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!

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.

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.

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.