As we sit here like this, her head on my shoulder, her body perched on her spot under my arm, we try desperately to find a little rest, both of us worn out from our early morning.  But rest evades us as her poor little body keeps twitching, her muscles tensing and spazzing every so often as a result of the seizure activity that has plagued her today.

She spent last night in her big girl bed for the second night in a row… A request she made and I posted about on social media: She has her very own big girl room complete with her very own big girl bed- that she has never slept in. Because over a year ago she started having seizures, mostly when sleeping, so she’s slept in our room ever since. Until tonight. She asked me so sweetly if she could sleep in her big bed in her room, and I couldn’t tell her no. Because I never want to rob her of her independence. I never want to rob her of a normal life. I never want to make her feel that she “can’t” do anything because of her illness. She is a warrior, a child of God with a big purpose, and I never want her to doubt that. So, tonight she is a big girl, in her own bed in her own room… But mommy will be close by 😉

So for two nights she slept in her room, and for two nights I slept at the foot of her bed- a move that seemed silly to me at first, but proved to be the right move this morning.  Before dawn this morning she began to stir, and in my own sleepy stupor I placed my hand on her and slept on.  Yet in the midst of my dreaming I kept feeling her move ever so slightly under my hand, and eventually I woke enough to recognize the clicking sound she was making, the sure tell sign of a seizure in progress.

She had a series of cluster seizures for what felt like an eternity, but being cluster seizures they didn’t individually last for more than 2-3 minutes at a time with a 1-2 minute break between each one.  I was so thankful for those little breaks because I was able to get her to take her oral emergency medication rather than using the Diastat kit.  And it worked, keeping us out of the emergency room.

I spent the morning in contact with Duke and our pharmacy, getting everything taken care of.  There were all of these little signs and episodes that I had noticed over the past couple of weeks- things that seemed individually insignificant at the time, things that I tried to overlook and not make an issue of.  I do notice every slight difference in Harper’s demeanor, and I always worry about being too observant, worry that I’m making mountains out of molehills.  So I file these things away in my mind, but 99% of the time my premonitions are correct when it comes to her.  

After consulting with her neurologist about all of those things and this morning’s seizures, it was decided to significantly increase one of her daily medications, almost doubling it.  They had been hesitant to do such a big change initially due to the increased risks of side effects- dizziness, lack of coordination, balance issues, headaches, tremors, and nausea- but they now feel it’s necessary.  It will take a few days for her levels to catch up, so for the next three days we also have to take the emergency tablet twice a day… Meaning she will be highly medicated all weekend.  That isn’t exactly the answer I want, but it seems to be the best we can do for now.

I’m praying fervently that this works through the weekend, because the neuro also told me that if I see any further seizure activity she’ll have to go ahead to the hospital to be evaluated, and we certainly don’t want it to come to that.

I’m also trying hard to keep my emotions in check.  I’m tired.  We’re so very close to my husband returning home, for which I’m so grateful, but he’s not here yet.  I’m getting very little sleep right now, and I’m physically drained from the constant holding and touching and hitting and pulling.  I’m frustrated and angry- I hate seeing my daughter suffer.  I hate to see this malady slow her down, to see an illness try so hard to control her life.  I hate to see her withdrawn and quiet, without a smile on her face- that’s not my Harper.  While I’m proud of her for taking her meds and being such a trooper, I hate that this is her normal, that she has to spend her days so medicated.  And I’m scared.  Because she’s only three years old and it already takes so much to keep these seizures under control- how can she keep up this pace?  What does this mean for her future?  How can she have a “normal” life with all of these risks and meds and side effects and unknowns?

So I have a lot of emotions, a lot of concerns, a lot of questions… And not a lot of answers.  But there is one who not only knows and has the answers, but ultimately is the answer.  And that’s where I have to keep my focus. He is the great I AM, and though my flesh wants to fight against it, that is the only answer I need.  

So, this week has been quite possibly the worst week we’ve had yet during my husband’s deployment.  Over the past few weeks, my health has been declining, and by the end of this week it took everything in me just to get out of bed. On Monday, we kicked off the week in the doctor’s office for Harper, who had yet another round of cellulitis and needed antibiotics.  Monday night my budding gymnast had an encounter with a table, landing us in the urgent care office getting her foot wrapped and booted for the week.  Then I had a crazy doctor’s visit myself in which he told me he suspects two different autoimmune thyroid diseases, but also is concerned about and running tests on two suspicious looking nodules.  I had a (nearly) flat tire, spent countless hours sitting in traffic in the rain, my preteen got asked out by a boy for the first time ever (tragic, right?!), between my three year old and the dog who doesn’t care for wet grass I’ve cleaned more bodily wastes than I care to count, and a nasty cold started making its way through our home.  I was feeling a bit like Alexander and the terrible, horrible, no good, very bad day(s).

BUT, through this insanity, I have been extremely blessed by friends and family that have acted as the hands and feet of Jesus.  And that’s what prompted me to write this post… Because I have been asked dozens of times by wonderful people who want to help but don’t know how, and the truth is I really never know what to tell anyone when they ask what we need or how they can help us.  So, this week I observed, and I also reflected on the past few years as we’ve faced crazy circumstances the things that have been done for us that meant the most, and I’m recording my thoughts here- not for any of you reading, per say, but for myself to look back on when I see someone facing a season of need.  Here are three things we can do:

1. PRAY!  I cannot tell you enough about the power of prayer- there is such a tremendous feeling that comes over me when I’m facing crisis and I know my brothers and sisters in Christ are going before the throne of Almighty God on my family’s behalf.  I’m going to be honest- I have found in myself this strange inability to pray for us in the midst of trauma.  I have been on my knees by my daughter’s body in the hospital, weeping and trying so hard to find words to express my needs to the Lord… and not being able to speak.  That’s why I so often reach out to our prayer warriors in those moments to pray.  I know that God knows my heart and my thoughts and I don’t have to say a word, but there’s comfort in knowing that I have a family in Christ saying the words that I can’t find in those moments.  And in the day to day living with a daughter with special needs and the unknown and a husband who has been gone the last few months, my prayers sometimes feel a bit repetitive, or hurried, or whiny, so it’s been an encouragement to have friends lifting us in prayer on the regular ol’ hard days, as well.
2. Be present.  This one is huge.  We’ve had a lot of hospital exposure over the last three years.  We spent six weeks living at Duke, and it lifted our spirits so much to have people pop in to say hello, or bring a bag of goodies, or treat us to a meal.  From chaplains to pastors to friends we had not seen in years, everyone that took the time to just show up touched our hearts.  We’ve had scary moments in the hospital where people have just stood with us and held our hands and cried with us.  There have been times when all I could remember to do was breathe, but there were people present in our lives to meet needs I had forgotten we had.  And it isn’t just physical presence- texts and messages and emails and phone calls all make me feel a little less lonely.  (I think that goes for anyone living life!)  I have one friend who has contacted me pretty much daily during this deployment… even if it’s a simple text asking if I’m still standing.  I have learned that a simple text can go a long way!  When you’re in the middle of a battle, you don’t always remember who offered what help, and sometimes you’re so busy with the battle that you forget you’re not alone.  Presence is important.
3. Just do.  Some people (present company included) have a difficult time asking for help.  There can be different reasons for that- not wanting to admit they need help, not wanting to be a burden or nuisance, not really knowing what kind of help to ask for, or not having time to even ask for help.  So just do something.  Take a meal, give mom a break from the kids, do a load of laundry, mow the grass, send a gift certificate for takeout, offer the kids a ride to school or church, pick up something from the grocery store, deliver a special treat (caffeine for a tired mama!), collect money for hospital expenses… anything.  Don’t wait for an invitation.  If you have a gift, use it.  If you think of something, do it.  I can promise you nothing goes unappreciated.

As I said, this is a reminder to myself… I have had ample opportunity to see God use people in many ways right here in my life, and I’ve learned that I have failed in many ways to serve others.  I want the experiences I’ve had to teach me to be more like Jesus, and He’s given me lots of examples to show me how to love others by the love we’ve been shown.  Now it’s your turn… share some ideas you have on how to serve families in times of chaos!

Happy Saturday!  I don’t know that I’ve ever been so excited to see the weekend… This week has been all levels of crazy for our family.  Our big girls started a new school on Monday, which was a huge answer to prayer, but has taken some getting used to, especially for my middle babe who has always been homeschooled!

We had Harper’s appointments at Duke scheduled for Thursday and Friday, but on Wednesday I ended up in the ER with heart palpitations and blood pressure issues- about a year ago I started having problems with my thyroid, and apparently it made a sudden flip and threw everything out of whack.  After a few hours of monitoring and loads of meds, they let me go home to rest and advised me not to travel for Harper’s appointments.

Fortunately my doctor knew how important these appointments were for Harper, so she gave me the okay to travel as long as I promised not to drive and to keep a close eye on my heart.  Thankfully I have a great family and they jumped right in to make all of that happen.

Our first stop was Harper’s MRI- this was our first MRI without radiation or sedation, and she was not happy about it.  I had to lay on top of her and go in the machine with her, holding her head still so they could get a clear picture.  She was terrified and it broke my heart to hear her telling me she was scared and begging me to make them stop, but it was over in less than five minutes and it was a relief to not have to pump her body full of harmful stuff!  

We met with Dr. Fuchs (her neurosurgeon) after that to go over the results.  He showed us this scan in comparison with last year’s scan… Harper has a porencephalic cyst, hydrocephalus, and periventricular leukomalacia.  The cyst has not grown or changed since her surgeries at birth.  The hydrocephalus is under control- there is no fluid building up, and her right ventricle actually seems to have slightly decreased in size.  It’s a very, very small change, but a change for the better!  

The main thing Dr. Fuchs is monitoring is the periventricular leukomalacia- this is the dead brain tissue Harper has.  When you look at the scan of Harper’s brain, there is a huge gray blob on the left side, taking up about 3/4 of that half of her brain.  That is dead tissue, which the doctor explained is basically like having a hole in the brain.  When Harper had her first brain surgery, she suffered extensive brain hemorrhaging that spread over that area of the brain and killed it.  Fortunately, she was so young that her brain rewired itself and she’s able to function very well in spite of that.  This week’s scans indicate that there is no new or active bleeding anywhere, and if you look closely, it even appears that she has some new brain tissue growth outside of that area, which will be great if it continues!

We met our new neurologist on Friday, and made some headway with figuring out these seizures.  Harper currently takes two medications twice daily, and has two additional medications to use as needed.  They are increasing her dosage on one of the daily meds, and also increased the dosage on her emergency med as she has outgrown the previous amount.  

The other daily medication is causing some side effects so they decided against increasing it at this time.  It prevents Harper from sweating, which is a major issue in this area in the summer.  We don’t go outside much at all because she so quickly overheats.  She has also had some spells of feeling like bugs are crawling on her and seeing “sparkles” in her eyes, which they believe are also side effects of the Topomax.  The goal is to get the seizures under control and then possibly wean off of that med.  

I had some questions about Harper’s development- she has had to resume OT and PT, and potty training is not working (she’s willing and has a good attitude about it, but it just isn’t clicking).  The neurologist decided that we need to come back up and see a developmental specialist to get a good overall look at where she is developmentally and make a plan.  

The last referral made was for a sleep study, which we have to travel up for Wednesday.  Most of Harper’s major seizures occur while she is sleeping, and the neuro said her tonsils are huge.  Her sleep study last year showed mild sleep apnea, and the concern is that it has gotten worse.  She said if that’s the case, that could be triggering these nighttime seizures.  So we will have another sleep study done this week, and possibly be referred to the ENT again to see about a tonsillectomy.

So, lots of things being looked at, and hopefully we will get some answers.  In the meantime, she gave me a card with their on-call numbers so that if Harper has any breakthrough seizures I can call immediately and they can adjust medications. They also want me to call if Harper has to go the ER so that they can call the ER and give instructions on how they want her treated.  

As always, thank you all for praying over these appointments for us- your prayers are felt and have been answered.  Good reports and good progress this week, so keep praying for Harper’s next steps and the sleep study this week!  I don’t particularly want her to need surgery for anything, even just tonsils, but if that would help her seizure activity and sleep, it would be worth it.  We are grateful for all of your prayer warriors out there ❤️

I’m not much for words tonight so please excuse the messiness of my writing, but I wanted to do a quick post for all of you who have been praying for Harper’s appointments this week- we aren’t going.

Long story short, I ended up in the emergency room myself this afternoon and I have been told by the doctors that I cannot travel much farther than my living room.  As of right now we are rescheduling Harper’s MRI and neurosurgery appointment as that was just her routine, annual checkup.  I am supposed to meet with my doctor tomorrow and I plan to beg her to let me travel Friday so that we can make the neurology appointment- that’s the important one to discuss meds and seizures and all of that.  

So, our prayer requests have changed slightly- please pray that I can get my crazy health issues under control so I can focus on Harper’s needs, that we will be able to make that appointment Friday, and that we won’t have too much trouble rescheduling the MRI.  Thanks friends ❤️

Well, my friends, it has been quite a week here.  The kind of week that makes your head spin and your bones ache… Where you’re weary down to your soul.  I am weary. 

Harper started regular occupational therapy in addition to her physical therapy this week.  She was a bear for her PT session on Tuesday, frustrated and grumpy and uncooperative.  She showed off her massive fit-throwing skills, a trend that has continued multiple times a day every day this week.  

OT was a little better on Wednesday.  She was more willing to do what she was told, and I got all the paperwork on her evaluation.  It was a lot of information, but she seems to have a sensory processing disorder- she showed weaknesses in multiple sensory areas, as well as decreased core strength.  While the results weren’t really a surprise, it still took me a moment to process it all.  It never really gets easier to officially hear that something is “wrong” with your child.  But that’s what we’re there for- to get the help we need to help her overcome these obstacles.  We started implementing the first part of her “sensory diet” with a special brushing technique about six times a day (known as the Wilbarger Protocol).  

Toward the end of the week I noticed that Harper seemed to be more agitated than usual- we had more fits, more aggression, more screaming.  She became obstinately defiant, full of energy and getting into trouble left and right.  Now, she’s normally pretty headstrong and can be feisty, but she was taking it to whole new levels.  We cried together on more than one occasion!  She also had no appetite and was not sleeping- no naps, major battles at bedtime, and restless nights when she was asleep.

Then around 3:00 this morning, I woke up suddenly- Harper was telling me something in my dream and it jolted me awake.  She was right in the bed next to me, so I rolled over to check on her- and realized she was seizing.  It was very quiet- her eyes were shifted right and she was clicking her tongue.  I started timing her, and by the time we hit the 5-minute mark she was starting to twitch down the right side of her body.  However, when I went to administer her Diastat, she grabbed my hand, so I waited another minute or so to see if she was starting to respond to me, but instead she began fully seizing.  

The seizing did not stop with the Diastat this time, so I had to dial 911 and call on our family to come sit with the big girls. We took an ambulance ride to the ER, and on the way Harper was given a dose of Versed, which did the job.  By the time we arrived at the hospital she was sound asleep and the seizing was finally over (about 30 minutes long).  She was monitored for a few hours, and started vomiting as she woke up, so she was given a dose of Zofran, and then we came back home to sleep it off.  

We had an incredible experience this go round… The paramedic that arrived was one who has been here before, and he was so attentive to Harper’s condition.  He recognized that she was seizing even when it didn’t look like a typical seizure- his response kept Harper from having to do IVs and even heavier meds later on.  The ER staff was also great- they were quick to get her set up and actually listened to me.  The doctor even asked if I was comfortable taking her home, and said he recognized that I know more about her condition than they do- a huge difference from our last experience there three months ago.

We are now back home, taking it easy and planning to spend the day being lazy in our house.  I’m running on about two hours of sleep, but seeing the energy Harper has after all her body went through this morning pushes me to keep moving.  

We will touch base with the pediatrician Monday and then make our big Duke trip at the end of the week.  Prayers are appreciated for that- Harper will have an updated MRI, and we of course are expecting everything to be stable.  I also have lots of questions and concerns- we’re seeing another increase in seizures in spite of all the medication she’s on, and after being all caught up developmentally, we’re seeing some mild weaknesses and delays again.  We will meet with her neurosurgeon, and we’ll also be meeting a new neurologist.  Please pray with us that her scans will be good, that I will be able to articulate our concerns, and that they will listen and give us the help we need to keep moving Harper forward.  

This worn-out mama is signing off now… Thank you prayer warriors for always being willing to go to the Lord on behalf of our girl!  ❤️

Have you ever felt that you were caught in a vicious cycle that just continues to spin around on repeat?  That’s been me for the past three years. Sometimes it seems we are in this constant motion of three steps forward, two steps back.

Harper has done well this past month and a half.  She took to physical therapy well, started taking her meds like a champ (as in my three year old is eager to swallow four whole pills a day- woohoo!), and no seizure activity.  We were on a steady upward trend.

BUT, just over a week ago, those stinking seizures snuck back up on us.  Harper collapsed walking out of a restaurant one afternoon as the muscles in her right leg failed her, and when I picked her up, I realized she was unable to focus her eyes or respond to my questions.  Over the next couple of days she experienced two more focal seizures that I noticed, and then on Sunday night she had a major seizure while sleeping.  Her entire body was affected, and I had to administer her emergency medication.  Thankfully it did the job and the seizure subsided after seven minutes. 

We were out of town at the time, so we made our way back home and Harper had a couple more focal seizures.  She had a more challenging time in therapy this week as one side of her body seemed significantly weaker, and there was some talk about muscle memory and the concern that Harper may be struggling a bit in that area.  

Then, to top it all off, we ended up at the doctor today because she has developed cellulitis (infection) in her legs again, this time from mosquito bites.  So we are retreating back into our bubble for a bit once again, steering clear of germs while she runs this round of antibiotics, staying out of the heat and away from outside bugs, and trying to settle back in to some good routines and schedules… Basically anything we can do to alleviate risks of illness or seizures and boost her strength and immune system.

It can be difficult to not get discouraged.  We had such a good stretch of good health and no seizures, then within one week she gets hit with so many obstacles.  I’ve cried many tears and felt so much frustration because it just doesn’t seem fair.

But God is faithful.  As I’ve grown weary and honestly struggled to find words to pray, He’s held me and gently reminded me of His goodness.  We have come so far.  He has filled us with strength when we were ready to collapse.  She has overcome so very much, flown over hurdle after hurdle with grace and power.  These things are so small in comparison to where she started, and even smaller in light of eternity.  She wakes up each morning with a smile, ready to take on the day, and endures trials with a joy that cannot be explained apart from Jesus.  

So, yet again, I have been reminded to count the gifts, to be thankful for all of the seemingly small things that are pointing to an extraordinary God.  He’s with us every moment of the journey, and His promises are true.