Tag: harper

She fights (we wait)

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First, let me start by saying that I write these detailed posts as a way to keep note of all of the events we go through with Harper.  It helps us to have a record of when things have happened, and also to look back for patterns as we go through more and more of these episodes.  I share for those of you who ask for specific ways to pray for her.  That being said, we awoke to another eventful day with Harper today.  At first I was amazed that I was able to get up before her and get the day going, but now I know that I should be alarmed when she’s off of her schedule.  She did wake up and make it out of bed on her own, but when she came to me she was barely able to walk, was not talking, and she couldn’t maintain eye contact with me.

It amazes me how much of a routine we have developed with these seizures now.  Everyone stays so calm.  My oldest daughter automatically starts noting the time for me as we get Harper on her side on a quilt on the floor and gather towels for when she vomits.  We get the phones ready- one for me to dial 9-1-1 and the other for the girls to call family, and get the emergency medicine ready for use.  There’s even a bag packed and ready to go with a day’s worth of essentials for Harper and Mom.

So far every seizure has been different.  Just Sunday she seized while we were at church- running wide open down the hall and suddenly fell and started mildly seizing.  On that day she had a series of small seizures over 15-20 minutes and then fell fast asleep and that was it.  Today started as the series of small seizures over ten minutes, but then progressed into a full-blown seizure that lasted ten minutes straight.  This seizure was also impairing the left side of her body, whereas we normally see it only on the right side.  However, because her entire body was seizing and her muscles were so tight, I was not able to administer her meds- and then she came out of it and started fighting me about the time the paramedics arrived.

Due to our last experience and her tendency to relapse into seizures during these spells, we were strongly advised to go on to the hospital, and Harper continued to fight all the way there.  She was not thrilled to ride in the ambulance, and did not care to have everyone mess with her today.  We were greeted by the same doctor we saw just a couple of weeks ago, and he remembered us and knew exactly how to proceed.  He ordered the blood work, but getting that blood was yet another battle.  For some reason it is a major ordeal to gain IV access on Harper- she doesn’t have easy veins.  Today was no exception, and it was particularly challenging given her feisty temperament… She was much more alert today than she has been in the past.  The first team of nurses that attempted laughed at her strong fight and told me to be encouraged because she is obviously going to do great things with all of that strength and determination!

A team came down from the pediatric unit and we all worked together to hold her down while they finally got her IV started.  The blood work for today only showed that she was dehydrated, so she was given IV fluids and we were able to go home.  She did not seize anymore at the hospital, so we were able to avoid any of those awful, heavy-duty medications that make her so loopy and unable to function, praise God!  They are also testing her levels of seizure medication to see where we stand with her current dosage- too little can cause seizures, but too much can cause seizures.  And of course we’re also concerned that she may not be getting the full dose in her each time due to the fight we have at home over medicine, so these test results should shed some light on that for us.

This journey is becoming quite surreal for me at this stage.  So often these days I feel like I’m watching someone else’s life.  I don’t really have the words for it.  We were sent into such a whirlwind of crazy events when Harper was first born, and her first year was a steady progression forward, just watching God answer prayers as she met milestone after milestone.  Then we had a year of “normal.”  And then the first seizure came, and we had close to a year of “normal” again… but now it seems that this strange turn of events is our new normal as the seizures come more and more frequently.  She’s had three seizure episodes (episodes because she has multiple seizures each time) in barely two and a half weeks, two of which resulted in ambulance rides and hospital visits.  We don’t know yet why she’s suddenly having them more and more or what is triggering them.

I’ve spent my life planning out my next step.  When things happen, I want to know what the game plan is.  Well, here is my game plan- wait.  We take life a day at a time, sometimes an hour (or a minute) at a time.  We cannot predict what comes next.  We prepare as much as we can- we keep our appointments, administer the meds, document the changes, keep the bags packed, develop our emergency plans, keep her within arms reach 24/7 (yes, she even sleeps with us now), avoid germs as much as possible- but the truth is life is unpredictable.  The only thing certain, the only constant, the only assurance we have, is that God is faithful.  He has plans for our good, and for Harper’s good, and those plans are to ultimately bring Him glory.  So, we learn to be patient, we learn to wait, we learn to accept, and we learn to trust.

Wait patiently for the LORD. Be brave and courageous. Yes, wait patiently for the LORD.
-Psalm 27:14

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

Trust in the LORD with all your heart
         And do not lean on your own understanding.
In all your ways acknowledge Him,
         And He will make your paths straight.
-Proverbs 3:5-6

My help

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I’m not even gonna lie… The past three days have felt like at least three weeks.  Considering everything, Harper is once again doing amazingly well.  She is back to talking and playing and being silly in between her meltdowns (aka the Keppra cries).  Her appetite is up and down, her moods are swinging, and her sleep is restless at best, but we can see that personality that we so adore.

But, being sleep deprived and dealing with the screaming spells and watching her every breath and the constant worry has stress levels high around here.  So, today, we decided to escape the confines of our house and venture outside.  I’m a bit leery of public excursions still (crowds and germs and overstimulation and meltdowns, oh my!) so we drove to see Daddy.

As we were riding along, the girls were all quiet, Mommy was deep in thought, and the radio was playing softly in the background.  It was oddly peaceful for our crew, and then I heard the sweetest little voice singing, “My help comes from you…”  Apparently the song Shoulders by for King & Country was on, and Harper decided to sing along.

I can’t say for sure what Harper’s purpose is- why she has had to endure what she has or what her future holds.  But I know that God uses her daily to remind me of Who He is, to direct my eyes back to Him, to show me that He is still there.  Hearing her little voice singing out where her help comes from shifted my focus in that moment to the words in Psalm 121:

I will lift up mine eyes unto the hills, from whence cometh my help.

My help cometh from the Lord, which made heaven and earth.

He will not suffer thy foot to be moved: he that keepeth thee will not slumber.

Behold, he that keepeth Israel shall neither slumber nor sleep.

The Lord is thy keeper: the Lord is thy shade upon thy right hand.

The sun shall not smite thee by day, nor the moon by night.

The Lord shall preserve thee from all evil: he shall preserve thy soul.

The Lord shall preserve thy going out and thy coming in from this time forth, and even for evermore.

Friends, this world offers all kinds of help, and some of it is indeed beneficial.  But our ultimate source of help for any and every situation big or small is God.  He alone can meet our every need.  He alone can sustain us.  He is my keeper, He is my daughter’s keeper, and He is your keeper.  Whatever you’re facing, lift your eyes unto the hills…

Sunday’s Scripture… Even if

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Today’s Scripture is from the book of Daniel…

If we are thrown into the blazing furnace, the God we serve is able to save us from it, and He will rescue us from your hand, O king.  But even if He does not, we want you to know, O king, that we will not serve your gods or worship the image of gold you have set up.  -Daniel 3:17-18

This passage is spoken by Shadrach, Meshach, and Abednego in response to the king’s threats to toss them into the furnace.  They literally were facing the fire, lives on the line, and their faith remained unwaivering.  And what strikes me here is the phrase, “and even if He does not.”  They acknowledge that the God they serve is most certainly capable of rescuing them from their circumstances, but they also choose to accept that He may opt not to rescue them- and they’ll worship Him anyway.  I heard someone once refer to this as the “even-if” kind of faith… Trusting God’s plans even if it doesn’t look like what you expect or desire.

Y’all, I’m struggling with this kind of faith this week.  It’s been a hard two weeks in our family.  Two weeks ago today I wrote about my youngest having a small seizure, and that it was no big deal and to be expected.  That was easy to say when it was just one small one-minute seizure.  But Friday morning we woke up around 6:30 to find her in another seizure.  She happened to be in the bed with us, so her shaking woke us up- but we don’t know how long she had been seizing before we actually woke up.  We started timing it once we were aware of what was happening, and it lasted about four minutes and then stopped on its own so we did not have to administer her emergency medication… But it was scary.  We’ve now witnessed a few of these episodes with Harper, but they don’t get easier… It is a gut-wrenching, heart-breaking feeling to watch your spunky, full-of-life child be so vulnerable and helpless.

With these seizures we have also been seeing some other changes in Harper.  Her mood swings are intense- We have the typical terrible two’s, but it’s amplified by her lack of sleep, an incredible physical strength, and these new screaming spells that come on for no apparent reason and can last for a really long time (and no, they are not like toddler tantrums).  She’s been eating very little, naps about once a week, and is up and down through the night once she finally falls asleep.  Now that she has started having these seizures, she has been moved from the toddler bed in our room into our bed so that we can feel her when she starts seizing… Not an ideal sleeping situation, but it’s the best way we know how to get any rest at this point in the game.  We have a message in to her neurologist at Duke to update him on what we are seeing, and her next MRI is currently scheduled for September.

I have hesitated to tell people that we are dealing with this.  I’ve been so full of hope and we’ve seen such great strides forward for so long that it’s hard to admit things aren’t perfect.  I’m so grateful to God for bringing us this far that it feels wrong to say there’s a problem now.  I feel guilty for any kind of complaining about things being hard because they could be so much worse.  And I feel guilty for being afraid because my faith should be greater than that.  Plus, speaking it makes it more real, and I don’t want this to be a real thing for my daughter or our family.

But I am drained.  I am weary.  I am exhausted.  And it isn’t just physically.  This new way of living is mentally and emotionally wearing, and the worry is weighing heavy on this mommy’s heart.  I know all of the verses about not worrying, I know where my hope lies, I know Who ultimately is in control, I know my help and my strength comes from the Lord… My head knows the Bible answers, but my heart is struggling with the “even-if” faith.

We’ve seen miracles happen.  We’ve been granted an incredible blessing in Harper.  I don’t for a minute discredit all the that Lord has done for us… We are miles away from where we were two years ago.  And I know He has a plan.  But in these moments, I’m a little bit scared of what His plan may entail.  I know He can totally heal our girl- but I also know that His plans are not our plans and I have to be willing to trust Him and praise Him “even if He does not.”  Because regardless of what happens, He is still God and He is still good… even if.

he is still good

Choosing to trust…

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  This post today is for me.  Because there are days when fear creeps in, when anxiety seizes my soul, when my heart just feels troubled… And these are the days that I have to make a concerted effort to trust.

Trust doesn’t come naturally.  I’ve had people talk about what faith we have- and I’m shocked.  Surprised that anyone would think that.  Because I am a messy human with messy human instincts and some days I just.  Don’t.  Know.  Trusting doesn’t make sense and doesn’t come easy and scares me to death.  

By now, most of you reading this blog know all about my Harper.  And you know that after a year of no complications she decided to stir things up and have a massive, life-threatening seizure several months ago, which earned her new medications and a bed in mom and dad’s room.  It was a reminder that her condition is unpredictable, and that while we trust God’s plans for her, things can be uncertain.  Well, aside from some sleeping issues and mood swings, she has recovered well from that episode and we have slowly loosened the reigns a little and have felt more confident that she’s back to normal.

But yesterday morning, in the wee hours before daylight, we awoke to her vomiting.  She did it three times, and seized on the third.  It was a small seizure, only about a minute long, and she was in my arms when it happened, so it really wasn’t cause for alarm.  She went to sleep afterwards, and was completely back to normal when she awoke later.

So, medically speaking, I know this is no need for concern.  Lots of people deal with seizures every day and this one was not bad at all.  Honestly, episodes like that are almost expected every so often given the way her brain looks.  They actually expect much worse, so we are blessed if this is all we have to handle.  But, it happened, and it has this mama back on high-alert… Because how would that have panned out had I not been right there when it happened?  I know not to play the “what-if” game, but I now have this drive to be even more vigilant once again in watching and trying to protect her.

However, I have to choose to trust.  I can’t protect any of my children from everything.  Ultimately they aren’t even mine- they’re His, and I have to believe in the promises of the One who can protect them, the One who formed them and designed them and numbered their days.  When Satan tries to fill my mind with fear and doubts and “what-ifs,” I have to take those thoughts captive and instead fill up with the Good News of the One who loves my babies even more than I do.  Sometimes trust is a choice, something we have to work at… And today my prayer is that I keep making that choice.  

When I am afraid, I put my trust in you. In God, whose word I praise, in God I trust; I shall not be afraid. What can flesh do to me?  -Psalm 56:3-4

There is no fear in love, but perfect love casts out fear. For fear has to do with punishment, and whoever fears has not been perfected in love.  -I John 4:18

You keep him in perfect peace whose mind is stayed on you, because he trusts in you. Trust in the Lord forever, for the Lord God is an everlasting rock.  -Isaiah 26:3-4

Do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.  -Philippians 4:6-7

Peace I leave with you; my peace I give to you. Not as the world gives do I give to you. Let not your hearts be troubled, neither let them be afraid.  -John 14:27

It’s about time…

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Some things take time… A tree growing, cooking a roast, traveling around the world, and Harper graduating from the developmental clinic.  But today, two years later, she finally did!

We’ve had two appointments in the past week- Harper’s two year well-check and the developmental testing today.  She is right on track with her growth, staying steadily in the middle “normal” range, and for the first time since birth her head circumference is actually on the chart.  It’s still in the top percentile, but it’s on the graph!

Developmentally speaking Harper is exactly where she should be.  She excelled on her tests today, scoring at her age and higher in all areas.  They were wowed by her speech development, and impressed with her attention and determination to the tasks presented to her.  I was one proud mama!

The highlight of the visit today was talking with Dr. D, the doctor who assessed Harper the day she was born.  He told me he remembers seeing her and thinking how perfect she looked, and being shocked at the scans of her brain that indicated a totally different story.  He said he makes sure he shows the team her images and her records so that they realize what an incredible story she has.  “Absolutely amazing” was repeated over and over again… And while I know and agree that God’s work in Harper is absolutely amazing, these appointments are such a great reminder to me to embrace the miracle we’ve been given and to thank God for what He has done and is continuing to do in our family.  There really will never be enough time to fully express all the gratitude I have for the gift we’ve been given.

But thanks be to God! He gives us the victory through our Lord Jesus Christ.        –I Corinthians 15:57



She is joy 

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Harper is the picture of what joy should look like.  An entire day of being poked and prodded and drug from one appointment to another, and she literally bounced down the hospital halls, greeting everyone she saw with smiles and her sing-song voice.  She sat patiently as they put probes all over her head, laid quietly as they ran the EEG, and allowed them to remove it all and clean her head without a whimper. The results of her testing were good.  Basically her medication is doing the job and her EEG did not show any seizure activity.  There was a discrepancy in her test between the sides of her brain, indicating that one side is not as strong.  This is due to the areas of cysts and dead brain tissue that she has, and could be the cause of the seizures… But once again, we can’t say what that will mean for the future.  It could become more of an issue down the road in terms of her learning and development, which we’ve always been warned of, but only time will tell as she grows and develops.  For now she seems to be doing just fine! We did discuss the side effects of her medication with the neurologist.  Harper has mood swings, a loss of appetite, and she does not sleep well at all.  She’s very restless and has a difficult time staying asleep, and moves constantly when sleeping.  We are trying a prescription vitamin for a month to see if that helps, and if not we’ll reevaluate with the doctors. Now we do six months of this routine, and then back to Duke for another EEG and consult with the neurologist- which will also be around the same time as our next MRI and neurosurgeon appointment.  Next week is a follow up with our pediatrician, then developmental testing at the hospital clinic here in town the following week… And then, hopefully, an uneventful spring! As I start to feel weary of this journey, fearful of the unknowns, and, well, just plain whiny, I think of my girl… Of her fight for life, her encouragement to others, her courage and strength in these scary situations, and her bubbly, giggly joy that overflows… And I know that God has blessed me with a constant reminder of His goodness in all circumstances.

Two

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My baby girl is two. TWO! That means our baby years are behind us and we are fully into toddlerhood. That right there is enough to bring on the waterworks, especially knowing that this is our last “baby”!

But this day brings with it great emotions for even more reasons. While we celebrate two  amazing years with our miracle baby, the memories of that day and the days that followed are not all grand. It was a day of fear and uncertainty, a day of tears and heartbreak as we faced an unknown future. It was a time of accepting that all of our “plans” had been made in vain, and that life is far more precious than we realized. It was learning firsthand that God is still good even when things seem terribly wrong. It was relinquishing control and embracing His plans in place of my own desires.IMG_7672

As a mommy, it is hard to admit that this day two years ago was not one of the best days of my life, and that even though we have been blessed and have come so far, I struggle with my thoughts and emotions on this day. As I remember the loneliness of being separated from the baby I carried for nine months and the fight she faced in the weeks that followed, I hurt. It’s a pain that few can understand. But there is healing that comes with truth, and once I admit the struggle, I am free to count the blessings once again.

And this has been another year of blessings. Dancing (oh, the dancing!) and laughter and words and love… Excitement over milestones reached, joy in accepting each day as a gift. We have a girl who loves life, who makes us smile every hour, who is a constant reminder to embrace this moment. She’s happy and mischievous and bouncy and wild.  She keeps us on our toes and shows us Who is in control. She is His, and has proven that He creates us each uniquely for a purpose.

So as we celebrate this miraculous gift of life today, I am choosing to focus not on all the painful memories of that day, but instead on one amazing moment… The moment I heard her very first cry. It was the moment I saw that she was already proving doctors wrong, the first moment she showed us her strength and fire. It was loud and clear, a warrior cry, and it was then I realized that she was a fighter with a purpose. For me, that first cry was a promise from the giver of life… And that’s what I choose to remember today!

“From life’s first cry to final breath, Jesus commands my destiny.
No power of hell, no scheme of man, can ever pluck me from His hand…”
(-In Christ Alone)

Update

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IMG_7467     It has now been almost two weeks since Harper’s seizure and our trip to the hospital.  I would love to say that things have just hopped right back to normal, but of course they haven’t.  I guess we are just adapting to a new normal at this stage.  She is adjusting to the anti-seizure medications, but it’s a slow process.  The side effects have been a bit tough on her, making her tired and spacey, decreasing her energy, and affecting her moods and sleep patterns.  She doesn’t talk as much, doesn’t run around and dance and play as much, and has struggled with getting “good” sleep.  However, the doctor says that is all to be expected and that hopefully it will get better as time goes on.

The good news is that we haven’t seen any more major seizures.  In two weeks, she’s only had two “episodes” that seemed to be small seizures… Both were only about a minute long and happened really fast, so that was a huge relief!  The pediatrician checked her out and said she looks “amazing” considering what she went through, and we haven’t seen any regression in developmental skills.  While she is doing great and we haven’t seen anything close to what we saw on that night two weeks ago, I am still nervous about letting her out of my sight, and we’ve moved a toddler bed into our room for her so that we can hear her if anything happens overnight again.  We have monitors and video now for her room, but I worry that I just wouldn’t hear her on those if I was asleep.  So, right beside me she stays!

Unfortunately, despite my efforts to quarantine her as much as possible, she has still managed to stay sick.  She has had cold, cough, and fever pretty much since the seizure, but no infections, so hopefully her immune system will kick into high gear soon and beat this stuff!  This means we are watching her even more closely as this lowers her threshold for seizure activity.

For now we just keep trucking on.  We are gradually getting more accustomed to our “new normals,” and we have lots of appointments in the next month that will hopefully have us more and more back on track.  In March Harper will go back to Duke for an EEG and a consult with her neurologist, and we also will go to the NICU clinic here in Wilmington for developmental testing (hopefully our last round there!).  This whole experience has been a difficult reality check as we have been reminded that there are so many uncertainties with Harper.  If we focus on all that can happen and go wrong, it can drown us.  We have to choose instead to focus on all the miracles God has worked in her, and trust that He isn’t finished yet.  He has big plans for her, and He has promised to walk this journey with us.  As the saying goes, we may not know all the why’s, but we know Who, and that’s all we need!

The interrupted calm…

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We interrupt this calm to bring you the storm… That’s the story of our week.  Life has been “normal.”  Raegan has been in school, doing great, and I’ve been home with the two little girls.  Maddie has been breezing through homeschool, and Harper has been a typical toddler, growing and exploring and testing her limits.  We had broken away from that life of doctors and therapy and medications and fallen into a comfortable, happy place. And Tuesday night that was all brought to a screeching halt.  We had a great day, a calm evening, and got all the girls settled into bed with no trouble.  In fact, I was celebrating because Harper had gone down so easily- she had gotten to be a bit of a handful at bedtime in the past week and wasn’t sleeping as well, so I was excited that she was so easily settled.  Then, as I was relaxing and getting ready for bed, I heard a sound through the baby monitor that made me pause.  I thought Harper was playing with something as I heard this rhythmic tapping sound, and I hesitated to go into her room- I was worried that if she was awake and saw me she would start crying and not go to sleep (hopefully other moms can understand my dilemma!).  But I knew I couldn’t relax until I saw that she was definitely okay, so I opened her door.

Long story short, she was not okay.  She had vomited in her crib and was face down in it, seizing.  Initially we thought she was choking, but her seizure was interfering with her breathing.  I called 9-1-1, and somehow the operator was able to make some sense of my hysterics, and the paramedics arrived within ten minutes.  The gentleman ran in, immediately snatched Harper up, and ran her out to the ambulance.

By the time we reached the hospital they had managed to stop the seizure, but she had suffered through it for about 40 minutes and was struggling to breathe on her own. Once she was stabilized in the trauma room, they transported her to a c/t scan, and then we were put in a holding room in the ER as we waited for an actual room to open up in the children’s hospital.  However, the doctors decided to consult with her medical team at Duke, and it was decided that she should be airlifted to them.  When the flight team arrived to transport her to the helicopter, she was awake, and was not at all excited to be strapped to a stretcher and taken away from her mommy and daddy.  (And we were not happy to let her go, either!)  They did allow us to walk out to the pad with her, and to tell her goodbye in the helicopter before they took off.  As soon as she was secure, we hit the road for Duke.

Harper arrived at Duke around 3:15 a.m., and we arrived just after 5:00 a.m.  The neurosurgeons looked at her c/t scan and gave us the all clear from their standpoint- her cysts have not grown any, no further fluid accumulation, and everything looks stable still.  After several hours we were admitted to a room on the pediatric floor, and there we met with a pediatric team and a neurology team.  The final verdict was that there really was nothing to do- this was a result of what we already knew.  Harper’s brain is abnormal and she still has porencephalic cysts, and she is a high risk for seizures.  We have been blessed to have a nice, calm, “normal” past year with her, but this was a wake-up call to the reality of her condition…. that there are lots of unknowns and no one can predict what she will do.

The official primary diagnosis we received for Harper is “status epilepticus.”  That’s just a way of saying life-threatening seizures that last longer than 30 minutes and can be difficult to stop.  She has earned long-term anti-seizure medication now, which we are working on.  It makes her irritable and sleepy, and she takes it twice a day, so our girl is not quite the same as she was before.  However, we are hoping that once her body adapts to being back on medication she will return to her happy, cheerful self.    We were also told that simple things like the common cold and viruses increase the likelihood of having these seizures, so we are learning to be more cautious about germ exposure! It is a lot to take in… We have emergency meds to carry with us at all times in the event of a seizure, and we are on pins and needles now, just waiting to see if it happens again.  For now, she doesn’t leave Mommy’s sight!  We have a lot to learn about prevention and awareness and how to respond, as well as options for monitoring her, particularly during the night hours.  Of course, we are all praying that we don’t have to experience this again, that the meds will keep things under control and that we can eventually relax a little and feel confident that she isn’t in danger.  It’s a scary road to walk as a parent… This is my daughter, the one we have prayed for and fought for, and the image of how I found her the other night haunts me.  I have been shaken to the core, but I am constantly reminded that God always keeps His promises, and ultimately she is His.  He has not brought us this far to leave us!

“No one will be able to stand against you all the days of your life.  As I was with Moses, so I will be with you; I will never leave you nor forsake you.”
-Joshua 1:5

Whoever dwells in the shelter of the Most High will rest in the shadow of the Almighty. I will say of the Lord, “He is my refuge and my fortress, my God, in whom I trust.”

Surely he will save you from the fowler’s snare and from the deadly pestilence. He will cover you with his feathers, and under his wings you will find refuge; his faithfulness will be your shield and rampart. You will not fear the terror of night, nor the arrow that flies by day, nor the pestilence that stalks in the darkness, nor the plague that destroys at midday. A thousand may fall at your side, ten thousand at your right hand, but it will not come near you. You will only observe with your eyes     and see the punishment of the wicked.

If you say, “The Lord is my refuge,”  and you make the Most High your dwelling, no harm will overtake you, no disaster will come near your tent. For he will command his angels concerning you to guard you in all your ways; they will lift you up in their hands, so that you will not strike your foot against a stone. You will tread on the lion and the cobra; you will trample the great lion and the serpent.

“Because he loves me,” says the Lord, “I will rescue him; I will protect him, for he acknowledges my name. He will call on me, and I will answer him; I will be with him in trouble, I will deliver him and honor him. With long life I will satisfy him and show him my salvation.”
-Psalm 91

Waking up in the ER

Waking up in the ER

Getting ready for her second flight to Duke

Getting ready for her second flight to Duke

Cruising the halls at Duke

Cruising the halls at Duke

Developmental Testing Results

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Slow and steady wins the race- that’s the latest verdict on Harper’s developmental progress.  This morning she took on the NICU developmental clinic here in Wilmington, and she handled it like a champ.  She met with a nurse, a therapist, a psychologist, and Dr. D, the very first doctor to work with Harper when she was born.

Harper was tested in the areas of cognitive, language, fine motor, and gross motor development, as well as measured and weighed to ensure her physical growth is on target (which, as we all know by looking at her, is perfectly fine!).

Harper showed advanced skills in her cognitive and language development, and for the first time ever was right on target with her fine motor development!  (She has an incredible OT whom we love!). Gross motor skills proved to be the area of greatest concern this go round.  She walks and gets around just fine, but can be a little unsteady on her feet and trips and falls a lot.  She also needs some work on things like running and jumping and climbing and stepping up and down… Things that will come with time and practice, and that Mommy isn’t in a hurry to push.  The less climbing she does at this stage, the less I worry about head injuries!

We now have to follow up with our case manager and therapists to determine what services we can wean from based on today’s report.  We also will follow up for further testing again in six months.

I catch myself feeling discouraged at times when I leave those appointments and she doesn’t “ace” all the tests.  Sometimes I think I just want to hear that she’s totally in the clear and we can put all this behind us… But that’s not the journey God has us on.  And as Dr. D reminded me today, she is amazing.  Given her past and what was predicted for her, we are seeing miracles every day.  Yes, I’d like to move on with no further testing or scans or therapies or special doctors, but what a gift we’ve been given!  She has come so much farther than anyone ever dreamed, and she’s continuing to show us each day the mighty power of a God who heals and restores.  Let’s pray that we all can learn to accept that the One who is in control has a perfectly designed plan, and that His plans and His timing are all for our good!