This week’s news…

Well, this week started with not-good news, and now it’s ending with not-good news. But let me just say this- I’ve heard the true Good News, and I know how this story ends, and one week of not-good news isn’t going to change that!

Now that I’ve made that clear, I’ll share the report we got in Baltimore this week on Harps. From a cognitive standpoint, she seems to have remained relatively stable in many areas over the last couple of months, but the final scores are not in. However, it is clear that her memory is being greatly impacted and there is increasing concern regarding her language processing and comprehension, so there will be more in-depth testing in the upcoming weeks.

The EEG results were upsetting. The ESES is still at 100%, indicating that the treatments have not yet been effective. She did say that sometimes it can take more time to kick in so not to give up yet, so we will keep pressing forward. However, the EEG showed new seizure activity that they’ve never seen in Harper before- new types of seizures in different parts of the brain. This has caught everyone off-guard and they aren’t sure why it’s happening, but it does confirm some of the activity I thought I was seeing and wasn’t sure about.

Our neuro in Baltimore is now reaching out to Duke to see about changing some things- a possible new medication for these new seizures (with some new, unpleasant side effects) and seeing if they can arrange another EEG when we are there for Harper’s next round of treatments in December. We’ll also get the more in-depth neuropsych testing done in the next couple of weeks to see what needs to be done to help Harper with her memory and language processing.

Right now I feel a bit numb and we are just in the throes of “go-mode.” Eventually things will slow down and I’ll process it a bit more and I’m sure I’ll be angry and frustrated and sad… but through it all there is peace in knowing that while we may be caught off-guard and the doctors may be caught off-guard, my God is never caught off-guard. He’s always known and He’s working all things for the good of those who love Him 💜

Praying for this week…

Hey friends… I’m doing something a little different this week after talking with one of our prayer warriors yesterday, and I’m listing out some specific prayer requests as we go into this upcoming week.

We are on the road right now for Duke so that Harper can get her steroid infusions to fight this ESES, which we will now be doing for three straight days every four weeks. That decision was just made at the end of the week after the doctor realized the first round of treatment did not prove to be effective, so we are going for a more aggressive treatment- assuming they can get everything in order to make that happen in the next 24 hours!

So, please excuse this lengthy list, but that’s just where we are right now. This disorder is complicated and it’s impact is not small, so I am learning to be more detailed and specific in my prayers as we navigate through 💜

1. PEACE… Peace that surpasses all understanding. Peace that comes only through Christ. Peace for Harper as she endures so many unpleasantries and asks so many questions. Peace for Maddie and Raegan as they watch their sister go through this and as they keep saying goodbye to us so we can make these medical trips (emotions are running high these days). Peace for Mom and Dad as we help each of our girls and each other through this, as we face so many unknowns, as we work through all the financial and scheduling details, and as we continue to trust God no matter what.

2. Ease of scheduling, especially in these next couple of months as we are working between Duke and Johns Hopkins and the traveling and trying to work in three days of infusions in a row instead of just the one that was scheduled.

3. Financial provision… God has richly blessed us every step of the way and we know He will not fail. We are so grateful for incredible insurance, but copays and travel expenses add up quick!

4. Easy IV access tomorrow! Harper had a very difficult time with the IV last month, and it took four tries to get a line in, even with ultrasound technology. We need tomorrow to be less traumatic for her!

5. Minimal side effects from the steroids.

6. The treatments to work. By work, we mean the SWI percentages to decrease. She is at 100%. We want her down to 20% or less. We want NO seizures and NO seizure-like activity.

7. No more regression. “Make her brain come alive!” May she stop losing skills, stop forgetting things, and fully remember again. We want to see God fully restore all the connections that have been broken in her mind. We want to see her understanding concepts, able to pay attention and focus, putting her thoughts and feelings into words and sentences in the appropriate context. We want to see full cognitive development again. We want the doctors to look at her and say, “This makes no sense- we cannot explain it- but Harper is healed and restored.” We want God to do what only He can do in a way that brings all glory and honor to Him.

I think that’s enough for one night… If you’ve made it through all that- thank you! We are grateful for our army of prayer warriors, and we are eager for the day when we can look back at this moment and say, “See what God did!” 💜

Picture courtesy of Chloe John Photography

Even if…

Hey friends.

It has been a week since I have posted any kind of updates anywhere regarding Harper. I’ve started this post three different times, but haven’t been able to bring myself to share it because it involves deeply personal feelings and emotions and struggles, and somewhere along the way it began to feel shameful to admit I had those feelings and emotions and struggles.

But a precious friend gifted me a much-needed book to read for my birthday, and in the first chapter the author (Lysa Terkeurst) talks about how Christians feel they cannot talk about or process through their disappointments. Then she makes this statement: “If the enemy can isolate us, he can influence us.”

Ouch.

I spent the last week isolated, and maybe someone reading this is in the same boat. Friend, don’t let the enemy isolate you- don’t hide your feelings. Own them and speak Truth to them. The very God that created this entire universe created you and all of your feelings, and He is more than able to handle your emotions. Know that you aren’t alone!

As for me? Well, not heeding my own advice, I wallowed, I wept, I wondered, I whined… I was sad, I was mad, I was guilty, I was burdened, I was overwhelmed, I was devastated, I was confused, I was hurt. It was a week of wrestling and crying and processing, but eventually also reminding myself of Truth and making choices… choices for Harper, choices for our family, and choices for myself… choosing to believe, choosing to praise, choosing to trust, choosing to persist, choosing to seek Him, choosing to find the gifts.

So, the news came back last weekend that the ESES has definitely returned. Technically a child is not officially diagnosed with ESES until their SWI is 85% or higher, but when we were first introduced to this disorder Harper’s was in the 50-60% range and then progressed. However, she had beat it and was down to less that 25%, clearing her from the diagnosis.

She is now at 100%.

This basically means her brain is misfiring all the time, and her seizure activity is intensified tremendously when she’s asleep. She is currently losing skills by the day at a rapid pace, and it has been shocking to witness. Her learning has nosedived, her behavior and emotions are a battle, and she is falling more and more as her muscles are being impacted again.

I won’t lie- I was in a very low place when all the results came in. It felt as if the healing we had witnessed had been taken back in some way, that the miracle had been revoked- even though I know that my God does not break His promises. My feelings have been hurt and I did not and still do not understand. At any moment I can look at her and see what she’s losing and the impacts this is having on our family and be mad or sad or frustrated.

OR… I can choose to see the good. And God has reminded me that He is good. He has reminded me that He is faithful. He has shown me that He has never failed, that He has never lost a battle, that He hasn’t stopped keeping His promises. He has surrounded us with a village that supports and encourages us just as much now as they did seven years ago when this crazy journey first began. He has placed women in my life that speak Truth over me when I am struggling to see it, who allow me to be real but refuse to let me drown. He has given us the strongest army of prayer warriors, an army that continues to grow and that stands in the gaps and calls out on our behalf when we have no words. He has led us to the best doctors for Harper’s care, and even orchestrated two hospitals in two states working together to meet her needs. And He has filled our girl with His Spirit in ways I never could have imagined.

BUT even if… He has reminded me that even if all of those things were stripped away… even if nothing worked out the way I think it should… even if we face more disappointment… even if I found myself with absolutely nothing and no one at the end of the day… He would still be good. Because at the end of the day, at the end of this season, at the end of this journey, what matters is not what He can do or has done for me, but Who He is.

So we keep pushing forward, choosing to praise, choosing to worship, even if, simply because HE IS GOOD. Just as Shadrach, Meshach, and Abednego said to King Nebuchadnezzar in Daniel 3, we know our God is able to deliver us from it, but even if He does not, He is still good.

Update…

It is Tuesday, and I’m fresh out of eloquent words or inspiration today. So this is just an update.

Harper made it through her MRI at Duke yesterday with minimal tears. She was incredibly brave, hopped right up on the table, followed directions, and stayed still even with tears streaming down her face.

Her neurosurgeon was very thorough in going through the scan and comparing it to previous scans to make sure that there was no kind of change anywhere that could be contributing to the seizure issues we’ve been experiencing lately- and everything is stable.

Because of how rough the last few nights had been, our neurologist at Johns Hopkins sent us from that appointment to the emergency department for a neurological evaluation- and from there Harper was admitted to the hospital for EEG monitoring.

It was a rough night. It took four attempts and six different people to get an IV started. The process of getting hooked up for the EEG took about an hour and a half. Alarms went off multiple times through the night as Harper’s heart rate would increase too high or her respiratory rate would drop too low. She vomited all over the bedding and her clothes around midnight requiring a full cleanup and change of everything. Mom and Dad alternated chairs to sleep in, sporting the same dirty clothes for way too long.

The EEG from last night confirmed what we suspected- the ESES has returned. We had to make some tough decisions today regarding treatment. Basically, we are down to the last resort. Harper is on one line of medicine at a high dose, so there is no point in adding the only other medicine in that class that treats ESES. It would be ineffective. The other medication that is best is the one that her liver can not tolerate, so we have ruled that out.

That leaves us with the least desirable treatment option that everyone has avoided- intense steroid treatments. The side effects can be pretty rough, particularly for a little person, but the doctors at Duke recommend using monthly IV infusions to help combat this rather than daily oral steroids.

The big decision came when we had to choose between Johns Hopkins and Duke. Obviously, making monthly trips to Baltimore for infusions would be problematic. Upon consulting with our doctor at Johns Hopkins, she recommended making the switch to Duke because of the law differences between states and it being difficult to secure IV infusions in Maryland for Harper, and felt the IV infusions would be better in the long run.

So we are now in the process of transferring neurological care back to Duke, securing an epileptologist here, and we are still in the hospital as she is being monitored and starting her first round of infusions.

By way of specific prayer requests this evening, here are some:

We find the right doctor here at Duke for long term care.

We have a smoother night tonight.

These steroid infusions work with MINIMAL side effects.

I can’t close without sharing something positive through all of this- every time Harper complains, I make her tell me something good that has happened, so it’s only fair for me to do the same!Here is today’s good news. First, last night as Harper was struggling and afraid while the nurse was drawing blood through her IV line, she began whispering to herself and pointing to her chest and the sky. I asked her what she was saying and she said, “God is with me.” The nurse stopped and rubbed her arm and said, “Yes, baby girl, He is and He always will be. Don’t forget that.” It was a precious moment between two sisters in Christ, and it made me so proud of my girl, because she never fails to tell anyone and everyone Who is in charge!

And the second positive… we had a doctor come in this morning and talk with us. She popped in a few minutes later and told us that she had been trying to place us and went back through our chart because she knew she remembered us- and she had been a resident on Harper’s case seven years ago when Harper was in the ICN here. She said we had made an impression on her back then and was amazed to see Harper all grown up today. 💜

The name of Jesus…

Hey friends.

It’s been a while. I would like to say that’s because everything has been just wonderful and beautiful, and for a period of time, it was. But lately it has not been so lovely, and I have been in strong denial of that and have not had the words to express what we’ve been dealing with.

Somehow putting it in words makes it more real and makes it more difficult to deny. I like to focus on the positive and speak life and believe for the best.

But, here’s our reality right now…

Last night we didn’t sleep. Harper was restless as she has been almost every night for the past month. She tosses and turns and thrashes and moans and groans and cries in her sleep, calls out for us in her sleep, makes odd noises, and wakes multiple times a night. That’s all a sign of the ESES returning. Last night was worse as she was waking to vomit, not because she was sick, but as a side effect of the seizure activity. It was a long night of heaving and muscle twitching and crying.

Her days are filled with more and more confusion. It can be small things, like at dinner last night when she was confused over a dinner roll on her plate and told me she didn’t know what to do with it. “Is this for eating? Does it go in my mouth? Do I use a spoon or a fork?” It can be bigger things, like forgetting to go to the bathroom or forgetting where the bathroom is. She’s repeating things over and over again, more so than usual. She forgets what we are doing or what day or time of day it is. At school she isn’t able to stay in her seat or complete her assignments, and she has forgotten skills that she knew just a month ago. She cannot be left alone for any period of time right now, so one of us is constantly shadowing her to keep her on track. Her tiptoe walking has gotten worse, her leg and foot muscles are steadily tightening, and her right ankle is now rolling under when she walks, all of which makes her fall more and more and tires her out more quickly.

ESES is a thief. It sneaks in and steals her progress and development so fast. It picks and chooses which parts of the brain it wants to attack and leaves other parts alone, and we’re left standing in the rubble wondering how it happens so fast. It is absolutely heartbreaking, and my baby doesn’t understand a bit of it. As I sat in the bathroom floor holding her in the wee hours of the morning this morning, she looked up at me with those big, brown eyes full of confusion as tremors shook her body, and it was all I could do to keep from sobbing. Because as much as I don’t understand, she really doesn’t understand.

It is in those moments that I struggle with the words to say or the words to pray. I try so hard to be strong for my girls and to teach them to be bold and courageous, but sometimes it is hard to model that. As I rocked Harper in my arms in that bathroom floor this morning, I just whispered the only thing I could over her again and again… “Jesus.”

Friends, sometimes we just need to speak the name of Jesus over our situation. In His name is all power and authority, healing, peace, promise, strength, comfort, light, life… through Him broken things are made whole, old things are made new, the rotten is redeemed, and miracles are manifested. His name is the name above all names- and I can think of nothing better to whisper in the darkest of nights.

For those of you who pray for our family, Harps has an MRI at Duke tomorrow to measure the cysts and fluid on her brain, and we are waiting for a word back from her doctor at Johns Hopkins about what steps to take next for the increased seizures and regression. 💜

Road-trippin’ to Duke

Praise!!

Y’all, there are moments in which I am so unbelievably awestruck by the goodness and faithfulness of God that I don’t even know what to say.

Tonight has been one of those moments.

I came home from work this evening and jumped on the computer for a video conference with Harper’s neuropsychologist from Kennedy Kreiger in Baltimore. We saw her on this most recent trip for the annual evaluation, and I have been not-so-patiently awaiting the results!

Last year when Harper had this testing done, we came away feeling defeated. The recommendations made for her were not ones that I wanted to hear and included advising us to medicate her for ADHD and put her in public school for a special education program. We were told she would need intensive services and that she had a severe math learning disability and vision issues among many other things.

We covered the situation in prayer and felt the Lord leading us to stay the course. We kept her at Southeastern Christian Academy, worked with her amazing teachers to make the accommodations we could, got her extra therapy help, and I worked with her at home as much as I could. We had everyone continue to pray for her, and her neurologist continued to seek the best treatment options for her epilepsy and ESES.

This evening the doctor could not stop smiling as she reported TREMENDOUS growth in Harper’s cognitive development. She showed improvement in every single area. Her IQ went up 14 points. Her processing speed increased. That math learning disability concern is gone. There are no recommendations for ADHD medications, no push for a different school or program. In areas where she was totally bottomed out last year she is now on the learning curve. She is actually remembering information and instructions and engaging in conversations!

There are still concerns and deficits. She still has a lot of cognitive growing to do and areas of learning that will be more difficult. We talked a lot about social skills- as Harper gets older, appropriate social interaction becomes more troublesome. The doctor explained this as a neurological issue, stating that Harper is not simply dealing with external distraction, but has a lot of internal distraction that makes her unaware of what is happening around her socially. Our goal is to focus more on social skills this next year, and to continue working on some motor skill issues as we have been. We certainly still have lots of work to do and accommodations to make… but the doctor said that she has never seen a child with Harper’s complexities make such strides so quickly, so to keep up whatever it is we’re doing.

May I just say this- it is not what we’re doing. It’s what HE is doing! He is good. He is faithful. He always keeps His promises. His plans, His timing, His way!

He performs wonders that cannot be fathomed, miracles that cannot be counted. (Job 5:9)

Soaring…

I’m writing tonight from our hotel in Baltimore, which has become oddly comfortable at this point. It has become our home away from home this past year, the perfect location between the airport and the big city, and since I’m not much of a big city girl, I’ve learned that once I find a comfortable spot, I better stick with it!

It has been a strange trip this go round with the whole Covid situation. Flying was different (and this mama ended up airsick!), going out in public has been different, visiting doctors has been different… we were so blessed that Kirby could actually travel with us this time, but then he wasn’t allowed in any of the appointments with us! The doctors were all behind shields and masks, and the visits and testing were cut short to minimize exposure.

Harper had her neuropsych testing at Kennedy Kreiger yesterday, a process that usually takes 4-6 hours, but they scaled it down to just two hours. This testing looks at how her brain is functioning, how she is processing things, how she is learning, her IQ, etc. Last year she had a full evaluation and the feedback was not very positive at all. Because of Covid I did not get to meet with the doctor to get feedback, but we are supposed to have a zoom conference in the next couple weeks to go over her findings.

However, when we met with our neurologist today, she did give us some news from that testing- the initial impressions are that Harper has made tremendous gains since January! She said they saw improvements in her processing speed, her overall IQ score, her reading, her math… basically, they were wowed by what her brain is doing and the strides she has made in the last six months.

A lot of things changed for Harper in the last six months to affect this. She did the medicine to treat the ESES that worked well- which is the one we just recently had to quit. Because of health issues we had to pull her from the classroom and start homeschooling (before Covid), which means she’s had one-on-one instruction for the last six months. And she has had more therapy in the last few months, currently four different sessions a week. She has also continued to have all of her prayer warriors covering her in prayer!

We have some next steps. Harper is now down to just ONE medication twice a day- that is HUGE for us!! Just weeks ago I had a board posted in my kitchen that was full of all the different medicines and doses and times that we had to go through daily- and now it’s just one! That is amazing to me. They want an updated MRI to measure her brain cyst and the fluid on her brain, which will need to be done through her neurosurgeon at Duke in the next couple of months. Then in the next 3-4 months we have to come back to Baltimore for an overnight EEG and follow up with our neurologist. It is too soon to tell if the ESES is coming back now that she’s off the treatment, and the only way we’ll know for sure is through the EEG.

For now, we are just going to soar on this positive feedback. It has been so long since we have gotten so much positive, so we will just soak it in and thank God for it! One medicine and so far good impressions on the neuropsych testing, so let’s fly high on that this week!

But they who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint. (Isaiah 40:31)

Thanks for your prayers, friends 💜

The elephant in the room…

There are moments in life you realize you are avoiding the elephant in the room.

You know those moments… you try to avoid a subject that will make someone sad or upset or angry. You overlook the obvious to avoid embarrassment. You don’t ask that question that you don’t really want the answer to.

Today I tried hard to avoid the elephant in the room. Harper had a busy day, spending her morning at the hospital for labs and tests and x-rays and her afternoon in therapy appointments, and by the time we got out, we had results to deal with.

Despite decreasing the seizure medication that has been treating her ESES these last six months, the lab results today showed an increase in her ammonia levels. That was NOT the news we were hoping for.

As soon as our neurologist in Baltimore saw the results, she called me to discuss what needs to be done and what that means. We immediately started a prescription to try to rid her body of the excess ammonia, and we will work to wean her completely off of that particular seizure medicine over the next week.

I was on the phone with someone this afternoon, sharing this information, and they asked me, “So what’s next? What’s the plan?” They addressed the elephant in the room that I had been avoiding, because the answer is one I didn’t want to face- nothing. There is no plan.

What does that mean? It means more bloodwork as we try to get her body where it needs to be to avoid damage to her organs. It means Harper is no longer a candidate for this treatment for her ESES, and we have another failed seizure medication. It means we have no plan as of now other than to watch and see if she goes back to having life-threatening seizures or if she continues to regress developmentally from the ESES. It means no one really knows what to do now.

It means more sleepless nights for this mama. It means putting on a brave face and weeping when I’m alone. It means my heart aches and my brain does not understand. It means choosing to believe even when I cannot see.

But it does not mean we give up. It doesn’t mean that the miracle isn’t coming. It does not mean that I do not trust my God. It does not mean that He is not working and that He is not good. It does not mean that our story is over or that we are defeated.

Friends, we need your prayers over the next few weeks. We need those ammonia levels to go down. We need the seizures to stay away when the meds stop. We need her brain to grow and develop and not regress. We need her to stay healthy and well through all of these medical appointments and the upcoming traveling. We need to trust in God’s perfect timing. We love and appreciate you all 💜

Continuing steadfastly

Oh, life with a medically complex child… it is never dull, that’s for sure.

The last few weeks have been slightly tumultuous. No one big, catastrophic thing, but just little things that make a mama tired. We increased one seizure medicine for the ESES, then decreased another one to try to combat fatigue, but then she started having breakthrough focal seizures again.

Harper had her appointment with an allergist finally, and it was determined that she is allergic to cats, dogs, grass, and mold, and he was very concerned about her two bouts of pneumonia already this year. There was no real explanation of what happened with her inability-to-breathe spells a while back, so for now we continue to carry an epi-pen and rescue inhaler. If she develops pneumonia again this year, he will want more in-depth testing.

We had been doing Telehealth physical therapy during the Covid-lockdown, but she began complaining of pain in her feet and ankles and having more and more falls, so the therapist had to start making home visits and add more exercises to our routine. She also picked up on some issues with some reflexes and crossing midline and perception/body awareness, which are some of those brain issues that are affecting her muscle coordination, so new challenges and things to try there as well.

Harps also resumed her OT services with her favorite therapist this last month, and through that she was referred over for a speech therapy evaluation which indicated a need for some auditory processing therapy as well. It has been amazing to see all the pieces coming together. Granted, it’s exhausting as that has us at four therapy appointments a week right now in addition to any doctors (and three of those are in Wilmington), but to see how they all fit together and how Harper can get help for some of these things that I thought we just had to deal with is incredible. Therapists are pretty fabulous people!

Today was one of those days that reminds me of the fragility of Harper’s condition. We tackle all of these things and do what needs to be done, but every so often we have a scare that jolts us… and this morning was one of those moments.

Lately Harper has had to have a lot of blood work done. With the medications being altered so frequently and her constant fatigue and illnesses all the time, they’re always needing to check something. So last week she had some follow up testing for thyroid function because her thyroid levels had been fluctuating, and her neurologist requested a couple of additional tests while they were drawing blood.

Well, I woke up to a message from the doctor first thing this morning that one of those levels was dangerously elevated and we were waiting on neuro to tell us what to do. Now, I know full well not to Google these things by now- but as I waited with no clue as to what any of this meant, I started searching, and went into full panic mode at the results. Liver failure, kidney failure, brain damage, lung damage, coma, death… y’all, it was not good, and I was a hot mess.

We ended up spending our day messaging doctors and making phone calls and going to the hospital for more testing- and praying, a lot! My girl was amazing through it all- so brave and strong, and even used her words to talk to the phlebotomist about the needles and blood and took it like a champ.

By the end of the day we received better news… the numbers were down from last week’s test. She is still elevated, but not at an emergency level as they thought. For now we are able to make some medicine adjustments and keep monitoring, with more testing in two weeks.

So, for those of you who pray with us through this journey, I haven’t shared a specific list in while, but I will tonight:

  • No more pneumonia this year
  • No increase in seizures as we adjust meds
  • Improvement in ESES even though we have to decrease the medicine for it
  • Improved cognitive function on her neuropsych testing in a few weeks
  • Decrease in ammonia levels in her bloodstream over the next two weeks
  • Decrease in fatigue and increase in energy

I was reading Romans 12 today, and while there is so much there to soak in, I’ll leave you with this tonight from verse 12… “rejoicing in hope, patient in tribulation, continuing steadfastly in prayer.” We do not rejoice because of our circumstances- we rejoice because of our hope, and our hope is a Person, Jesus Christ. Because of that, we can be patient in our trials (and maybe when we’re patient we should lay off the Google searches!).

But it’s that last part that God laid on my heart this evening… we always say to keep moving, to keep going forward, to continue on. But there’s a way to do that- we continue steadfastly. Steadfast means resolutely or dutifully firm and unwavering. We don’t push on with our doubts in tow- we push on without wavering from Truth. We hold on to what we know no matter what. And that verse says that we continue steadfastly in prayer. Prayer is communication with the One who sustains us- whatever we’re walking through, we are not alone.

Here’s to continuing steadfastly, my friends… praying for you and with you, and asking you to do the same 💜

Updates from quarantine

I have been struggling with the updates on here.  It isn’t that things aren’t happening- they are.  But after walking this path with Harper for over seven years now, I have reached a point where my updates seem to be saying the same thing over and over again.  This ride we are on is not so much a roller coaster of ups and downs, but a carousel of the same ups and downs going around and around over and over again.
Harper’s allergy situation has improved.  She has not experienced any more of the rashes or hives or throat closing off, and we are still awaiting an appointment with a specialist for pulmonary and allergy testing.  She has had pneumonia twice in the last few months, once in each lung now, so we are also keeping a close eye on that.  Her physical therapy has continued all this time via Telehealth visits at home, and we will be resuming occupational therapy next week.  She has a regular checkup next week as well and some lab work to be done, and then if traveling is possible we will be heading back to Baltimore at the end of July for neurological and neuropsych visits and testing.
The neurological aspect of everything has been challenging throughout this Covid-19 pandemic as Harper’s neurologist is at Johns Hopkins.  Her last EEG was in March right before everything got crazy.  That EEG showed some improvement on the Depakote treatment for the ESES she was officially diagnosed with in January, which was good news. 
Unfortunately, since March, we have already had to increase that medication twice.  Her seizures have been relentless.  Granted, they haven’t been severe, and we thank God for that.  But they just won’t completely stop.  Her sleep has been very restless again, and we’ve even seen seizure activity while she’s been awake, which is very unusual.
This is that repetitive update I mentioned before… Harper has been in this cycle with medicines since she started having seizures in 2015.  They work great at first, and then they become less and less effective as her body adapts.  That is why we have gone through so many anti-seizure medications already, and why she ends up taking the insane amount of medicine that she takes.  I snapped this picture this morning as we opened the latest bag from the pharmacy…

This is just ONE of the medicines that she takes every day, and this is a month’s supply.  That is FIVE large bottles per month going into her body of just one particular drug- she has two other daily liquid prescriptions (and by daily, I mean multiple times a day) as well as a wide range of supplements to combat the side effects and a special bag full of emergency medications we keep with us at all times just in case. 

Please do not misunderstand me- I am GRATEFUL.  Right now these medicines are keeping her alive.  I am thankful for a doctor who has found the right combination to slow down the regression in her brain function.  I am blessed that we have good health insurance to help cover the astronomical costs of these medications.  I am glad we live in a time where research is being done and new developments are being made and my baby can be treated.  And I will forever praise God for the miracles He has worked in her and the direction He has led us thus far and the joy that she brings to us.

But sometimes it is scary.  We know that we are running out of medication options.  We know how close we are to being maxed out on this treatment already, and we just started it in January.  And we know that at this point in time there are no other options aside from medicine for her condition, as was discussed with us last year.

We also are living with the reality of what all of this is doing to our girl.  She is exhausted all the time… but sleep is a joke.  She doesn’t nap at all, and she can only fall asleep at night with melatonin and then wakes multiple times a night only to be up with the sunrise in the morning.  Between feeling hungry all the time from the medicine and being wiped out all the time, she’s gaining weight.  Her memory is still struggling, but she’s becoming more aware of it, which is so hard to watch and explain.  Her behavior has been really rough the last month or two- anger, violent outbursts, high emotions, and she requires CONSTANT attention during the day.  Between the seizures and the brain issues and the loads of medications, it is next to impossible to determine what is causing what with her, so we just keep adapting and adjusting and trying new things… and fortunately the whole quarantine-situation has made it a bit easier to just stay home and deal with it ourselves for a while!

I cannot explain the “why”s or the “how”s or the “what will be”s… Honestly, I cannot even think about them, because if I let my mind sit there, I’ll drown.  And I’m not ready to drown today!  Instead, my mind has been camped out on the truths of God’s Word this week, and He has laid one passage in particular on my heart that keeps repeating through my mind… Psalm 23. 

He leads.

He restores.

For his name’s sake.

I will fear no evil for HE IS WITH ME!

He comforts, He prepares, He annoints…

He is GOOD.

Psalm 23…
The Lord is my shepherd; I shall not want.
He makes me lie down in green pastures.
He leads me beside still waters.
He restores my soul.
He leads me in paths of righteousness for his name’s sake.
Even though I walk through the valley of the shadow of death,
I will fear no evil,
For you are with me;
Your rod and your staff,
They comfort me.
You prepare a table before me in the presence of my enemies;
You anoint my head with oil;
My cup overflows.
Surely goodness and mercy shall follow me all the days of my life,
And I shall dwell in the house of the Lord forever.