Monday, March 20, 2017

The Gospel According to a Minivan

Saturday night we were the recipients of extravagant generosity. I've cried three times since just thinking about how good the Lord is to us, and how blessed we are to have the co-workers and friends that we do.
We were given a new minivan. A MINIVAN. Not just a run-of-the-mill breadbox-shaped soccer mom van, either. It was a dream vehicle. We call it the spaceship. Bells and whistles and everything in between. It was a vehicle we knew would take years of saving to afford. Years of being in debt to obtain. It was simply: out of reach. And I was ok with that. I'm a practical person and would have continued to press on with our oldschool 1999 Dodge minivan with the hand-crank windows and the dashboard that went kaput 3 months ago.  With a short-list of mechanical problems (not to mention 160K miles), we knew it was less than reliable, but it was running and functional and we'd make due.

But this generous gift through my husband's company came purely out of appreciation and care for our family. It was extremely thoughtful and personalized to our needs. They found a way to pick out EXACTLY what we wanted (albeit something we never thought we'd have). And they handed us the keys without any expectations. They joyfully gave with smiles on their faces, and the love of Jesus bursting at the seams.

I've never received such a gift to this extent before (though we have received blessings of generosity from many over the years, which we are grateful for). But this to me seems like a beautiful picture of the Gospel. A picture of our Heavenly Father and how He cares for His children without exclusions or caveats or restrictions.

When God sent His only Son to the World for our redemption, it was a gift we could not give ourselves, that could not be bought or obtained even through great effort and hard work. Salvation was given to us FREELY.

And what should our response to this be?

Well, when given this van, my responses were all over the place. Speechlessness. Shock. Disbelief. Overwhelming gratitude. Some unexpected feelings, too. Suspicion, "Why me? What's the catch? What do I have to do to repay you? What do you want from me?" And even guilt, "This is too much and too good for me. I don't deserve this. Good things like this don't happen to people like me."

All of a sudden, I see the parallel between the Gospel and a minivan.

Just as we were given something freely that we couldn't earn on our own. So it was with God, generously and graciously offering us the gift of Eternal Life--something we could not achieve on our own merit.

And our response? Shouldn't our gratitude be even more so than how you would respond to receiving a minivan? Or if Uncle Joe left you a million dollar trust fund? Or if someone paid off a school or hospital bill anonymously? Or even if a friend brought you a meal and watched your kids just because they love you?

Shouldn't we cry and shout and be moved to speechlessness and our hearts be overflowing with thankfulness for his GREAT GENEROSITY through Christ and the cross? Shouldn't this eternal gift CHANGE us and motivate us and move us towards repentance and gratitude?

This minivan is a tangible reminder for me to be in awe of God's grace towards us. To appreciate and be grateful for his goodness and kindness, no matter what life brings... even when we don't get the minivan. Even when prayers aren't answered when or how we expect. Even when life is tight and tough and hard and sorrowful. I'm renewed in trusting that His timing is good and perfect and we are not forgotten. We are loved. And His gift of Salvation has already proven that.

"Now to Him who is able to do exceedingly abundantly above all that we ask or think, according to the power that works in us, to Him be glory in the church by Christ Jesus to all generations, forever and ever. Amen." --Ephesians 3:20-21

And now our response is: Let us use this gift to further glorify Him. It will serve our family needs for many years... and we are thankful.

Turn your eyes upon Jesus,
Look full in His wonderful face,
And the things of earth will grow strangely dim,
In the light of His glory and grace.

--Helen H. Lemmel, 1922

Wednesday, April 6, 2016

STXBP1: Brielle explained, but not defined

I am happy to report that we have the long-awaited answers to Brielle's health issues. ANSWERS. Full, weighty, real, hard, factual answers.

We had a whole-exome sequencing panel done for genetic testing 4 months ago. STXBP1 might sound like computer codes or a Star Trek spaceship, but to us, those 6 letters have consumed our world because it [finally] explains our daughter.  Our very unique one-of-a-kind daughter with a neuro-developmental genetic disorder that only affects about 150 reported cases WORLDWIDE.

STXBP1 means nothing to anyone unless you google it, and even then, it's a lot of medical jargon to filter through. But all anyone, including ourselves, wants to know is, "what does this mean for Brielle?"

Good question. And we kind of know some of the answer. Sort of.

But first, I want to say, I am thankful.

Thankful for a diagnosis. A name to explain everything. No more unanswered questions and fears and worries of the unknown.

I am thankful for the timing of technology. The specific genetic testing we did has only been accessible to the public for a handful a years. STXBP1 has probably only been named for about a decade. It is a newly-discovered genetic disorder. Brielle has been diagnosed very young compared to many, and for that I am grateful.

Thankful we are not alone. We are blessed to have already found a support group via Facebook specifically dedicated to parents of kids with this medical condition. Almost 300 members, 70 documented children represented. I have learned more about this disorder in just a few short weeks from this community than any amount of googling or talking with doctors and specialists. It is invaluable.

I am thankful that, long ago, the Lord prepared my heart for such a time as this. Since before I was born He planned to enable me to understand what it is like to live with a family member who has special needs and disabilities. My mother, who battled Multiple Sclerosis for about 25 years, unknowingly gave me the gift of understanding. I grew up watching her struggle with this disease, and watched others struggle to know how to interact with her and help her. What a beautiful gift she gave to her granddaughter that she never even had the opportunity to meet: the gift of [unwanted at the time] experience that has prepared my heart to care for my child in a unique way. Not to say that I don't struggle and it's not hard. But I do feel very grateful for my own upbringing, concerning Brielle's needs.

So, what does this mean for Brielle specifically? What will life look like for her long-term?

STXBP1 is primarily a genetic disorder that affects development, intellect, and often causes seizures.
She may stop [and restart later] seizure activity. She will have limited motor function--but to what degree, we don't know. She will have intellectual disabilities and limitations. She will most likely live a normal life-span, assuming no other medical conditions complicate things. And we expect that she will probably not live independently from us. It explains her muscle weakness, her oral fixations (sorry if you ever got a "love bite" from Brielle ;), her lack of communication, her seizures, and her lack of development in general.

What this disorder doesn't explain is her future. Each child is different. Each child has varying degrees of disability, communication, seizure activity, and skills. Some run, jump, talk, and go to school. Others do none of those things and are more medically fragile. Brielle, so far, is somewhere in the middle.
So Brielle will need to show us what she can do, what skills she can gain, what she can achieve over the years. We will go at her pace and timing--trusting that it's God's timing. Genetics may explain her on paper, but they don't define who she is and how God sees her. It can't define God's ability to work in her life in whatever way He sees fit. And it can't explain her beautiful heart.

Although we wish this was a "find X disease and give X treatment and then she is cured" situation... God has bigger plans than we can understand. We don't doubt His goodness. We're not angry or fearful. He has given us peace and a growing love and understanding for our precious girl. We continue to receive the gift and consider it a blessing to parent such a unique and special child.

Just days after we received her diagnosis, I heard this song on the radio. Peace overcame me as I was reminded of Who cares the most for us. Who cares the most for our daughter? It is the very One who created her. She is not a mistake, and He is not surprised. He is still in control. He will anchor us, sustain us, and carry us through.

You, as our friends and family, have been our greatest encouragement through this journey. The way you care for, pray for, and love on our daughter is unmatched... and we are grateful.
I hope you don't see this as a journey ending. It's really just beginning! We covet your continued prayers and encouragement as we embark on a lifelong journey in caring for Brielle. It will take a village, and we are glad you are in our village!

**In other smaller but still important news: Brielle's thyroid is functioning at normal levels again thanks to her medication over the past 6 months. And she has gained 3 pounds and grown 1.3" during that time!

Saturday, October 24, 2015

What a difference two months can make!

This is a post that I have been anticipating and hoping to write for a very long time. It wouldn't be too much of a stretch to label these past two months as a series of mini-miracles and milestones in Brielle's little world. We are far from through searching for all the answers, and I know she has a long road of progress ahead of her. However, the Lord continues to keep us hopeful and has brought us far on her journey in a short time.

Since we last wrote, Brielle has seen three specialists, had another EEG, switched medications, and added one medication. She also accomplished a big milestone and is more active than we've ever seen! This summer was certainly a whirlwind for her.

In a nutshell, we now have her seizures under control with the new medication. And we suspect that removing the previous medication is contributing to her alertness, new activity, and happy demeanor. She went from an occasional crawl here and there to finding myself saying multiple times a day, "Where did Brielle go?" I have never been so happy to have to fully "baby proof" our entire house! She now crawls from room to room on a daily basis with gusto and it is pure joy to watch.

I guess Brielle figured while she was at it, she may as well start pulling up to standing too! In the past week she has mastered this skill and she looks for anything and everything to pull up on now. We even had to lower her crib mattress! She has also made attempts to "cruise" on furniture, so knowing her personality--once she figures it out, she'll have that mastered in no time too!

one-handed standing & her adorable ankle braces
standing up! she now does this
without cheerio motivation ;)

Six months ago I certainly had my doubts about whether or not I would see her crawling or pulling to stand. Now I have hope that perhaps next year we might see her walking as well! We are so proud of her progress and often have a prayer of thanksgiving in our hearts as we see her getting around so easily. She seems so pleased with her accomplishments, too. :)

One other huge praise report is that FINALLY after almost two years of countless doctors and tests, we have an answer to some of her concerns. She has been diagnosed with hypothyroidism and is now taking thyroid medication to increase those hormone levels. I try not to focus on the "why didn't someone catch this earlier" ...shouldacouldawoulda. I am just thankful for SOMETHING to finally make sense, and something that can easily be fixed. This could improve many things for her... I'm sure in ways that we will not even expect. We are very hopeful that we will see more progress, activity, strength, and alertness over the next six months or so.

So, enjoy some happy pictures and videos of our darling little girl showing off her new skills, her new adorable ankle braces, and her proud smiles of a job well done. We thank you for your endless prayers and ask they continue as we move forward with hope.

swinging is her favorite!

lowered the crib. proud look ;)

love this smile!

Wednesday, August 19, 2015

You will lead us through the storms

It's been a rough week in Brielle's world. Her seizures have become uncontrolled for the past week, despite medication, and we now have a myriad of tests and doctor visits lined up once again, just like this time last year. Another EEG, a new pediatric neurologist... and we've scheduled a consult with a genetic counselor in Fort Worth next month as well, to get a second opinion before running labs for the genetic tests. So far, every single test, lab, and appointment has left everyone clueless because she is the healthiest mystery ever. All tests come back negative, all labs come back clear. On paper, she is perfectly healthy. But obviously something is still amiss.

But God is still good. And as I rushed out to the pharmacy to pick up a second prescription for our little girl today, this song comes on the radio. Tears burn at the corner of my eyes and I can't help but sing-pray the song out loud. It is my heart cry in this season. It is all we can do. It is especially what we should do.

"My Lighthouse" 
by Rend Collective

In my wrestling and in my doubts
In my failures You won't walk out
Your great love will lead me through
You are the peace in my troubled sea
You are the peace in my troubled sea
In the silence, You won't let go
In my questions, Your truth will hold
Your great love will lead me through
You are the peace in my troubled sea
You are the peace in my troubled sea
My Lighthouse, my lighthouse
Shining in the darkness, I will follow You
My Lighthouse, my Lighthouse
I will trust the promise, 
You will carry me safe to shore
Safe to shore
I won't fear what tomorrow brings
With each morning I'll rise and sing
My God's love will lead me through
You are the peace in my troubled sea
You are the peace in my troubled sea
Fire before us, You're the brightest
You will lead us through the storms

He will carry us safe to shore. He is our peace when the storms rage. Instead of asking "why send the storm?" or "Are you here when the skies grow black and the fear begins to rise in my heart?"
But I know He will carry our daughter through to safety, and He brings peace in the midst of stormy hearts and unanswered questions. 

In other news, this little one is CRAWLING now and pulling on furniture to high-knees! We are hopeful that the next step is pulling to stand. We just had an orthopedic appointment today and she will be getting some ankle braces and some other equipment to strengthen her muscles and bones, and encourage her next goals: STAND AND WALK!


Thanks for STANDING with us in prayer for our sweet Brielle.

Thursday, May 14, 2015

In darkness, we embrace the gift

We continue with questions as we swim through the murky waters of an unknown future for our daughter. But we are never without hope. Never.
Just as we trusted the God of the universe with every intricate detail of pregnancy and delivery of this beautiful girl, we will trust Him with every day of her life. Regardless of the unlikely, uncertain kind of life she has right now. Regardless of the number of her days. Regardless of her needs. We know He can meet them, and in many ways better than we ever could.

Brielle is almost 29 months now. Her therapy seems to help in small ways, and she is thoroughly enjoying her hippotherapy (horse therapy) once a week now, too! But progress is painfully slow--slower than we hoped for-- and we are reaching a threshold of patience once again. A crossroads is emerging, and we must once again choose which path to take, which tests to run, which road to go down with our little girl in our search for answers.

Our next step seems to be genetic testing. Something we'd considered before, but held off to see if removing seizures from the equation was the only hindrance. Now, we're not so convinced this was just about seizures. Perhaps there's something else going on that we need to address.

Here's the thing with genetic testing. It is scary. It is overwhelming. It is crazy expensive. And, even if conclusive, it is often left with no real cure or answer. Just a label or title. A name to put to the problem we're facing. It also brings about fear. Fear of finding an answer we don't want to hear. Fear for her future. Fear for the health of our future children, if any. Fear fear fear. Ironically I fear being fearful. I actually worry about the possibility of fear. Sheesh, if that isn't a vicious cycle, I don't know what is.

And then I think on the book of Job in the Bible. The guy had everything, and then God allowed everything, including his own health, to be taken from him-- just to prove his faithfulness. Even his own wife gave up on him, and God...

2:9 His wife said to him, “Are you still maintaining your integrity? Curse God and die!”
2:10 He replied, “You are talking like a foolish woman. Shall we accept good from God, and not trouble?”

I don't want to be the foolish woman. I want to accept all things from God. Both what I see as good and what I see as bad. Both can be blessings, if we are looking for His hand in it. Both offer an opportunity to trust and grow in our faith.

I've been reading the book "One Thousand Gifts", and it is extremely timely in this season of life. It's the challenge to see everything as a gift from God. All things. Seek the gift, seek the beauty; even in the broken and hurt... we can find grace, healing, hope, and beauty from our Creator. Our Father, who loves us. He turns even those darkest things into something good--if we look for it. Not to say that He is the Author of evil-- by no means! But He is the Author of our faith. And he brings about good things to completion, if we are willing to embrace with open hands what He gives us.

Like I heard just last night from a friend--
To the things we like and enjoy, shout to the Lord, "Thank you!" and have a grateful heart. And to the things we don't understand or don't like, tell God "OK", and accept in faith. Like a child who is obedient even when they don't feeeeel like it, or when they don't understand their parent's rules. We can be obedient--without fear. Out of faith, because He parents us PERFECTLY. Without flaw or fail. We can trust in His goodness wholly. We can lean on our Heavenly Father, even in the hurt and confusion... no, especially in the hurt and confusion.

"Shall we accept good from God, and not trouble?"

These are weighty, raw, and painful questions. It hurts to hurt. It hurts to see others hurt. It hurts to see others suffer, to see our own suffering. To not understand, to question God's intentions, to question His love for us, to question ourselves. But those questions and hurts can draw us to our Creator, to grace and contentment. Even in the ugly, messy, terribleness. Even in the "why's" of life.

And our daughter? Shame on me if I miss this gift. This precious beautiful gift. This messy, imperfect, break-the-mold gift. This "God is my might" little Brielle-girl, with the sun-gold hair and the sly smirky smile and the unadulterated ocean eyes. The giddy greetings and the ornery protests and the quiet contemplative soul. The white-wrinkled fingers, soft from all-day-sucking, wet with drool, patting me softly on the face. The gentle goodnight nuzzle in the crook of my neck at day's end. These are gifts. She is my gift. And I embrace it.

Saturday, January 10, 2015

A new year to persevere.

Hello, twenty fifteen!

It's hard to believe a new year has started. I'm not sure if I'm ready for it, but here it is.

Brielle turned TWO a few weeks ago on Christmas Eve. My sweet little girl has certainly had an eventful holiday season. Not like we hoped, but still hope-full.

In early December, after meeting with her new doctor, Brielle had an MRI scan that came back clear of any concerns! We are so so thankful that her brain is healthy and no major damage has been done due to seizures or otherwise. Gratefully we can check that one off the list of possibilities. 

Shortly thereafter, she was put on a low dose of anti-seizure medication to see how her body responded. Did I mention her doctor sent me a link for a prescription coupon that saved us $150? Yes, because he is awesome like that :)

After a few days, Brielle was adjusting pretty well to the meds and seemed happy and motivated to "practice" her sitting up and moving around more. It was the glimmer of hope that we needed. I told her she may as well give herself a birthday present and start walking. Ok, I knew that was a lofty goal-- but it was wonderful to see her active.

However, after a few weeks, we increased her meds again, with less-than-stellar adjustments. Brielle was, to put it bluntly, miserable. Fussy, whiney, lethargic, unmotivated... MISERABLE. We hung on for a few weeks, hoping she would start to feel better and adjust to the medication, but she never did. So, the birthday and holiday festivities were a bit rough on her, unfortunately. 

Good news is, though, we dropped her dosage back down and in just a few days have already seen her improve in her mood and motivation. I missed seeing those sweet smiles and cute little noises. I am enjoying having our little girl "back" after a daunting three weeks. Please pray we can determine what is best for her regarding medication.

So what's next? Therapy. Prayer. Waiting. Persevering.

We're holding off on a second EEG, only because she is on medication and it is less likely the EEG will show any seizure activity while on it. To be honest, I'm relieved that we don't have to subject her to that test again right now-- not to mention the travel and costs involved.

We are eager to see what the Lord will do in our daughter's life this year. We are hopeful, and cautiously optimistic. Continuing to trust in His plans for her. We know her "timeline" will look very different than most kiddos. We are learning to accept that and adjust to it. There is still a grieving process that comes with recognizing that our child is different and has special needs. But more importantly, it allows us to be free to just meet her where she is, and love her without expectation. 

Watching our son, Judah, love on his sister so uninhibited... without judgments or worries or comparisons. It's eye-opening. He adores her, gives her big hugs and kisses on the head. He tries to explain things to her to comfort her when he knows she's upset about something. He involves her when playing together, he treats her equally--despite their age and ability differences. I am learning so much from my children. God is teaching me through my children's unconditional love for one another. Lord, may I love like that.

Monday, November 17, 2014

Hope Rekindled: An update on Brielle

God is never late in answering His promises.

Some answers take a very long time, though. Much, much longer than we expect, want, or hope for.

However, I continue to see His faithfulness, even when I begin to lose faith myself. And just when I need it the very most, He swoops in to catch my heavy heart before it falls. It is true. He is a good and faithful friend to me. He is a compassionate Father that never abandons or fails. He is quick to hear us, and eager to care for our needs.

It's just not on our timeline.

I've been quiet on Socialmedialand. Intentionally quiet. Mostly because, for many months,  I have not been sure what to say. When people ask how our daughter is doing, the same daunting response fumbles from my lips: nothing new... keep praying.

I wrote a very lengthy blogpost recently about that; sharing the longing, anxious, dark moments I've felt lately regarding Brielle's health issues. But I just couldn't bear to post it. It was too close to home... too depressing. I felt myself slipping close to hopelessness.

But then, something happened.

Brielle is still Brielle, nothing has changed there. But I firmly believe the Lord orchestrated a series of events last week that is finally bringing a glimmer of hope to her situation and progress.

You see, we've been feeling abandoned. Not by God, or our family or friends (quite the opposite)... but by the medical world. Doctor after doctor, hospitals, therapists... all dead ends. Silence.
I've dealt with some anger and frustration. Feeling as if they've dropped our sweet daughter by the wayside. Why aren't they being proactive? Why aren't they doing more to help her? Do they know what's wrong but are avoiding telling me? Do they know more than they lead on? What happened to "do no harm"? Is neglecting and ignoring her needs harming her?

I didn't know what to do. I felt as if we were flatlining in what to do for her. I felt like I was flailing around in the darkness. I felt like a failure as a mother. I felt like my prayers were muted. But at the same time, I hesitated. Sure, we had her in therapy... but that hasn't seemed to make a big difference. What next?

So, we prayed.

And last Sunday, I felt an urgency to ask our pastors to pray over her (again). She had been having some mild febrile seizures quite often that week and I was just desperate. I knew going to the hospital wouldn't help. And she's seen most of the other doctors and specialists. But "riding it out" and not DOING anything about it just seemed unthinkable to me.

So we pulled aside one of our pastors, and mentioned our concerns (he also happens to be a nurse and knows Brielle's situation well). A few other friends were standing by listening. All of them, in agreement, suggested seeing Dr. Nabulsi here in Midland. Their kids all went to him and they loved him. He also seemed to have a knack for the difficult cases. However, there's a catch: his waiting list is about a YEAR long. So, we'd have to pull some strings... and pray. A lot.

Over the next 24 hours, my friends called to refer Brielle, and they also sent him a personal email, pleading for our daughter's case. Then I called to set up the appointment. They turned me down... flat. No exceptions, no mercy. I was heartbroken. I felt as if my one glimmer of hope was completely shattered. I cried. Then we prayed some more.

Then, hope rekindled: The doctor read my friend's email, and asked to call me! Within hours, he called me asking all sorts of questions, then asked for ALL Brielle's medical history and records. I spent hours compiling emails, pictures, and records to send him. Six emails actually. SIX. "Surely this is overkill," I thought. "There is no way he is going to read all this."

Two hours later (at 8pm, mind you), he's TEXTING ME asking for even MORE info! I have never ever in my life received such personal communication from a doctor. After 30 minutes of texting him answers and pictures of Brielle, he ends with. "Ok, you need to come in. Tomorrow if possible."

I was floored. God was moving, in a hurry. To have such a well-known pediatrician-- who specializes in difficult cases-- take such personal interest in our daughter... it's truly a miracle.

We went in the next day, fully expecting the receptionists to give me a difficult time or at least bombard me with questions. I said a silent prayer, "God, make a way where there is no way... I will give ALL the glory to you, if this doctor is the right one for Brielle."
...And sure enough, they just handed me my paperwork and waved me on as if I was royalty, no hesitations.

"Thank you, Lord!"

At the end of our appointment, after sharing his observations and suggestions, Dr. Nabulsi looked at me and asked, "Do you have any other questions?"

I literally felt weight lifting off my shoulders, "Actually, for once... I have more answers than questions."

I share this God-appointment with you, not to turn this doctor into our Savior. He isn't. He is just a man. But he is a man that God has placed in our path that has a gift and talent, and at the very least he has connections to those who can help even more.
But most importantly, he is compassionate, driven, and proactive. Qualities I have not often seen in our journey with Brielle (unfortunately). I expect him to follow her case until we find the right answers and get her the help she needs to thrive. I am so incredibly thankful that even though we don't have any more answers than we did two weeks ago, at least we have three important things in place now:

2) Direction, a plan of action (see below).
3) Direct support from a knowledgable doctor who is determined to walk alongside Brielle.

If you're still with me reading this, here is an update on where Brielle is now, and what we have planned in the foreseeable future for her medical care.


Reality is sinking in as we are nearing Brielle's second birthday in just a handful of weeks (Christmas Eve!). Even the thought of planning her birthday leaves me feeling anxious. When I see children her age running, talking, playing... my heart is heavy. She isn't like the rest of them.

Sometimes I fear that I will get our answer and not like it. I fear the answer could only bring on more questions and concerns. I want an answer, but I don't.
Don't get me wrong, I know it could be worse. It could always be worse. I have seen the pain of "worse" in many friends and family. I am very grateful for the gift of my daughter, her health, her cheery demeanor. I wouldn't trade her for anything. I don't take those things for granted, because we aren't promised earthly perfection, nothing in this life lasts. We must hang our hope on the promises that are eternal, in Jesus.

Brielle is now 22 months old. And I so desperately wish I could share a new milestone since the last update... but I can't. It pains me to say that.
She is severely behind, globally, in development. Grueling and painfully slow progress, if any at all. She seems to have 'stalled out' developmentally, and uninterested in, well, most anything. She is well over a year behind now. She's around the 8 month mark in almost all areas. Her muscles are very weak, and it's still hard for her to sit up, let alone the occasional "scoot".
On top of that, she continues to have mild febrile seizures (we believe they are connected to when she's teething/low-grade fever), which seem to complicate things.

We celebrate the smallest of milestones. She started helping to turn the pages during our book reading time this week. She gives us a "snuggle" every night before bed. A hint of understanding - there is definitely intelligence and even some wit and feistiness hidden in this tiny package of a girl. Every little glimmer of hope is huge.

Dr. Nabulsi believes that the seizures may actually be causing her developmental delays. He wants us to do a second EEG in Dallas (the first one was done in Lubbock when she was overnight at the hospital). He is convinced that something should have shown up on that. He also wants her to have an MRI to see what, if any, damage has been done to the brain.

If his observations are accurate, he wants her on a low-dose of anti-seizure medication for at least six months to help her body "normalize". He thinks the seizures are 'handicapping her' and not allowing her body to grow and develop like it should. Removing seizures from the equation for a while (coupled with intense therapy), he hopes will give her the boost she needs to catch up and get back on track. Although I'm not a fan of medicating my child on a daily basis... I'm also hopeful and quite relieved that this could be a fairly "easy" fix, if this is really what's causing all the problems.
Genetic testing has been set aside for now, though we will go that route if we rule out the seizure connection.

We covet your prayers, for logistics/travel for the tests, for God's provision, for our family as we juggle everything in order to care for Brielle the best way we know how. Therapy is starting to fill up our weeks, and the other appointments I'm sure will add to it. Pray for strength and endurance, and most of all, for our sweet daughter's healing and wholeness. We so desperately want to see her thrive and grow as God intended her to, whatever that looks like for her. We know He has a very special plan and purpose for her life and for us as a family.

Thank you for asking, for caring, for praying, for reminding us of His Word and promises. It's what holds us together when it gets tough.

Oh, my sweet Brielle.
I am standing on His promises. He is never late, He is ever-present, He is always faithful.

The name Brielle (derived from Gabriel) means "God is my might", or "God is my STRENGTH".
I am claiming strength, through the Lord, over her body and mind... in Jesus name.