The next adventure

Kindergarten graduation.

There have been times that I’ve questioned that tradition, that I’ve wondered what the fuss was all about. I mean, I didn’t have such a thing when I was a kindergartener. What’s the big deal?

But last week our youngest, our miracle, donned a cap and gown and received her “diploma,” and all I could do was weep. She sang, she danced, she recited, and she READ, and I was in complete awe of everything she accomplished. The miracle of the moment was not at all lost on me as I soaked in the goodness of God.

And now it’s summer break, and while we see other families enjoying fun vacations, we are preparing for our big trip to the hospital Baltimore, which is less than two weeks away. I am, quite honestly, not excited about all of this.

We will be traveling up a couple of days early to enjoy some family time in D.C. before we have to face all of the medical stuff. Harper’s first day will be spent at the Kennedy Krieger Institute for neuropsychological testing. She went through that about a year and a half ago, and for her it’s fun and games for several hours as they see how she is doing with her learning and development. It’s very helpful for us to make sure she’s getting the services she needs and pinpoint strengths and weaknesses.

The next day we will be meeting with Harper’s new neurologist at Johns Hopkins. We have already been so impressed with her, and we have decided that it is worth the traveling to be sure she is getting the best care possible. Unfortunately we have seen an increase in seizure activity over the last several weeks, so we know it’s time to explore more options.

After those appointments comes the biggest challenge- Harper will be admitted into the EMU (epilepsy monitoring unit) at Johns Hopkins for seven days. I will be staying with her, and she will be hooked up to all of the monitors from head to toe and we will camp out there for a week.

That’s our biggest need for prayer. We will be very far from home. Daddy and the girls will have to come back to N.C. and leave us there. She will have to deal with all of the monitors and wires and an IV. She will be confined to a tiny room in a hospital bed with very limited mobility. Seven days is a long time for a little girl in that situation!

They will also be weaning back her seizure medications during that time to increase the likelihood of seizures. They need to see what kind of seizures she’s having, where they are coming from, etc., so they need to see seizure activity. We have done this one time before at Duke and it was completely nerve-wracking… and ended with Harper in the PICU. Her seizures are so unpredictable and very difficult to stop once they start, so it can be a scary situation even in a supervised hospital setting.

So why do it? Well, without gathering that information, they can’t find the best treatment options. She’s only six years old, she’s on good-sized doses of two medicines, and we have quite a few failed medications behind us already. Our options are becoming more limited, and we are still seeing that issue of her medicines losing their effectiveness every couple of months. And the hard truth is that it only takes one seizure to lose our girl.

So we have covered this in prayer and we press on trusting God’s hand in all of this, and we covet your prayers as we embark on this adventure. Of course we appreciate any prayers as we prepare, but please plan to lift Harper up June 10-19. We will post updates as we can! ❤️

15 years of being a mom.

That’s what this girl’s birthday means. I was so young and so naive when she came along. I missed out on so many moments and took so much for granted… it felt like all I did was blink, and now she’s a gorgeous teenager with dreams and ambitions and a very busy life.

She’s been our first at everything, which means we’ve made a LOT of mistakes, somehow she has become this amazing, godly person in spite of us, and I couldn’t be more proud of her.

Trustworthy? She’s it. Responsible? That’s her. Committed, hardworking, strong, independent? Yes, yes, yes, and yes.

She inspires me in her confidence to be exactly who God created her to be. She knows who she is and Whose she is and she walks firmly in that. She knows what she wants out of life and she goes for it with all she’s got. She lives her life to the fullest and shrinks back from no one, and I love watching her blossom into who she is intended to be.

This journey of mommyhood seems so long in the everyday mundane, but then suddenly you’re looking at a young woman chasing her dreams, sending her off on her own to pursue those dreams, putting her behind the wheel of a car, looking at pictures of her with her own people having a blast at prom- and all you remember is that tiny blue-eyed baby who needed you for everything. It is true what they say- “The days are long but the years are short.”

Happy 15th birthday to my beautiful “Rae” of sunshine… you shine wherever you go, and that smile of yours has always been able to light up the room. Thank you for giving me the greatest title I’ve ever had, the title of “Mom.” You are a gift ❤️

Documenting…

I have hesitated on writing this post this week.  I just don’t know that I have the right words, but this blog has been a place for me to document the journey we’ve been on with Harper, so here goes…

This weekend was a big one for our family.  A year before Harper was born, my husband joined the military (as a reservist, not full-time!), and God really began a big work in both of our hearts, and it didn’t take long for my husband to realize God was calling him into ministry as a chaplain.  It took a little longer than that for him to accomplish that- years of schooling, ministry ordination, applications and paperwork and interviews, and loads of prayer, but he finally did it, and we were blessed to see him commissioned this past weekend.

We had a great day planned on the base after that with family day activities that are held once a year- music and food and games and an air show.  The family was all there and we got ourselves set up in the middle of the masses.  The girls were playing on the bouncy houses and Harper was singing and dancing for everyone… and out of nowhere, the seizure came.  She lost her balance and tumbled down the inflatable slide, but seemed okay at first, but then came the crying and confusion that we have been seeing right before a seizure starts.  I was able to hold her on my lap for the first few moments, but then we had to find a way to lay her down safely- a difficult task as we were in a big asphalt parking lot surrounded by people.

We got her down on a towel and one of us held her head as someone else timed the seizure, and as we got close to four minutes we had to administer her rescue meds.  We had the help of the medics on base and they called an ambulance- it was all a blur of commotion.  Her seizing slowed down after the rescue meds, but she was not conscious and her oxygen saturations were lower than normal, so they transported her to the ER via ambulance.  She was stable by the time we arrived at the hospital, so they just monitored her for a bit and let us take her on back to the hotel.

Harper did not sleep well that night, and had one more seizure that I know of.  We packed up and headed home, and she began to get sick.  She developed a cough and a fever, which have now been with her for three full days.  We have seen the doctor and had the usual tests, but no clear indication of what is making her sick at this point.  Our last stop today was at the hospital for a chest x-ray, and she became terrified when they pulled out the gown for her to wear.  She now associates gowns with bad things (she says that’s what they make her wear when they make her go to sleep), and cries whenever she sees one.  So we settled on topless x-rays today! (**Update… we now know she has the start of pneumonia in two places in her lungs)

The culmination of events hit me tonight at dinner as Harper prayed.  Every night Harper says the blessing- it is her thing.  And her blessing is always the same- “Dear God, thank you for this day.  Thank you for this food.  Amen.”  She is a creature of habit.  But tonight her prayer suddenly changed.  “Jesus, please help me feel better.  And please help me not to have to go to the doctors anymore.  If I have to go, please help me be brave.  Amen.”

I think my heart may have broken into a thousand pieces.  This girl is the bravest girl I know.  She is a warrior, and she faces every day with courage and joy and faith.  And I can see how God has been working through her precious life since day one, and I know that His plans are for us and that He is good.

But tonight I want her to catch a break.  I want her to not have to be brave.  I want her to not have to see doctors all. the. time.  I want her to not be terrified at the sight of a hospital gown.  I want her to not be knocked down so hard by every little sickness that comes around.  I want to go to sleep at night and not worry that I may not hear her if she seizes.  I want to go through a week (or even a day) without the thought of losing my child crossing my mind.  I want to rejoice on our good days and not be waiting for the chair to be kicked back out from under me.

Today as we drove to the doctor, Harper asked for a song, so I played one of our favorites.  It’s a long song, and there is a lot of repetition, but sometimes I just need to remind myself of who God is.  Harper sat in the backseat with her eyes closed and sang this song, and I found great comfort in the words… “Way maker, miracle worker, promise keeper, light in the darkness, my God, that is who You are…. Even when I don’t see it, You’re working.  Even when I can’t feel it, You’re working.  You never stop, you never stop working…”  Regardless of what I see and how I feel at the moment, He is making a way, He is working miracles, and He is keeping His promises.  That is where I rest my heart tonight.

Wait for the Lord

Well, friends, we haven’t posted in a while again, and that’s always a good sign! Harper started a new medication in January and it was our most successful transition yet. In fact, we made it right at three months without a single hint of a seizure!

Unfortunately our streak ended this week. She has had five episodes in seven days, each one progressing in intensity, and all coming completely out of nowhere with no warning. Today was the fifth, at her cousin’s birthday party while Mom and Dad were exploring in the woods with the older kids. We got our cross country workout in as we raced back to the house- and this mama realized how out of shape she is 🙈. This episode started like the others this week, but did actually go into a full blown seizure. Fortunately it ended on its own and did not require rescue meds.

We are back to complete frustration with our current neurologist as we have not been able to get a response this week (after she used the wrong name and sent medicines to the wrong pharmacy), but our appointment at Johns Hopkins isn’t until June when Harper is out of school. That means we have to try to deal for a little over two more months.

The good news is that we are in contact with our new neurologist and she is on top of things. She is quick to respond to our questions and has already been working on Harper’s case. She just recently posted an updated report based on Harper’s last MRI, which explained things a little more in-depth for us. She identified one large porencephalic cyst, several smaller cysts, a lot of white brain matter on the left side, dilated ventricles, and stated that she believes this is indicative of a severe case of cystic encephalomalacia (which I know nothing about!).

Between this report, doctor frustrations, and the sudden increase in seizures, I am feeling a bit dejected this weekend, but this is all part of the roller coaster ride we have been on for the last six years. I think it’s no coincidence that I opened my Bible app this evening to see this verse from Psalm 27:14: “Wait for the Lord; be strong, and let your heart take courage; wait for the Lord!” Sometimes it can be so hard to wait! I am not the world’s most patient person, and I am not really a fan of waiting.

But waiting doesn’t mean He isn’t working. It means He is doing more than I can see from my limited point of view, that He is fulfilling a purpose far beyond my scope, and that what’s waiting on the other side is far greater than this mountain we’re climbing.

So tonight I am proclaiming the words that David wrote just before that fourteenth verse… “I believe that I shall look upon the goodness of the Lord in the land of the living!” No matter what, He is good, and we are living in His goodness, and there is more of that goodness to come.

Another day at Duke

“Mommy, I don’t want to go to Duke today.”

“Why do I have to see the doctor?”

“Why do they want to get my blood out?”

“Mommy, I’m scared.”

Oh, how my heart aches. Fielding the questions and trying to explain something that seems so unfair just plain hurts some days. When she grips my hand a little tighter and looks up at me with those big, brown eyes and tells me she’ll be brave, I want so badly to take it all away from her.

But I can’t.

So we smile and pray and hug and make jokes and push forward. And I watch her rattle off her name and birthdate and chat with all of the people and bounce around the children’s hospital like it’s totally normal to be there, and I am in awe of the strength the Lord has given her.

Today’s trip to Duke was an emotional one. We were given a lot of hard information. Referrals for physical therapy again. Referrals for behavioral therapy. Recommendations for another medication to add to our regimen. More testing ahead. Loads of bloodwork (and veins that would not cooperate).

We’ve been struggling with communication and feeling like we were getting pushed off, but that was not the case today. They were very thorough, and spent a long time with us- and we even saw one of the head doctors today for a change.

Since Harper’s seizures seem to be responding very well to this new medicine, we are staying the course with it. It is a very strong medicine and we have had three failed medications already, so our options are limited. We were concerned about side effects, but they aren’t sure that the things we are seeing are necessarily from the medicine, so we are in a process of testing some things.

Based on the previous EEGs and the video recording of Harper’s last seizure, their verdict is still that she wouldn’t be a candidate for epilepsy surgery. Her seizures are just too unpredictable and happening in different areas of her brain. However, they have not ruled out VNS therapy, but that’s on the back burner for now since this medicine is working so well for seizure control.

They also felt the need to share with us some concerns they have moving forward. First, Harper’s age. Statistically speaking, children with structural abnormalities (like Harper’s brain issues) have a 50% chance of outgrowing seizure disorders by their teen/early adult years- not so bad. However, the doctor kept emphasizing that we have a LONG way to go because she is so young still. And the fact that we’ve had all the failed meds already makes that even more less-than-ideal… but we know our God and we know what He’s done so far in Harper’s life and we aren’t bound by statistics and opinions!

Second, we were introduced to something called ESES. It is a rare form of epilepsy that can affect children as they have seizures in their sleep. Harper’s EEGs seem to be trending in that direction. She did not have a high enough percentage last time to be diagnosed, but the concern is that she’s heading that way based on the activity they detected. The problem with ESES is that on top of seizures and disrupted sleep, there is also a regression of cognitive functioning- she could actually lose developmental skills she’s mastered. The plan is to have a repeat ambulatory EEG in a few months to see if there’s been any progression.

We have much to pray about and consider and decisions to be made. We had appointments made at Johns Hopkins in the next couple of months, but based on the information we received today and the testing coming up for all of this, we aren’t sure this is the time to make the switch.

While it wasn’t a day of great news, we’re focusing on the positive. Her seizures are controlled right now. She’s happy and healthy. We don’t have to think about surgery at this point. And she has already overcome so many obstacles. We aren’t giving up- we know that God is bigger than all of this, and we know her story is far from over. ❤️

New year, new decisions…

It’s a new year! A new year often means a fresh start and making some changes, and our journey with Harper is keeping with that trend.

Over the holiday season Harper got transitioned to her new seizure medication. The more frequent, small seizures we were seeing stopped, and she finally got rid of that awful rash that she developed on the old medicine.

However, the major, life-threatening seizures made a reappearance. They are not coming as frequently, just one every couple of weeks or so, but each one that comes is a risk we don’t want to take. After not using rescue meds in over a year, we’ve had to administer them three times in the last month and a half. That’s a fairly significant jump.

The newest medicine we started is not without its own new side effects, and that’s been another issue we are trying to work through. This med is greatly affecting Harper’s moods and behavior- screaming, crying, tantrums, and major aggression on top of fatigue, stomach pain, and headaches. It can be exhausting, and it is tough seeing the changes in our normally sweet, joyful girl. Fortunately we have been on break from school, so we’ve been able to deal with this at home, but school starts back next week and we are hoping she will be able to show a little self-control around other kids!

With all of this happening we have been weighing our options. After much prayer and discussion, we have made the decision to turn to Johns Hopkins in Baltimore for Harper’s care at this point. She deserves options and we need a level of consistency that we haven’t had in some time.

We will be seeing the same doctor that we consulted before who specializes in pediatric epilepsy and is the director of the epilepsy monitoring unit. Harper will be admitted to the EMU for EEG studies, and will be evaluated for possible epilepsy surgery options. They’ve also recommended that we have an updated neuropsych evaluation done while we are up there.

They are working on coordinating everything so that we can get as much done in one trip as possible, so we don’t have a date yet. It will most likely mean about a week-long trip… it’s a lot to consider and work out, but we know God will provide every step of the way.

This has been a difficult decision for us. We don’t want to put Harper through any additional challenges if it isn’t necessary. She seems so strong and healthy most days, and she copes so well with her issues. But just one of these seizures could take her away from us, and the side effects of these medicines are taking a toll on her. None of our options are ideal at this point, so we are bathing every step in prayer and trusting God with all that we cannot see and do not understand.

As always, we are thankful for your prayers for Harper and our family as we move forward and seek out what’s best for her.

Grace to the mama

To the mama whose house is a wreck, who can’t seem to conquer that mountain of laundry, who is cringing at the sight of the dust on the ceiling fan or the ring around the tub, who is over it when it comes to washing dishes again, who can’t quite remember the last time the floors were mopped or the furniture was polished or the windows were washed… grace.

To the mama who is locked in the bathroom for a moment of peace, feeling guilty because she’s not out there enjoying every second of their childhood… because it wasn’t a Pinterest-worthy holiday… because she just needs to not be touched or talked to for a few minutes… grace.

To the mama who fed the kids Ramen noodles for dinner, or let them eat candy for breakfast, who is still in her pajamas at noon, who may or may not have showered in the past 48 hours, and can’t remember the last time that kid had a bath… grace.

To the mama that is fretting over how much screen time the children have had today, or how little time outdoors they’ve had, or if they’ve gotten enough physical activity, or if they’ve had enough or too little social interaction, or if they’ve gotten enough attention this week… grace.

To the mama scrolling through social media, taking note of all the perfect decorations and matching pajamas and elaborate meals and piles of presents with coordinating bows and Christmas crafts and freshly baked goodies and smiling perfection- and feeling like a failure in comparison… grace.

To the mama who feels judged, or tired, or sick, or weary and worn… who feels unworthy, unloved, or under-appreciated… who feels inadequate, unsure, or lacking in any way… grace.

In the aftermath of Christmas and all that it entails for a mama who is doing her best to make everything special and memorable for the family, take a moment to sit at the feet of Jesus. Pause the busyness, pause the chaos and the noise, and stop the comparison. Sit in His sufficient grace. You may feel like you’re not enough, mama, but HE IS. ❤️

But he said to me, “My grace is sufficient for you…”

-2 Corinthians 12:9

Is it morning yet?

In my last post back in October I closed with “joy comes in the morning.”

Well, we are still waiting for morning to come! I say that with a laugh, but seriously… we are still in a waiting pattern.

Harper had shown increased seizure activity at out last check and had to significantly increase her medications. We have now done that, and it has not gone as well as we had hoped.

In the last week and a half, Harper has had two grand mal seizures. For those who aren’t familiar with those, I’ll say this- they are wretched. With those she has had full-body convulsions, loss of consciousness, and breathing issues, and they are lasting several minutes and requiring rescue meds. We haven’t seen these types of seizures in quite a long time.

In addition, this past week Harper has developed what appears to be an allergic reaction to the increased medicine. She’s very uncomfortable and it has been progressing, so today her doctors at Duke made the decision to stop this one medication immediately and start her on another medicine over the next week. In January we will meet with the neuro at Duke to evaluate this new medicine and discuss a possible EMU admission.

We would appreciate prayers for this transition. We are praying that:

  1. These big seizures will STOP.
  2. The reaction she is having to the Lamictal will cease.
  3. Her body (and temperament!) will respond well to this new medicine.
  4. We won’t see an increase in seizures when we stop the Lamictal tonight and transition to the new medicine.

We know God is able to answer these requests, and that in all things He is always good. Thanks for praying and believing with us!

Change

So…

I haven’t posted an update on here in close to four months. I’ve started to multiple times, but I never quite know what to say.

In four months, the life of our family has changed drastically. A new home, new job, kindergarten, high school… big life changes. It’s been a season of transition and adjustment.

For the most part it has been good. It always comforting knowing that you are where the Lord has placed you, and we know this is where He wants our family to be right now. However, change, even good change, is still change, and it hasn’t been without its difficulties. We are finding that the stress of the last few years has taken a toll on all of us in different ways, and we are working through some of that as a family now.

Harper has done well with all of the upheaval, and loves the new house and her new school. She is super excited about kindergarten and new friends, and we are so proud of the progress she has made. It isn’t perfect and she has her struggles, but she doesn’t give up.

Over a month ago we did some road-tripping to Duke again for a check up and to have an ambulatory EEG study done, which means she was hooked up to the machine and we carried it home for the weekend… sounds like a nightmare for a five year old, right?

Well, let me just tell you once again about the power of prayer. We spent a lot of time praying over that experience, and that girl rocked it. She was completely amazing and handled it far better than I would have. She was patient and cooperative and did not complain the entire weekend.

We finally got the results of that test today. It’s never a good feeling when you get a call from the nurse who wants to schedule a time for the doctor to call you because she wants to personally discuss things. In our experience, personal conversations with doctors after tests don’t tend to lead to good news.

Basically, Harper is having constant misfirings in her brain, particularly from the areas that have been affected by the cyst, hydrocephalus, and earlier hemorrhage. These are not full blown seizures but little “blips” that shouldn’t be there. They are much worse when she is sleeping.

The study also indicated two significant seizures in those few days that we missed- they both occurred while we slept.

This was not the news we had hoped for, and it means more changes on the horizon. Medicines must be increased yet again, a process that will take about a month because of the potential dangerous side effects. After that, they will evaluate how things are going and the next step will be a hospital admission at Duke for an extended study.

My heart is heavy today as I’m processing this. I have all faith in my God as Healer, and I know without a doubt that Harper’s life is in His hands. I know His plans are good, and I know He isn’t finished with our family.

But right now, in this moment, I’m sad. I say that to encourage some of you out there. So often as believers we feel that we can’t feel sad, that we always have to put on a smile and say that everything is okay, even when it’s not.

That’s an exhausting mentality. We live in a broken and fallen world, one that we are in but not of. There will be bad days. There will be sad days. There will be pain and sorrow and heartache and uncertainty. And it’s okay to admit that and feel sad sometimes.

But it is temporary, praise God! No matter how sad I feel in this moment, it won’t last forever. I may feel beat down today, but the ultimate victory has been won. “Weeping may tarry for the night, but joy comes with the morning.” (Psalm 30:5)

But this I call to mind, and therefore I have hope: The steadfast love of the Lord never ceases; his mercies never come to an end; they are new every morning; Great is your faithfulness. “The Lord is my portion,” says my soul, “therefore I will hope in him.” The Lord is good to those who wait for Him, to the soul who seeks Him.” (Lamentations 3:21-25)

Today’s adventure

Today was an adventure.

Harper had an MRI scheduled in the fall. It’s been two years since her last MRI, so this was going to be a routine follow-up to check on her progress. However, when her neurosurgeon heard about her changing symptoms, he decided that we needed to go ahead and get the scan done to be sure there are no changes with her cyst or the fluid in her ventricles.

So, we loaded up after church yesterday and made the trek to Durham. We had to be at the hospital first thing this morning for the scan, and our goal was to try to get it done without sedation this time. We did lots of talking and sharing with Harper about the process and explained the MRI machine and she seemed to be on-board… until we actually walked into the hospital room and she saw the hospital bed and monitors.

Apparently Harper has developed some serious hospital-anxiety, and the sight of a hospital bed and monitors throws her into hysterics, even if it’s just on tv. She cried her way through the MRI video, cried as we walked down the hall, and cried as they showed her the really cool beach-themed MRI room complete with a sandcastle MRI machine. When she threw herself in the floor screaming over them placing “magic lotion” on her hand (numbing cream just in case they needed an IV), the doctor came in and said there was no point in trying to get her in the MRI machine without sedation.

In the past, sedation for this scan was done with a new nasal spray that is amazing because it requires no IV and doesn’t take long to recover from. But unfortunately it didn’t work well for Harper last time, so the doctor told us IV sedation was required for today. However, given the emotional state Harper was in, they could not attempt an IV without first getting some chill-out medication in her system, so we started with an oral medicine- it took a little bit to kick in, but once it did, it really kicked in, and she was finally mellow enough for the IV process.

And what a process that was. The first nurse tried the first hand- and tried, and tried. The second nurse tried the second hand, but after one missed attempt decided it was time to call in the special team with ultrasound equipment. They finally gained access in her forearm and got the sedatives pumping, but she didn’t go down without a fight and it took a bit longer than expected for her to fall asleep.

In true Harper-fashion, there was a bit of a scare right after she fell asleep. She decided that breathing was optional and began to desat, so there was a little excitement as everyone rushed to give her oxygen and get her positioned just right. Fortunately that worked and she went on to the scan, and then we spent a couple of hours in recovery before seeing the neurosurgeon.

And the verdict?

STABLE!!

The cyst hasn’t grown significantly, the fluid remains about the same, and therefore there doesn’t seem to be an issue with the pressure in her brain. This is great news from the neurosurgical standpoint, but doesn’t give an answer for these new seizures, so we keep pressing on.

I don’t know that I’ve shared a picture of Harper’s brain before, so I have one to share tonight:

I share it because this is a picture of what God is doing. So often we read of the miracles He worked in the Bible and think of them as ancient news, and have trouble relating it to today. And I personally take for granted so often just how much He is doing each and every day.

All of that white space in this image shouldn’t be there. The thinner white strip on the left side of the picture is fluid accumulation in an enlarged ventricle. And that huge white blob on the right side? That’s a cyst and dead brain tissue. All of the white in the image is taking the place of what should be functioning brain tissue… and amazingly enough, this is an incredible improvement from what this image showed five years ago.

What does that mean? It means this girl really shouldn’t be able to do much of what she does. She walks. She talks. She laughs. She sings and dances and plays and learns. She can see and she can hear and every day with her is a day that God is working mightily. It is a miracle.There are moments that I get overwhelmed or I feel sad that she struggles in some way. There are times that I think it isn’t fair or I get scared for what the future will hold. Today I felt all of those things (and more) at one point. But tonight as I look away from that MRI picture and look instead at the bigger picture, I am reminded once again that we serve a God who sees the whole picture. He sees and He knows and He has plans far beyond what I can dream, and in the meantime He has given me so very much to be thankful for. ❤️