has been watching my usually-bouncy-and-happy little girl battle fatigue and aggression, spacing out while I’m talking to her and spending the majority of her day crying, uninterested in the things that she once enjoyed. It has been difficult conversations with doctors. It has been hard-to-swallow information and diagnoses that hurt my heart. It has been pages of reports that bring me to my knees and fear that threatens to cripple me. It has been reverting back to checklists and schedules and techniques to ease my girl’s days as her mind and body grapple with medications that wreck her. It has been saying no to many of the things we usually enjoy this time of year and praying that my other girls will understand. It has been painful, it has been challenging, and it has been lonely.

I found myself weeping one night, which is something I don’t often do. I am just not a crier, but the floodgates opened and as I sat there in a puddle of tears, I was shocked as I realized that I was mentally berating myself for being emotional. I was downright angry at myself for crying. “Get it together! You’re stronger than this! You can’t solve any of this by crying over it!”

And as I chastised myself, I felt the Lord whisper to my heart, “You’re wrong.”

The fact of the matter is, I cannot get this together. This situation is far beyond me, and that is hard for me to accept. I am a fixer. I want to make everything better, especially for my babies. But this time I can’t. Now, don’t get me wrong- I won’t stop trying. I will fight for my girl, even if that means traveling all over the U.S. to get her help or telling a doctor that some of their recommendations just aren’t happening because while they may know her condition, they don’t know her.

But sometimes my fighting isn’t enough, and I have to realize that. Sometimes my fighting needs to be less of my own efforts and more of my prayers to the One who can get this all together. Sometimes I need to do less standing up and running around and more kneeling down and surrendering. (And by sometimes, I mean all the time!)

I also came to the realization that I am not stronger than this. I am weary, I am worn, and I am weak. I’m not strong enough to face this! But the One who is in me is, and His strength is perfected in my weakness. And He does not expect me to face this in my own strength.

As for all that crying? Well, the tears may not solve anything, but the Bible says that God sees them all and that He cares. He draws near to and heals the broken-hearted. Psalm 56:8 in the Message translation says it this way… “You’ve kept track of my every toss and turn through the sleepless nights, each tear entered into your ledger, every ache written into your book.” The tears matter, and my brokenness drives me even closer to Jesus.

So, to those of you who need to hear this reminder, here you go: it’s okay to feel broken. It’s okay to not have all of the answers or be able to fix it all. It’s okay to feel sad, to feel weak, and to feel scared or angry or disappointed. It’s okay! Feel all the feelings. Let it all out.

BUT- don’t stop there. Push through those emotions, cry out to God, and let Him heal your hurt as only He can do. Let it all out to the One who can take it all and bring beauty from ashes. Let Him hold you and mold you and lift your tired bones back up from the mess. We may not get up off the floor with all the answers, but we can step forward with the One who already knows the outcome. I don’t know about you, but I would much rather grab His hand and walk on than hide away and wallow in my tears.

Be real, but be real to the real God. And if you need a friend to lift you to the real God, I’m here ❤️

The low-down on Baltimore

We are tired.

Two weeks ago today we left home, and we are on the road as I write, making our way back south. (And for that I am SO grateful!!)

It’s hard to summarize this whole trip. A lot has happened, and it will take some time for us to get full reports on everything. Harper has her neuropsych testing at Kennedy Krieger at the start of the trip, and there were some definite red flags, but I have a phone conference next week to get the official word on that.

Harper spent eight days total in the EMU at Johns Hopkins, hooked up to the EEG and monitored round-the-clock by video. We had the usual hospital experience with IVs and nurses and doctors, mom sleeping in a recliner, hospital trays of food, and so forth. Through it all our girl kept smiling and cooperating and making friends with everyone who walked in the room. The only time we had tears was at the end, the last two nights at bedtime when she realized she had to sleep there yet again, and the last day as they removed all the sticky stuff that had broken her skin.

The goal of this trip was answers. As Harper has grown, she has made her way through a list of medications that haven’t worked for controlling her seizures, and there haven’t been any other options. The doctor’s main purpose with this study was to see if they could pinpoint where Harper’s seizures are originating with the hopes of being able to offer surgery as an option down the road. Naturally, the assumption has always been that her seizures are coming from the part of her brain where her brain cysts are.

That assumption was correct- and incorrect. Unfortunately, this EEG proved that her seizures are coming from two different locations, both the left and right sides of her brain. This most likely means that surgery will not be an option to help her, but her case will be presented and discussed at their conference next week and they will let us know their recommendations from there.

The other thing that came up this week is a new diagnosis. While Harper does have seizures at various times of the day and still has a tendency to go into status, she has also developed a rare from of epilepsy called ESES, which means she is having seizure activity pretty steadily in her sleep. This is escalating into seizures in one part of her brain that we do not see her having- the EEG showed three definitive seizures in addition to the other activity in one night, and she never even woke up.

Our immediate concern as parents is the danger factor, but the doctor did offer some reassurance that while the risk of death is higher with seizures in sleep, that is associated with tonic-clonic seizures, and Harper shows a pattern of waking up and making some noise if the seizure starts to spread like that. The biggest concern at this point is learning and development. ESES can cause a regression of skills, learning disabilities, memory loss, etc, which combined with Harper’s cysts and damaged brain areas is not ideal.

They have decided to start an aggressive treatment immediately, which is a high-dose of a medicine she happens to already be on. It is a strong medicine, but since she has been taking it already they know she tolerates it well. It will just take some time for her to adjust to the higher doses, and we will go back in a month to have a smaller round of testing done to see if this treatment is proving to be effective for her.

Fortunately we are out of school for the summer so we can get this testing out of the way and give her body time to adjust. She is extremely tired, a little unstable on her feet, and quite moody, but we’re hopeful that will all settle down in the next couple of weeks.

We have so much to be thankful for, and as always we can see God’s hand in it all. It is a blessing to know Harper is getting the care she deserves- as a parent you will do whatever it takes to get answers and help for your child, and it has been a relief to finally see that happen. Now we keep pushing forward, for He who promised is faithful!