If ever a picture could sum up a day, this is the one.  Harper was discharged from the Duke PICU yesterday, and while it is a blessing to be in our own home, the challenges are not over just yet.  She is miserable- her chest and tummy are red and splotchy from the leads for the monitors, her forehead has marks from the EEG leads, and her hair is tangled and full of glue (and we aren’t putting her through the task of trying to get that out yet!).  She’s wobbly and unsteady on her feet, yet fiercely independent, so we’ve had lots of bumps and falls.  And she screams, and screams, and screams, sometimes because we look at her, sometimes because she doesn’t get her way, but most of the time for reasons we cannot figure out.  

For now we’re blaming all of this on the meds, and hopeful that it won’t be a long lasting effect of the seizure she had.  We met with the neurology team before we came home, and they too are hoping this is just a medicine side effect that will resolve in the next week or so.  They also took the time to really talk with us openly about Harper and answer questions we had.

That was a slightly difficult conversation.  The doctor in charge apologized for seeming so pessimistic, but said that she wanted to be very real with us about the situation, and she was very frank with us. There are some real downsides to what we learned.  They described Harper’s case as very complex.  We knew already the physical complexities of her brain- Hydrocephalus, scar tissue, and cysts don’t make for normalcy.  But her epilepsy is also complicated, not following a typical pattern or having an easy fix.  When they can localize where seizures are happening, they can use specific medications or even surgery.  But hers are random and unpredictable, so that really limits our options.  And at this point, she’s getting close to having to consider a third daily medication, at which point medication starts becoming less effective.  And, as the doctor pointed out, she is only four, so we have a long way to go still.

On the upside, Harper has done well developmentally thus far.  We aren’t having as many huge seizures.  She does at least have these “honeymoon” phases when they increase or add medications, so we do have good months.  There are more experimental options that we can consider as we progress- diet and supplements and such, but with her issues, those are things that must be done under a doctor’s close supervision, and we’ll cross that bridge when we get to it.  There is also more in-depth testing they can do through the epilepsy clinic there, but we have had enough excitement with testing for a nice, long time.

So for now, we wait.  We take it one day at a time, sometimes an hour or a minute at a time- we have to.  It is impossibly overwhelming to think ahead to her future when you process what the doctors have to say.  But God has a bigger plan.  We’ve heard the negative talk before.  We were told she wouldn’t survive birth.  We were told she may not make it through surgery, then it was questionable if she’d make it through the night.  She may not eat, she may not talk, she may not walk… we’ve heard it all, we’ve known the risks, but we also trust the One who formed her and numbered her days. And I don’t know if y’all have figured this out yet, but this girl is a fighter, a warrior whose story God is authoring.  

So, tonight, we get through the night, and we enjoy sleeping in our own bed.  Then we will take on tomorrow, one fit at a time.  We will count our blessings- such as she can carry on at home now without people watching her every move, and she still has that feisty, fighting spirit that’s carried her through so much.  And we will continue to look to the One who holds all of our days in His hand.  

I have tried to write this update multiple times today, and multiple times words have failed me.  This tiny hand in mine has been symbolic of so much today… grasping for help, hanging on for dear life, clinging to hope.  

As we awoke here at Duke this morning, it was this little hand reaching for me that opened my eyes.  And as my eyes opened, I knew something was wrong.  I had sensed it coming all night as Harper was restless and kept waking and reaching for me, and it finally all culminated just after 6 a.m.  She was most definitely seizing, so I hit the button for the EEG study and started monitoring her.

Within a minute there were nurses in the room with us, watching and preparing and calling for more help.  It all went by quickly, and it didn’t take long to realize that Harper was in trouble.  They gave the first dose of IV rescue meds and the seizing slowed enough for her to make eye contact with me and reach out for my hand, but then she was gone again.

There was a mad rush of events that seemed chaotic yet organized, and we ended up in the PICU (pediatric intensive care unit).  Harper’s heart rate stayed high and she began to desat, so they were having to hold her head and neck to keep her airway clear and give her oxygen through the cannula with talk of possible intubation, and she ended up with three doses of the first rescue med and one dose of a second, stronger med before things began to calm down.  

It has been a long, wearisome day as we are still in PICU.  She was cleared to move back to a regular room this afternoon, but there’s no space, so we are here overnight.  She is having a difficult time- obviously a seizure that lasts 30-40 minutes causes side effects, as does all of the medication.  She is angry and has spent hours screaming.  She hasn’t rested much or eaten much, isn’t able to walk yet, and while she is comprehending and talking, her speech is a little off still- she’s mixing up words and slurring a bit.  But these are typical side effects, so we are optimistic that they will resolve with a little more time.

This big scare has basically ended the eeg study, and further stumped the doctors.  The seizure this morning started again on the right side of her brain (as was not expected), but it started in a completely different area of the right side than the last.  And like the last, it moved across her brain to the left side and affected different areas.  So they don’t know what is causing them exactly since it doesn’t fall in line with where her brain damage is or where her cysts are.  And this complicates treatment- the seizures are not localized and not following a pattern.  This eliminates the surgical option- as much as we didn’t like the idea of surgery, it was a promising fix down the road.  

There have been a lot of doctors collaborating and following us today, and they even mentioned possibly sharing her case at their epilepsy seminar.  We know she’s in the best hands as far as medical care, and especially in the best hands as she is held by the ultimate Healer.  But as we’ve watched her endure so much today and heard her ask the nurses, “Will it hurt?”… as we’ve been apart from our big girls and wiped their tears… as we’ve stood helplessly by and asked questions the doctors cannot answer… we are weary.  

Tonight I’m sitting by Harper’s bedside and Kirby is sleeping in the waiting room.  Harper’s daily meds have been increased again, just about maxing her out, and she’s being put on a third medication for a few days to help her recover and ward off any more seizures for now.  If all goes well overnight and in the morning, they are hoping to be able to send us home tomorrow afternoon or Wednesday, and then we will follow up with her regular neurologist up here to discuss any other options or new developments.

We’ve been overwhelmed by all of the messages and encouragement you’ve sent our way, and we are so thankful for your prayers- they’ve carried us through a long day, and we look forward to seeing more answered prayers in the morning. ❤

We’ve been here for three days now, and it feels like three years.  Harper is over it.  She’s grouchy and doesn’t like the food and has played with all of our toys and games, and all of the leads stuck on her have broken out her skin and hurt, so it hasn’t been much fun.  But, she did get to see her big sisters last night and had some playtime with them, and Daddy stayed with us last night so new faces have cheered her up a bit.

Last night they took one of Harper’s daily meds down to a half dose (and left the other med as normal).  About 20 minutes after she had fallen asleep she had a weird spell that we thought may be seizure related.  The neurologist came in this morning and confirmed that it was a seizure, and that it actually lasted longer than we thought- she seized for a few minutes before we even saw anything.

So, good news that we finally got some data.  But there’s bad news- it was nothing like they anticipated.  Since Harper has a dead section of brain tissue on the left side of her brain and the right side of her body is her weaker side, it’s always been assumed that her seizures were coming from the left side.  However, this seizure last night started on the right side.  But then it oscillated, moving side to side and across her brain into different areas.  Again, not the distinct answer they were hoping for and not what anyone was expecting. 

Because of this unusual pattern and because Harper has had such large, out of control seizures in the past, the neuro team is not comfortable weaning back any more on the meds today.  They want to leave her on the half dose of Trileptal and full dose of Topomax for another 24 hours and see what happens.  However, they have decided that they need to see a lot more, so in the neurologist’s words, we are here for the long haul.  

This is not the greatest news today.  A longer stay than anticipated and the fact that much of her brain is being impacted and that she’s having seizure activity we don’t even see is a lot to take in.  But, God never said life would be full of sunshine and rainbows, right?  Instead He promises us that He walks with us through the dark and the unknown.  And He promises that His plans are ultimately for our good.  With that kind of friend by your side and those promises to look forward to, there’s not much room for fear or doubt.  
Thank y’all for praying for our tough little girl and all the words of encouragement you’ve been sending our way.  Please continue to pray for wisdom for the doctors, and for peace and happy moments for Harper as we keep pushing forward.  ❤

Harper sends love from Duke on this dreary Thursday afternoon.Here’s our latest update: As you can see from these heavy eyes, someone is tired. It’s tough to sleep in a hospital, particularly with all this garb on!  Harper did great yesterday, being very patient and brave through getting attached to all the monitors and getting an IV placed.  She had a calm night with no seizure activity that we noticed.

We met with the entire neuro team this morning.  The plan for now is to just keep waiting.  Given that she’s had so many seizures lately on all of her meds and the fact that without meds her seizures get out of control quickly, they are hoping to catch some activity without weaning her off of anything just yet.  However, her daily medication may be adjusted starting tomorrow evening if she doesn’t have a seizure.

The head of the neurology team also explained why this study is so important.  Harper is already on pretty good doses of two anti-seizure medications, yet every few months she starts to have seizure activity again.  Basically, at the rate she is going, we face the risk of medicine being ineffective.  They need to see if she will be a good candidate for surgical options.  If they can determine what area of the brain the seizures are coming from, they will know what options are available.  Harper has a section of her brain that is dead, and if the seizures are coming from that area, they could possibly remove that portion of her brain completely.  

These are hard options to think about, but we’ve always known that we live in the unknown- at least to us.  But we serve the One who does know, and we trust His plans for our girl.  Please continue to pray that the doctors will get the information they need and that they’ll have wisdom from above in choosing the best treatment options now and in the future.  And pray for a cranky Harper who is growing weary of wires and monitors and ouchies!  We will update more when we know more ❤

Well, what can I say?  The blog has been silent the last couple of months.  There have been things to share and updates to make, but to be honest, I just haven’t had it in me to write words.  I’ve been dealing with some things physically, but also spiritually and emotionally as well.  That tends to happen when you go through physical ailments, doesn’t it?  As the Lord has been working in my heart on some big issues, for once I found myself unable to write about it.  Usually I turn to this blog to pour out my heart and process things, but this time it’s been a little too personal to share with the world.  I’m a pretty real person, open about my failures and shortcomings, but we all have that really yucky stuff deep inside our hearts that we just don’t like to face, let alone tell anyone about.  So, as I’ve worked through that, I’ve been away from the blog world.

But now I’m back, not really ready to share any fabulous wisdom or insight, but I will share some updates about our family.  When I last posted, we were preparing to take Harper to Duke for her extended EEG testing.  And as I post now, almost two months later, we are doing that very same thing.  I grew very ill toward the end of February, and by March landed myself in the hospital a couple of times, complete with IVs and medications and surgeries (oh my!).  Good times, good times.  So, we had to postpone Harper’s testing as I was unable to travel or stay with her, and now that I am finally back to normal (or as close to normal as I’ll ever be), we are ready to make the Duke trip.

The timing could not be more perfect, just another sign that God’s hand is in everything- Harper’s seizure activity has been picking up rather rapidly over the last several days.  Fortunately there have been no big seizures and no need for rescue medications, but she’s had seizures three days in a row now, including three just this afternoon.  All of them have come during her sleep so far, and have lasted just under a minute.  With this progression, we’re seeing some changes in her moods and behavior, and also noticing a lack of coordination and some odd motor skill things, which again raises the question about where her seizures are coming from in the brain and if that could cause long-term issues with her motor skills in the future.  These are things we’ve discussed in the past with her therapists, but there are just so many unknowns and so many variables to take into consideration.

But, that’s why we are proceeding with the testing this week.  If all goes as planned on our end and on Duke’s end, we will check in on Wednesday afternoon and Harper will be continuously monitored by the video EEG machine- that means lots of wires and probes and being confined to a very small space, which will be interesting with a four-year-old.  She will have an IV placed so that they can administer rescue medications quickly, and there is a possibility that they will wean her off all of the anti-seizure medicines she takes daily to increase seizure activity.  This is the part that I hate the most as Mommy- knowing that they will try to get her to have these seizures that we so hate to see, and that there may be the need for IV rescue meds.  Sitting and watching your child go through all the procedures is hard enough, but watching her lose control and suffer makes it infinitely worse.

This is all for her good, though.  We want to see what types of seizures she is experiencing, just how frequently she’s having seizure activity (as there may be more than what we see), and what part of her brain is being affected.  This will help the doctors better tend to her needs by ensuring that she’s getting the right medications at the right doses, and maybe help us become more aware of potential triggers or signs.

So, if you have time, pray for us this week.  I need my own health to stay in check so I can take care of my girl.  Kirby and the big girls will be holding down the fort at home without us (so pray for his sanity!).  We hope for a quick and easy admission, safe and uneventful travels, and a cooperative Harper when it comes to getting her IV and getting the probes and monitors hooked up- for those of you who don’t know her very well, she is a fighter, which is a wonderful thing and has served her well, but it can lead to some intense battles if she’s not in the right mood!  And we actually want to see some seizure activity while we are there- the more they see, the more data they collect to help her and the faster we get to come back home, but with that goes a need for emotional strength for the mama.

I’ve said it so many times, but it’s never enough… thank you all for following our journey and praying us through.  We serve a mighty God who hears those prayers and answers time and again and gives us the strength we need to stay the course.  “Three times I pleaded with the Lord to take it away from me.  But he said to me, ‘My grace is sufficient for you, for my power is made perfect in weakness.’  Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.  That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties.  For when I am weak, then I am strong.” -2 Corinthians 12:8-10

Hello to all our friends and prayer warriors!  I wanted to take a quick minute to give you the latest on Harper…

First of all, she’s been doing great overall.  We haven’t had to make a trip to the emergency room since August, and we haven’t had to use any of our back-up emergency medications for her seizures since mid-October!  That is huge improvement from what we experienced last year.  

That being said, she has been slightly “off” lately.  There have been little things that we notice because we are with her all the time, but I worry about being an overly cautious alarmist.  So I’ve just been making mental notes and letting things roll along.  But the list has been growing, so I decided it was time to at least let the neurologist know what we’ve been seeing.

When Harper’s meds are increased, we always go through some adjustment period.  Over the last few weeks, she has been a bit wobbly again, so we’ve seen more bumps and falls, one of which resulted in a pretty rough bump on the head.  She’s been more lethargic than usual, and I have to really push her to get up and play.  She tells me several times a day that she’s tired, and prefers to just sit on my lap if she has the option.  Her moods have been rough, complete with lots of screaming and growling and making grunting sounds instead of words- but she’s also an almost-four year old so I’m sure that plays into the tantrums!  We’ve had more trouble with being out and about lately- she has been shutting down in places with lots of noise or people, not handling her classes at church as well, and melting down in stores.  We’ve also seen several spells where Harper spaces out and doesn’t seem to hear us or know what’s going on- this could be seizure activity, or it could be something like sensory overload.

With these changes, the neurologist has decided that it’s time to do a prolonged EEG study.  This means that on March 6, Harper will be admitted into the hospital at Duke and hooked up to the probes and closely monitored.  I will be staying with her, and we will be there for 3-5 days depending on what the tests show.  The goal is to determine if she’s having seizure activity with the meds that she’s on, and if she is, to figure out what kind of seizures she’s having and what parts of the brain are involved so that they can be more specific with her treatment. 

While we would love for Harper to never have any seizure activity, this will be the one time we would want it to happen.  It would be great to get some clear direction and have her medications tailored more specifically to her needs.  The ultimate goal from the neurological standpoint is to get her seizure-free, so we are praying these tests will get us closer to that goal.  

We appreciate your prayers over the next few weeks as we prepare for this hospital stay.  It means mommy will be away from the big girls for a few days, and Harper will have to deal with hospital life and be cooperative with the probes and wires all over her head.  And of course the biggest prayer is that this won’t be a waste of time, that the testing will yield results that can be used to improve Harper’s health and well-being.  Thank you all for being a part of our team!

Y’all, I am tired.  We were on the road at 7:30 this morning, and made it back to our house with all of our children (one of whom is sick) around 8:00 tonight.  We’ve had our share of doctors, tests, needles, traffic, and fast food… But it was a productive day!

Harper’s first appointment this morning was with her ENT at Duke to discuss her sleep issues and her oversized tonsils.  Fortunately, while she does have very large tonsils, her number of sleep apnea episodes has actually decreased from her first sleep study to this last one.  Because of that, they do not want to do surgery at this point, which was a huge relief for this mama!  Although a tonsillectomy is a routine procedure, any surgery is a bit more complicated with Harper’s history and her medications and her seizure risks, so avoiding that is a huge praise.  For now, we are going back to using a nasal spray before bed every night to see if that will decrease swelling in her airways and help her to breathe a little easier at night (and hopefully sleep better, too).

After the ENT, we saw an audiologist for a hearing test, as was recommended by the developmental pediatrician.  We didn’t have any concerns, but he wanted to be sure that her hearing on her right side hasn’t been impacted by her seizures since they’re always on that side of her body.  Of course, she passed with flying colors and had a pretty good time playing games with the tester, so all good news there.

We had a break for lunch and a stroll around Duke’s campus before going to the neurology clinic.  We have been feeling very positive about Harper’s progress.  She’s only having about one seizure a week, and those are very small compared to what we’ve seen in the past- they’re only lasting about a minute and ending on their own, and we haven’t had to use a rescue medication in a few months now.  While this is definite improvement, the neurologist wants to see her 100% seizure free.  So, we are increasing her Trileptal dose once again.  Once we get to a place of seeing zero seizures for a few months, they would like to start weaning her off of the Topomax because of the negative side effects associated with it.  With that medication, Harper’s appetite is decreased, she is unable to sweat and therefore overheats easily (not easy to deal with in the summer around here!), she has ocassional hallucinations, and there is a risk for issues with her kidneys.  For now, it has to stay as it is for seizure control, but we will reevaluate in three months.  The neurologist also noted some change in Harper’s muscle tone this time.  She said the right side of her upper body was weaker and tighter than she had noticed before, so we plan to check in with her physical therapist regarding that.

Our final stop was the lab, which of course was the most unpleasant part of the day.  Harper is old enough now to be well aware of what’s going on at the doctor, and she is very compliant.  She offers her arm for the blood pressure cuff, sits still for weights and measurements, and does whatever they ask of her.  But she cried big crocodile tears today when they pulled out the needle for bloodwork.  She still sat still and let them stick her, but how my heart ached when she sobbed and said, “Mommy, I don’t like it!”

I am so grateful tonight to be home with my babies and my husband who walks beside me on this crazy journey.  We both had our moments today in the hospital as little reminders of unpleasant memories came our way- the helicopter that landed above us, that same helicopter that has carried our baby twice now… The smell of that hospital soap that we used to scrub away the germs before we could walk in to see our girl… The parents weeping in the waiting room… The lady giving behind-the-scenes tours to terrified expectant parents.  It can be so sad and so scary and so overwhelming.  

But we get to leave that place with our daughter, and come home and get back to our “normal” life.  I can never express enough gratitude to God for that gift.  I often end these posts with our latest prayer requests… Tonight I ask you to say a prayer for those families who didn’t get to leave the hospital with their sons or daughters today, for those who are walking hard journeys and need the strength that only He can provide, for those moms and dads who are weary and cried out and need some hope.  I’m praying that God will reveal himself in mighty ways to those families, and that we will all remember to give thanks for the gift of each day.

Being the lover of words that I am, I’ve really enjoyed the trend of choosing a word of the year.  Not that I’ve always taken a part in this trend, but I do love seeing the words that different people choose.  I do recall choosing the word hope as the year 2013 began- it fit a new season we were embarking upon as we had sought reconciliation in our broken marriage, as we had watched my mom battle and overcome breast cancer, and as we were looking forward to meeting our new baby girl in 2013.  Little did I know how much I would embrace that word over the next couple of years as my daughter was born in February 2013 with a barrage of medical issues that caught us completely by surprise.

So, the word hope took on a whole new level of meaning for me as my faith was tested and we walked a scary path into the unknown.  And then we had a year of joy as she made huge strides in her recovery and we started to live a fairly normal life.  We rejoiced and celebrated and got pretty comfortable with thinking all was well.  But then her seizures started.  And while things could be greatly worse than they are, it’s not been an easy road.

You see, as a mom, you have this crazy fear for your children.  I hate the word fear because it’s a word of bondage- fear does not encompass the victorious life we have in Christ.  Yet, somehow, no matter how hard you try, when you become a mom there is this hidden fear that just becomes a part of who you are.  These little people take our hearts and prance them around outside of our bodies for the whole world to see, leaving us exposed and vulnerable- and there’s not a thing in the world we can do about it.  It’s crazy and scary, yet beautifully wonderful as we grow in our understanding of how much God loves His children.

I experienced this once with my oldest, then again with my middle, and yet one more time with my youngest.  But with my youngest has come a whole new level of fear.  Because while I know that God holds my days and your days and her days, while I know He has great plans and His plans are for good, while I know that I simply must trust Him in all things… it is scary.  When you’ve seen your child dangerously close to leaving you and this world behind more than once, it evokes fear.  When you’ve found her unable to breathe on her own, when you’ve seen her seizing for hours despite the attempts by the doctors to stop it, when you’ve seen the images of her brain that just don’t make any sense, when you’ve been given worse case scenarios time and time again… it’s frightening.

I know how many times in the Bible we are told that God is in control, that it is a sin to live in fear and worry, that we need to give it all to Him… believe me, I’ve read the verses, I’ve memorized them, I’ve prayed them, and I’ve tried to live them.  And some days I feel like I’ve got it down.  But deep down inside, there is always this tiny little ounce of fear of what could happen, what may lie ahead.

I spent a lot of time on my own with Harper this past year.  My big girls started attending school instead of being homeschooled, and my husband had a lot of military time away due to training and deployment (and was literally gone half the year altogether)… So it was me.  And, honestly, it was a tough year for me on a personal level.  Harper didn’t have a terrible year with her illness- We had five ambulance rides to the ER and two hospital admissions aside from her regular visits and testing, so relatively speaking it wasn’t too overwhelming.

But it was the day-to-day living that wore me down… the work, the worry, the tantrums, the sicknesses.  I got accustomed to doing things on my own and relying on my own strength (which is always a disaster!).  I would catch myself dwelling too much on what could happen, questioning God and really struggling inside with some big questions.  It got easier and easier to pull away from the world and keep the emotional and mental struggles to myself- but it hasn’t been a great place to be in, and it certainly wasn’t how God intended me to live.

And so, as 2016 ended and we ushered in a new year, I really began praying and pouring myself into the Word more and more.  I began to realize that I needed more of Him and less of me, and that I needed to let go of some big things I’ve been hauling around.  Then, on the first day of 2017, I was holding Harper close during naptime as she fell asleep in my arms.  I rested as she slept, but the rest was soon interrupted as I heard the disruption in her breathing and felt the all-too-familiar twitching in her right side as she started to seize.  I watched the clock and watched my baby, praying for fast relief, and it came.  But in those moments, I caught myself fighting back tears because I don’t want this to be her struggle.  I want complete healing for my daughter.  I don’t want to live with so many unknowns.  No matter how hard I try to protect her and beat this for her, I cannot.  It is ultimately out of my hands, and I don’t like that.

Yet as I fought sadness and anger and frustration, God began to whisper into my heart just as He has been all along, and I heard three small words in the quiet.  Then again today, as I turned on the music, there it was, that same phrase… So, I am embracing these three words for the year 2017: It is well.  Because regardless of what 2017 may bring, it is well because my trust is in Jesus.  I face a sea of unknowns, but it is well because my heart belongs to the One who knows all things.  I don’t know how to fix everything or take away the pain, but it is well because His hands are mightier than my own.  I cannot understand the struggles of this world, but it is well because my God is in control. Friends, no matter what comes against us, it is well because our God is for us.  It may not always be the easiest truth to embrace, but my prayer for 2017 is that regardless of circumstances, the song of my heart will be, “It is well…”

It’s been quite a while since I’ve done a Harper update, so here we go.  Of course, no news is always good news.  We have avoided the ER since August, and haven’t had to administer a rescue medication since October- big praises!  There has been some seizure activity during this time, but it’s all been controllable up to this point.

We finally got a report back from the sleep study Harper had done in October.  There were no glaring issues or concrete answers.  She has mild sleep disordered breathing and mild sleep apnea, but since it’s mild we don’t have to take any immediate action.  There is a possibility of meeting with a sleep specialist at Duke, a decision we are praying over at this point.  So far we have two opposite opinions from the medical professionals on that, so we haven’t made a final call on that yet.

I also had a meeting to go over evaluation results with a developmental specialist a couple weeks ago.  We were referred by the neurologist for this, but there wasn’t much change as we already have services with both occupational and physical therapy.  Most of the results were no surprise, just formalities- she doesn’t show signs of ADD/ADHD, she does show some characteristics of autism but not enough to warrant concern, and it’s too early to tell about learning disabilities.  He said that it’s hard to tell with Harper how she will do with schooling or what setting will best fit her needs, so we need to be prepared for a lot of trial and error as we consider preschool next year (and of course elementary school down the road).  Her brain is a mystery, and she can make amazing progress only to be set back by one big seizure, so loads of unknowns.  Also, due to the fact that her seizures consistently affect one side of her body, he also recommended looking into an audiologist and opthamologist to be sure her hearing on that side isn’t being impacted and to keep an eye on her eye (her right eye tends to get “lazy” post-seizure, a new trend recently)… All recommendations that we are considering but not sold on quite yet.

Harper has made a lot of progress in therapy.  She is able to take stairs like a big girl now, step over step with little assistance.  She is jumping with two feet fairly well, getting better with hopping, and is even making progress with pedaling.  She has good days and bad days with her balance and coordination, and is hit or miss with her social skills depending on her mood (typical girl!).  Motor planning is still a weak area, and we’ve also noticed that she has a hard time with remembering multi-step directions and sequencing.  We are still working on strengthening her core, and on getting both sides of her body to be a little more equal in strength- her seizures greatly impact that.  However, she has gone long enough without a major seizure now to fully potty train!  (Although we are still using training pants for the accidents that occur with seizure activity).  If she continues to fend off the big seizures and move forward, we may be able to wean back on some of her therapy services after Christmas.

So, I think that’s the big stuff.  We have some decisions to make- sleep specialist, audiologist, opthamologist, preschool options… But we’re in no rush.  She’s stable and we’ve gotten used to the new normal of “mild.”  There are issues, but they’re all mild at this point, and mild is good compared to where we’ve been in the past!  As far as prayer concerns for those of you who keep Harper in your prayers, please pray that her seizures will continue to be mild so that she can continue to progress, that we make the best decisions regarding all the medical advice and opinions we have on the table, and pray for her health and healing this week as she is battling a nasty upper respiratory infection.  God continues to do great things ❤️

Happy (or not so happy) Election Day, friends.

I’ll be upfront with you all- I don’t do politics.  I just have never been able to wrap my head around it all.  Between all of the legalities and rules and corruption and scandals and name-throwing and blame-throwing and he-said-she-said banter, my head spins, and I just feel lost in the shuffle.  Politics don’t really fit in with my whole love Jesus, love people, and everyone play nice vibe.  So I smile and nod when people start sharing their opinions, and then I go home and read and pray and try to make some kind of sense out of this crazy world.

And, in the midst of this highly charged and divisive election that is upon us, here’s what I have found- I can’t make sense of this crazy world.  Because we live in times of chaos and confusion.  The lines between right and wrong have been greatly muddled, everything is open to debate and contradiction, and we’ve become as a whole a society of me-seekers.  Everyone wants to get ahead, everyone wants first place, everyone wants more than the person before them, and everyone expects to be right.  The only humility we seek is a pretense in hopes that it’ll make us look good or help us get ahead in the long run.

Like so many others with this election, I struggled to find the perfect candidate.  You know, the person in whom I had complete confidence would lead our country in the right direction, the one who would stand up for right and wrong, the person in whom I could place hope and trust for the future of my children…. And the struggle was real, because the truth is that there is only One who is perfect, One in whom I can place my confidence, One who embodies the very essence of hope and trust- and His name isn’t on a ballot.  His name is Jesus.  I haven’t been called to worship and serve the next President of the United States.  I’ve been called to worship and serve the Creator of this universe, the one true God.

And regardless of what the polls reveal tonight, regardless of who sits in the Oval Office, regardless of what transpires as a result of this election, Truth will still prevail.  My God’s plans for me, for my children, for my family and friends, for this nation, and for this world will not be thwarted.  He will continue to be Lord over all.  He will continue to sit on His throne and to reign eternally.  The victory has already been won.

So, tonight, if you’re placing your trust in the polls, in the White House, in a man or in a woman, I challenge you to rethink that choice and put your trust in Jesus.  I promise you, He won’t fail.  His promises are eternal and His plans are for good. And if you already trust Him and have been praying today for our leadership and our country, I challenge you to KEEP PRAYING.  Tonight isn’t the end- we’re simply turning another page.  We need to be a nation on our knees far beyond Election Day.  Our leaders need our prayers, our nation needs our prayers, and our children need our prayers.  

Much love to you all… May you find great peace and rest tonight in the King of Kings ❤️