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:

1) HOPE
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.

our drummer boy

I just watched Judah's "Judah's First Year" video from his time in the NICU and his progress at home. It was the first time in a long while I had watched it, and, after crying like the blubbery hormonal mother I am, was humbled at how gracious our God has been to our son these 3.5 years he has been in our family! He went from a tiny one pound squishy micro-preemie, to a growing infant who had a lot of catching up to do, to the boy he is now that doesn't even show a hint of "preemie" in him, either by physical attributes, health, or development.

Judah is now a spunky, bright, energetic little guy who loves people, has a sweet and sensitive demeanor, and just a hint of mischief! One moment he turns to me at dinner and says "thank you for making dinner mommy" (oh melt my heart!), and the next moment he's flinging potatoes with his spoon. Love that kid so (drives me crazy too!).

One thing we noticed maybe about a year ago, is his growing musical inclinations. Well, inclination might be a grand understatement. It is in his blood. I am not calling him a prodigy child by any means, but this kid has rhythm. It's in his soul, he has to be tapping, beating, beat-boxing with his mouth, wiggling and dancing, or drumming on whatever he has in front of him (drums, table, floor, himself, other people), at all times. It is physically difficult for him to stop and sit still for more than a few moments!

I may be investing in ear plugs before long...

Here's a fun little video I took about a month ago that cracks me up. Most of the time, he either sings worship songs he hears on the radio, or makes up his own words and "ewok language" to sing along while drumming (like the last part of the video)... but this time he made up a legit song about monkeys. ;)

If you need interpretation: "We go to zoo, we see monkeys, and ooooh hah hah hah, and a diggabow!"

Thankful to Jesus that I'm this boys mother! :D

Slow but steady mini-milestones: Update on Brielle

Update on our sweet girl. We are now in full swing with all sorts of therapy every week, and though it seems progress is slow, Brielle continues to gain strength and endurance and we are celebrating "little" milestones along the way. All her therapists think she is smart, engaged, and responsive and they anticipate her to do very well and make big strides to improve.

Brielle is now 19 months and just as charming and delightful as always, getting a little more vocal and a LOT more personality!

We have seen two significant mini-milestones in the last month and we are thrilled to see her attempting new things and trying to be more independent and mobile.


Milestone #1:
She has been pulling into sitting independently (when she feels like it, maybe a few times a day). She surprised me a few weeks ago when she tried to do this by herself (we had been working on this in therapy but never tried without me initiating it for her). Seemingly small but a BIG deal for this little girl! In this video, this is the first day she did it, and she even performed for the camera! Impressive :)

Milestone #2:
I would define as "scootching", or what most people might define as dragging herself across the floor, haha! Not full-fledged crawling, and certainly not consistent, but still progress!
Now, this only happens when she is reallllyyy motivated by something. And what motivates her are usually two things: FOOD, or things she shouldn't have (brother's toys, paper, specks of whatever she finds on the floor, etc.). But mostly food. This girl LOVES her food, and can easily pack away more than her 3.5 year old brother eats on any given day... two hollow legs? Possibly two hollow arms as well? ;)

I have noticed her trying to pull her knees under more, so perhaps it won't be too long until she is using her legs more than arms to crawl in the near future.


Honorary mini-milestone: First itty bitty piggy tail! I've waited 19 months for this cute baldy to have enough hair! :D

We are stillllll waitingggggg for our developmental pediatrician and geneticist appointments. Doctors and paperwork can be as slow as molasses here in Texas sometimes. We hope these visits will happen before too much longer though.

Concerning her seizures, though we can never know for sure, we suspect that they may be connected to very low-grade fevers when she's teething. She was cutting a molar the weekend she went to the ER. Her fever must have been so low it didn't even appear she had one. Two weeks after, she cut the other molar and had several shorter and less-severe seizures over a 48 hour period. At that point a lightbulb went on as I made the connection. That gives us hope that perhaps at least it's not random and we may be able to expect it and possibly prevent it in the future. Keep praying for closure and answers there. We have a follow-up appointment with the neurologist in Lubbock on August 8th (our 6th wedding anniversary!).

Then, the following week, we head to North Carolina to see Jonathan's family and our new little nephew! Very much looking forward to that visit and time together, plus, this will be our first big airliner flight as a family!

Thank you for your continued prayers, they are certainly effective and appreciated!

update on Brielle: a crazy week with a hope-filled ending

Well, what a week this has turned out to be!

What's even more amazing is that God already knew what this week would look like for us, what the outcome would be, and He paved the way ahead...

Last Tuesday, I (Charisma) had my wisdom teeth removed as scheduled (fun times, yay). Jonathan was off for the week as planned to help with the kids and give me time to recover. So thankful for his care over our family!

Saturday (June 21st) was the first day I started to feel normal enough to venture out, so we ran some errands, took the kids to the library, and had a late lunch at CiCis pizza.

At 2pm, we were waiting in line to pay for our pizza, when Brielle had her first "event". I call it that because I had witnessed similar episodes so it didn't immediately alarm me.
This past Spring, she has had a handful of what I call, "absence seizures", or "spacing out episodes", where she would kind of tense up, get a little jittery and look really focused, as if she is trying to pass gas or something. But her arms and legs would still move as normal, and she would still make eye contact. After doing some research and discussing it with her doctor, none of us were concerned about them immediately.

However, the episode last Saturday was different. She completely stiffened, including extremities. Her eyes were glossy and unable to make eye contact, her breathing slowed or stopped for about a minute, and afterwards she was so lethargic, she fell asleep. I tried to feed her because food has always been a major motivator for her (ha!), but she wanted nothing but sleep. I woke her up 15 minutes later and she ate normally and seemed herself again. I assumed because it was past nap time that maybe she was just extra tired. I'm not sure if at that point I realized that it was a more serious seizure, or if I chalked it up to just another spacing out episode.

Once we got home, the kids went down for naps, and Brielle slept for about 2.5 hours, which is normal. A little bit after I got her up, at 6pm, she had another seizure. Then at 7:45, 8:45, 10:00, and the last one sometime around midnight (after we got to the ER).

Once we realized there was a pattern and they were happening frequently, we called a local friend (who was a nurse) for advice, and while we were on the phone, she had her most severe seizure. Even though she never had convulsions, she seized long enough (maybe 1.5 minutes) that her lips starting turning purple, eyes started rolling back in her head, and for a moment got floppy and almost lost consciousness. That was a terrifying moment as I considered doing CPR and calling 911. However, she came back to us and we realized this was very serious, and if the trend continues, we may only have about 45 minutes to get to the hospital, so we immediately drove to the ER.

Now, I need to pause the story here to thank God for our church family, Sovereign Grace. Not only did we have tons of people praying for our daughter, but we had Mike & Alan show up at the ER right along with us, and people calling the ER to inform them that we were coming.
Pastor Billy not only called and checked in on us several times, but spent the majority of the night awake because of his concern for Brielle, praying for her, and at 4am SHOWED UP at the hospital to be with us and pray with us. I have never met such a compassionate and spiritually-sensitive pastor who is that in-tune to people's needs. He blessed us so much by caring so deeply during a difficult moment, and ACTING selflessly in response. Thank you Billy!

It was providential that we were in the ER on Saturday night, because by Sunday morning we probably had a dozen churches across the US praying for her during their morning services, not to mention hundreds of individuals all across the states and even internationally! We had messages coming in all weekend long offering help, including quite a few who offered to take care of our son while we were with Brielle.

Brielle was a champ, enduring the countless nurses and doctors poking and prodding her all weekend. While at the ER, she had a CT Scan and blood tests. Exhausting their resources, they felt she should get transferred to a children's hospital in Lubbock, that also had a neurologist.

I (Charisma) rode with Brielle in the Ambulance transferring service while Jonathan went back home to be with Judah and give him some stability and normalcy for a while. We figured there wasn't much use in both of us sitting in a hospital for possibly days, unless an emergency arose and then of course he would come up. And we didn't want our son bouncing from house to house not knowing where his parents were.

---
Side Note:
Now both my son and daughter have exciting stories to tell about their hospital stays! I was life flighted by helicopter just hours before Judah was born, now Brielle has her own story about riding in an ambulance! (We had the option of taking a jet, but didn't feel the urgency to go that route.)
---

At the hospital, Brielle had another round of bloodwork, an EEG (both 1 hour and overnight), and EKG. Every single test came back negative... she is the healthiest 'sick' little girl I know, apparently ;)

No more seizures to speak of (almost a week later), and she has been her normal sweet self, which we are so grateful for. We don't have the answers yet, but we are thankful to God for...

- the caring and thoroughness of the staff at both hospitals, and the ambulance team
- the timing of Jonathan already being off work for the week, and his boss who did his best to try and get him an extra day off
- that I was mostly recovered from my wisdom teeth surgery, and able to be with Brielle and take care of her
- everyone's prayers, and those that went out of their way to help us in practical ways, like watching Judah, money, food, encouragement, visiting at the hospital, etc.


So remember how I told you that God was paving the way? Aside from things already mentioned about the timing... would you believe that He also orchestrated the financial side of it? And His care for Brielle's other developmental needs?


When Jonathan checked the mail on Monday (Brielle and I were still in Lubbock), there was a completely unexpected check for a significant amount in there from a family member. It was sent "just because", before Brielle's first seizure had even occurred! THAT, my friends, is how God cares for His children (and possibly shows off a little ;)

Also, another providential blessing... had Brielle not had those seizures, it may have been months (if ever) before we would see a neurologist or any specialized doctors for her developmental delays. Dare I say, I am thankful she had the seizures (though I certainly wouldn't want her to have another!), if that means we now may find out the cause of her other problems! Whether or not the seizures are related, we don't know... but we are now connected to doctors that might be able to find the answers, or at least a hopeful direction.

What's to come is still unclear. She has been given a clean bill of health, though there's always a chance she could have another seizure because we just don't know. Praise God, though, that she is considered low risk for repeat seizures and does NOT need to be on any medication!

Right now, we are pursuing genetic testing. We also will be making appointments with a developmental pediatrician here in town, as well as a follow up with the neurologist in Lubbock.

Keep praying! This sweet girl has stolen our hearts (and the hearts of all her doctors and nurses I might add)! She is a precious gift from God that we do not take for granted. It certainly isn't fun to be venturing down this unknown road with her, trying to find ways to help her thrive and grow and develop the way she should, but we are thankful for health, life, and a sweet spirit in her. I know she's in good hands... because they are HIS hands.