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.


  1. thank you for sharing, Charisma. we are praying for Brielle!

  2. Love to you. I can't imagine walking your road. I've been let down by the medical community as well, but for myself, not my child. YAY for a doctor who seems to care. I will be praying for you and Brielle as I think of you. Sounds like these are tough days. Hang in there!

  3. Oh wow. What a tough journey you are on. Praying for you.

  4. So thankful for the glimmer of hope. We will continue to pray for more answers and guidance as you continue to walk through this.