Moms, when you have that feeling that something just isn’t quite as it should be when it comes to your children, trust it.  I am learning more and more that I am more in-tune with my kiddos than I think, and it’s always better to err on the side of caution.

We’ve had a rough past couple of weeks with Harper.  I had started to notice small things with her- she struggled with climbing up and down stairs, was uneasy on playground equipment, and started having more falls and kept bumping into things.  Then the behavior issues started.  She’s been super aggressive again, and prone to screaming spells- not the typical three-year old tantrums (although there are plenty of those!), but she also has spells of just pacing in circles and screaming for long periods of time.  She has been a little more apt to shutting down in large crowds or loud places, and then last week the small seizures started again, the first of any kind of seizure activity in about two months.

I have a tendency with Harper to do one of two things- be overly paranoid and question every little difference I see, or ignore things and deny that she has any special needs.  I go from one extreme to the other, and here lately I’ve done more of the ignoring and denying.  She is so smart and funny, such a ball of fire and full of joy and energy, and it is easier for me to chalk up the discrepancies I see as “quirkiness” and just go about our “normal” life as much as possible.

But this time deep down I couldn’t shake the feeling that I needed to ask some questions, and while I was hesitant to reach out, I did finally speak with some people and the decision was made to start with a physical therapy evaluation.  We went today, and a part of me was clinging to the hope that I was being overly cautious.  I really felt that the evaluation would reveal that Harper has no issues other than an over-protective mother.

Unfortunately my gut instinct was right.  It is time to restart weekly therapy services.  We sat down this afternoon and have developed some goals to start with for physical therapy, with the understanding that occupational therapy may be in our future again as well.  And I’m not going to lie- once we got in the car to go back home, I had a moment.  While I am thankful that Harper is able to get what she needs before she falls even farther behind, and I’m grateful that she’s overcome as much as she has in her three years of life, it’s never easy to be told that your baby needs help.  It’s hard to be told that there is a problem, no matter how many times you hear it (and by now you think we’d be used to it!).

No, this isn’t the end of the road, and in the grand scheme of things it’s really a minor setback.  It’s nothing that we haven’t been told to expect as Harper grows, and things could be far, far worse.  Her seizures are still under control at this point, but if they continue we will have to consult with the neurologist again to be sure we aren’t missing something.  She hasn’t lost any skills yet, which is remarkable for the intensity of the seizures she’s had. She just isn’t moving forward on her own as smoothly as we had hoped.

We are learning that Harper’s condition is going to keep us in a constant state of learning.  We never can get too comfortable, and we certainly cannot predict what will happen in the next few hours for her, much less years down the road.  But she’s a fighter, feisty and determined, and I know this is just one more hurdle for her to make her way over one way or another.  God has big plans for this kid, and we’re just along for the ride, trusting Him every mile of the journey.

I almost have to laugh at how many times I start to feel “normal” and things get calm and easy and comfortable- and then Harper shakes it all up again.  We had another one of those weeks this week.  We made it just over a month with no seizure activity of any kind, no fevers or illnesses of any kind, and consistently getting her to take all of her medications every day.  It was a dream, and it was lovely, and I got a little too comfortable with the normalcy.  We were able to go out and do things, be a part of the real world again, and we even started her back in her Sunday school class with other children, let her sleep in her own bed again (but still in our room of course!), and did a little traveling (although not too far away!).

This week the germs hit.  She developed a cold, which quickly progressed into croup and a couple of scary nights of breathing issues.  Sleeping and eating have been issues all week again, and we are back to not being able to get all of her meds in her system on a regular basis.  And when you put sickness, sleep disturbances, not eating/drinking as much, and not taking medications all together, seizure activity is expected.  In fact, we start seeing all the little signs that we are starting to recognize that tell us “a big one is brewing” (in the words of her neurologist).  Fortunately it hasn’t happened yet, so we are thankful for that!

We have seen both the pediatrician here in town and the neurologist at Duke this week.  She had a steroid treatment for the inflammation in her windpipe, and a chest x-ray due to the wheezing in her lungs- we haven’t gotten the results from that yet, but assuming no news is good news!  I was warned about this time of year and the outdoors with her- we’re already cautious with the temperatures since one of her medications prevents her from sweating so she overheats super easy, but apparently she also has some issues with bug bites.  They tend to swell and get infected easily and she had a couple of spots they were checking out, so we have to be extra vigilant with protecting her skin from that as well.

The neurologist visit went well at Duke- as usual she checked out just fine with everything.  I spoke with him some about the long list of diagnoses on her chart to see if he could clarify some of those big words for me… Basically, at this point, Harper is considered to be epileptic simply because she has had so many seizures.  In her case, she doesn’t have seizures because she has epilepsy- she has seizures because she has brain cysts and hydrocephalus and areas of brain trauma, so she has epilepsy because she has seizures.  In addition, she has a tendency to have what they call “status epilepticus,” which means a seizure lasting longer than fifteen minutes.  She has had a few of these, and they are life threatening, so her seizures have to be treated with urgency because she has shown that once she gets started it can be very difficult to stop.

As of right now, the combination of medications Harper is on seems to be working well, so we are staying with it.  However, we did discuss two small changes.  First, he prescribed another medication for us to use on an as-needed basis.  This one we can use for a few days when Harper is sick or when we see those signs of a big seizure coming to help prevent major issues since illnesses so much lower her threshold for fighting them off.  The second change was the best news of the whole trip- he said that he would send our “sprinkle” medicine to a compounding pharmacy!  We were so excited about this- Harper does great with liquid medications, but this one sprinkle tablet has been a constant source of stress in our home for months now.  However, once we got back home, we learned that our insurance will not cover the compounding.  We have decided to pay for one month out of pocket to see how well she takes it, and then take it from there.

So, an eventful week… We stretched our limits a little too much as she did so well and learned that we have to back way off again.  She just seems to catch germs so easily, and then when she catches them she gets pretty sick pretty fast and holds on to it for a while.  It can be so deceiving- she is so wild and happy and full of life and you’d never guess that she has any special needs of any kind when you see her, and even we tend to forget when she does so well for so long.  But behind the scenes there are these little things that we have to remember to pay attention to- keeping her cool and hydrated, protecting her from simple things like bug bites, making sure she gets enough rest and sleep, not letting her get overstimulated, pumping all those meds, watching germ exposure, and of course always watching out for that head of hers!

We’re always learning there’s never a dull moment around here, and this week has been a big reminder to me of the importance of always praying that hedge of protection around my children.  Because no matter how hard I work to keep them safe, I can’t protect them from everything.  I can’t be everywhere, I can’t ward off all the bad things, and try as I might, I just can’t be Superwoman.  But, they have a heavenly Father who can protect them from everything, who is everywhere, who has defeated the bad things, and who is greater than Superman… So the best thing I can do is place them in His hands.

This has been a strange week of adjusting for us.  Earlier in the week we noticed some swelling and redness in one of Harper’s feet that began to spread.  I thought maybe she got bit by something, but as it turned out she had developed cellulitis.  We don’t know if it started from a bite she had before or if it came from the multiple IV attempts they made in that foot in the ER last week, but at any rate, we added antibiotics to her daily medicine diet.

When we are asked how Harper is doing at this point, the answer is, “Good.”  We have made it a week now with no seizures, so that is awesome.  However, no seizures comes at a cost- all of those meds. This new combination has greatly altered Harper’s moods.  She is back to being very cranky and aggressive.  She cries- a lot- and hits and throws things and becomes very defiant.  I know that she’s three- I’ve survived two other girls through the terrible three’s!  This is different.  She’s pretty tired most of the time, but is having a more difficult time falling asleep again, and is fairly restless when she does sleep.

We spend a good portion of our morning and evening trying to get the meds in her, particularly this week since we’ve added an antibiotic twice a day- that means she has to take two syringes of medicine plus two capsules of sprinkles, all twice a day, and she hates all of it.  She also has a very decreased appetite and doesn’t care to eat much of anything, even yummy stuff, so we don’t have a lot of options with hiding her meds in her food right now.  So we are back to brainstorming ways to get things in her, and dealing with the screaming and fighting (and having it spit all over us) when we just have to force her to take them.    I always thought medicine was such a simple fix for a problem, but between the battle to take it and the side effects of it, it’s anything but simple.

So, that’s where we are as we approach the weekend.  Feeling so thankful for no seizures and no damage from this last one, and adjusting to new normals of medication routines and unpleasant side effects and finding that balance between living and protecting her from germs (and keeping her from hurting other kids as her body adjusts!).

There have been moments this week where I have felt sad, frustrated, overwhelmed, and even lonely… But praise God, they were just moments.  Those moments come and then they go, and I’m left with the peace that surpasses all understanding- that comfort of a loving Heavenly Father who is with me through it all, who has yet to forsake me, and who never fails or disappoints.

The Lord your God is with you, the Mighty Warrior who saves. He will take great delight in you; in his love he will no longer rebuke you, but will rejoice over you with singing.   -Zephaniah 3:17

We are eastbound once again!  We had a very busy night at Duke as they ran tests and got Harper hooked up for the EEG (which was a battle to end all battles), but it felt good to have so many people focused on her who were in tune with her condition.

We had rounds with a team of eight doctors this morning, then a special neurological team of four, one of whom is our regular neurologist.  They had received conflicting reports about her seizure activity yesterday, which was frustrating, but we got everything straight and they decided that with her as stable as she was (and with so much medication in her system) there was really no need to make her stay up there.

So, the final verdict?  There was no sign of any new developments on the EEG, and once again despite hours of seizing Harper is showing no signs of brain damage from it.  She did suffer from status epilepticus (life threatening seizures that last longer than five minutes),  but they’re categorizing it as a breakthrough seizure, which could be triggered by a number of factors including not enough meds, too much medication, growth spurt or change in metabolism, low blood sugar (wasn’t the case for her this time), not enough sleep, or a virus or infection… In other words, lots of possibilities but we can’t tell for sure, so we are staying more aware of eating and sleeping habits and germ exposure.

We are adding a second medication twice daily now, and are waiting for lab results to see if we need to increase our current med.  Other than that, we keep our current emergency plan in place, and continue to pray for peace and complete healing.  We’ve basically been told once again that given her history and the trauma her brain has been through, this is just to be expected and we do our best to manage things.

We cannot say enough how grateful we are for all of you who walk this journey with us.  While this wasn’t exactly the answer we were hoping for, we are thankful that we once again get to take our girl back home, and that she has so many people out there that love her.  And God has given us a girl who is a constant reminder of the gift in each day, who demonstrates strength and fortitude in times of trial, and who exhibits the beauty of grace as she comes through challenges with smiles and love and forgiveness even when we have to put her through the most unpleasant of circumstances.  We are blessed far more than we deserve ❤️

I’m writing this from a hospital room at Duke after midnight, so please excuse my typos and mistakes, but I wanted to record the events of the last 24 hours while they’re fresh in my mind.  And before I get to the details, let me just say that we are absolutely OVERWHELMED at the outpouring of God’s love that we have felt… All of the messages and words of encouragement, hospital visits, offers of help, caring for our girls… And PRAYING!… We are a blessed family to have such phenomenal family and friends.

Now, the details on our day… I woke up shortly after 6:30 Wednesday morning to a rhythmic tapping on my back, followed by the guttural noises of Harper seizing beside me.  I called Kirby into the room and we started watching the clock and trying to get her to respond to us, and at one point she seemed to, so we hesitated on administering the Diastat.  We got her into the living room where she started to vomit and convulse again, so we grabbed the meds and called the paramedics.

By the time they arrived she seemed postictal, but in the ambulance her oxygen level started to drop, requiring her to wear an oxygen max.  We got right into the ER this time and saw a doctor right away, and his plan was to just so the usual bloodwork and keep an eye on her for a little while, despite the fact that I requested he call her doctor at Duke. However, Kirby and I began to notice that her eyes were shifting right and beading off and on, but they insisted she was fine.

After about an hour or so, Harper began vomiting- her eyes would flutter and bead like crazy, then she would commit, and this happened 5-6 times in a row before someone finally listened to us.  However, even then they decided to just give her Zofran for nausea… But they couldn’t give it to her because her jaws were completely clenched shut, and they finally believed us that she was seizing.  The doctor decided to call Duke, but told me that sending her there probably wasn’t an option.

The nurse started an IV, and within minutes Harper went into a full seizure.   They administered one dose of Ativan but no change at all, so they did a second dose and started an IV drip of another medication… And still no change.  Everyone began panicking as it continued on and her oxygen levels dropped again.  They did one more double dose of Ativan, and the full body convulsions subsided, but her right side and mouth continued to spasm for another hour.

We got word that Duke had Harper on their list as a priority patient, so she would get the first bed to come available.  She finally fell into a deep sleep, and was able to come off of the oxygen mask mid-afternoon.  She developed a fever and kept it most of the day, but woke up asking about her big sisters.  She was a little woozy and irritable, and it took her a while to use her right arm at all, but she became more and more like herself through the evening.

We left Wilmington in an ambulance around 8:30, and she was tough to deal with all the way to Durham.  They had her room ready for her, did the initial assessment, and now we’re settled in for hopefully a few hours of sleep before the doctors make rounds in the morning.

We have no idea what to expect tomorrow, but we feel confident that Harper is exactly where she needs to be right now.  She is in good hands here at Duke, but she’s in the best hands of our Heavenly Father.  Thank you all for praying us through the day…

Every so often you have to buckle down and do those things you really don’t want to do.  This evening was one of those times for me.  You see, while we’ve been facing some tough realities this past week, I’ve still been in a slight stage of denial, putting off certain tasks for later, believing that doing so was buying me more time.

But, as Harper had some mild seizure activity Sunday, and then had an “off” day yesterday, and then had a small seizure this afternoon, my husband informed me that he packed his “go-bag,” and I knew I needed to stop pretending and get prepared. (Although we are still steadily praying that we won’t need to actually utilize our preparations!)

So, I replenished the go-bag for Harper and me.  If you’re not familiar with that concept, here’s the scoop- I have a bag packed and ready to go at all times.  It has a day’s worth of essentials… Toiletries, change of clothes for Harper and myself, sippy cup, a spare blankie (if you know Harper, you get the importance of this!), bottle of water, pack of crackers, phone charger, hair ties, socks (another Harper thing), jacket, and my glasses.  It saves a lot of hassle for my family when I’m in the ambulance with her and they need to know what to bring to the hospital, and keeps us prepared to be gone for a day or two at any given time.

I also sat down with a fancy new notebook and recorded all the details I could remember about Harper’s seizures over the past month.  (This is where my blog came in handy!). It was a bit unnerving to see just the facts listed out with all the dates of what we’ve seen, big and small.  But now it’s all in a quick list for the doctor, compiled in a pretty little notebook that fits just right in her bag (as if all that cuteness somehow makes it all a little happier).

And now everything is ready and we just… Keep living.  We hope for the best while preparing for the worst, and try to go about normal day-to-day life the best that we know how.  Sometimes it feels like we are waiting for the bad to come, but that’s not how God has called us to live.  Instead, we embrace every moment, recognizing that every “normal” is in fact a beautiful gift, one that no one is guaranteed.  And as our journey has shifted a bit, I’m seeing more and more that there are even gifts in the “abnormal” as well… It just takes a shift in perspective.

Now, I would be lying if I said that I’m not a little bit scared of what lies ahead.  I don’t always understand the path I’m on, and there is a natural fear of the unknown.  It can be easy to wonder why my daughter hasn’t been completely healed yet- we’ve seen miracles beyond what we could ever deserve, but why not complete healing?  I can’t answer that… But I know and I trust the One who can.  I see Him at work still.  I feel His presence in a real and tangible way.  He’s there when I seek Him, and even on the days I feel like running in the opposite direction, He uses His people to reach me and draw me back.  I have been overwhelmed this week with encouragement and support in various ways from so many, and it has been a beautiful reminder of our unity as the body of Christ.  I’m ever grateful for His continued faithfulness, and thank you to those of you who are praying.  ❤️

Isn’t it funny how one moment, one phone call, one conversation can completely rock your world, send you spinning into this alter universe where everything seems uncertain and nothing makes sense?  I’ve been doing this for three years now with Harper, and you would think that by now I wouldn’t get shaken quite so easily.  I mean, at some point, it gets easier and you get used to the unknowns, right?

Honestly, I don’t know.  Maybe it does, and I’m just weaker than most.  Or maybe it does, but we just aren’t there yet.  Or maybe it just doesn’t… Doesn’t get easier, doesn’t get less scary, doesn’t get more predictable, doesn’t become less painful.  Maybe I’m a little bit like Charlie Brown who keeps going back to kick that football with hopes of a different outcome, only to find myself on the ground once more.

The past 24 hours have been draining.  After our hospital trip Monday, I spent the day yesterday tied to my phone, emailing and calling doctors and pharmacists to get everyone on the same page.  That may sound like a small feat, but it seriously took all day, and the final result was to increase Harper’s medication once again.  Based on the medicine levels in her blood tests, the doctor thinks that Harper is metabolizing her medication at a faster rate than most children.  More daily meds wasn’t really what I wanted to hear- and I’ll admit that I broke down and had a moment once we got it all straight- but at least it was an answer.

With that, I just kind of accepted that this is normal procedure and not a major thing, just a need to tweak meds again.  But then the neurologist from Duke called me for a more personal chat this morning, and gave us a big ol’ reality check.  After lots of questions and note taking, he proceeded to tell me that what we are seeing is not good… That these big seizures are coming too frequently, that they are very dangerous for Harper, that they shouldn’t be lasting as long as they do… That there is most likely a lot more seizure activity that we aren’t noticing… That he’s surprised (but encouraged) that we haven’t started seeing evidence of delay or brain damage yet.  It was a bit of a sucker punch to the gut, another moment that sent me reeling.

That being said, we are making some changes.  He wants us to give this new dosage a shot, but her next seizure will land us an extended stay at Duke- he said about a week for them to do extensive EEG studying to determine what’s going on and what course of action to take.  He was also concerned that we may not be able to wait until the fall to have our annual MRI with the neurosurgeon, but for now we wait.  In addition to the increased meds at home, we are changing our plan of action a bit- if she is seizing and it is more than a focal seizure, no more waiting five minutes to administer the Diastat.  It will be done right away, and we are to be sure we stay in close contact with him personally from here on out.

A lot to swallow, a lot to process, and a lot to pray about- but not a lot for God to handle.  He’s still got this.  Even tonight as my mind was tired and I felt pressed, He reminded me of His presence, of His hand on her as she giggled and danced and enjoyed life.  Yes, one moment can change everything, but each moment is a gift.