Facebook Post from August 13, 2014

One year ago today we sent our first baby off to have brain surgery. It was, by far, the most terrifying and difficult experience of my life. Being the amazing little fireball that she is though, she quickly turned our fear and worry into joyous gratitude as we watched her recover with flying colors.

We've posted the smiling photos. The happy, hopeful moments. I clung to those moments because they kept me strong. Now a year later I can share the tough photos. Marleigh is so proud of her story and her scar; she eagerly shows off the incision mark on the back of her head to anyone that wants to see it and happily explains to new friends on the playground that she's had brain surgery and has to play gently. Watching her go through the tough moments and barely blink an eye, to go through stress and pain and the unknown and not let it phase her... that's how I learned to allow these "tough" times to strengthen me rather than tear me down. 

She's truly an incredible little woman. 

  

 Ninny, PawPaw, and mommy with Marleigh in PICU following surgery.

Marleigh in the Pediatric Intensive Care Unit following surgery.

Many people assume that her surgery "fixed" her and was the end of her Chiari journey. Sadly, there is no cure for Chiari and the surgery is only to improve symptoms. Her journey is just beginning, as she will live with Chiari for the rest of her life. But seeing her grace and strength over the last year gives me absolute peace that she will handle it all beautifully.

Marleigh's incision 24 hours after surgery. 

"And though she be but little, she is FIERCE."

- Shakespeare

Facebook Post from July 25, 2014

Jared and I are being hit hard with a heavy realization: Marleigh's condition is going to affect the rest of her life. Furthermore, most people don't even know of Chairi, let alone understand it... including an upsetting amount of the "medical" world. 

The heat of the summer brought to light new symptoms she deals with; symptoms her own neurosurgeon's office deemed "not Chiari-related" over the phone. Why? Because they're not "textbook" and while a phenomenal surgeon, he's not a Chiari expert. No neurosurgeon in Texas is. Sadly, very few around the world are considered specialists that actively and passionately research Chairi. Meanwhile, I'm finding countless other Chiarians that experience these same symptoms. It feels like the medical world is in the dark ages regarding Chiari and it's related conditions.

I am reading countless stories online of people going into the ER due to the severity of their pain and the medical staff doesn't even know what Chairi is. So many others that are made to feel like drama queens and hypochondriacs because of their "endless" symptoms. Humans losing hope because people don't understand them and don't make an effort to sympathize with them.

This isn't okay. Not for them. Sure as hell not for my own children. Its not okay for anyone.

As we prepare to send Marleigh to school for the first time in her life, we're writing up a 504 Plan. She will have to be treated differently than the other children for her own safety. For the rest of her life. That scares me. There will be countless children and adults alike that don't understand anything she's going through. Many that won't understand why she's fatigued, or sensitive, or can't do the things a "normal" child can do... because she looks normal, right? And that's the thing, people are judged for the way they look. We place assumptions on everyone we meet- spiritual assumptions, medical, emotional, financial, physical. That hinders us from relating to them, from understanding them, from sympathizing with them. Wouldn't it be beautiful if we taught ourselves to get to know each other with an open mind and an open heart? To embrace differences rather than fear them?

Chiari makes Marleigh different. If you've read this far, I'm sure you care about her on some level. I urge you to read about Chiari. Learn what it is and what it means for her. The more awareness that is spread, the more understanding there is in the world for Chiarians. More understanding means more hope. 

There's a blog post brewing in me about all of this... if I ever actually take the time to write it ;)

Below are some links to helpful information regarding Chiari Malformation and it's related conditions:

www.conquerchiari.org

www.csfinfo.org

www.asap.org

Overdue Update (or lack thereof)

I've been seriously slacking in keeping the blog updated.

Marleigh's surgery came and went, and for some reason I just can't bring myself to fully process everything.

I want to make a thorough post to do the entire decompression surgery justice; it was the biggest experience of our lives thus far. I think in the back of my mind though, I'm aware that once we officially "move past" the surgery then we have to face everything else waiting to be dealt with. Marleigh's syrinx and scoliosis. Jack's scoli, brain herniation, and the plethora of symptoms associated. Harper possibly having scoliosis and who knows what causing it.

Not quite ready to move back into the appointments, and testing, and worry. It's been nice getting a break these last three weeks. Time has been nearly non-existant, allowing us to focus entirely on the present and revel in every single milestone Mar has reached post-op.

Eventually I'll have to step out of this magical happy bubble and back into reality.
Until then, this will have to do:

- Jack has his first appointment with our neurosurgeon on September 6th.
- Marleigh goes to get fitted for her first scoliosis brace on September 6th.
- Harper is pending an appointment with her pediatrician to have a scoliosis screening.

One more day in the happy bubble. Friday, it's go time ;)

MRI, Results, & THE Surgery Date

Today was a big day.

Jack went back for his MRI around 11:50a and Marleigh had a meeting with her neurosurgeon at 12:30p. Thankfully both appointments were at Cook Children's downtown and we had the help of family to allow us to be both places at once ;)

Jack handled the whole thing wonderfully. He stayed admirably sane throughout the day considering fasting is needed for a procedure under general anesthesia and  he's a little dude that requires sustenance immediately after waking up to function properly. All in all it was about 19 hours from the time he ate before bed yesterday to the time he finally ate after the MRI this afternoon. Very proud of him. 

At Marleigh's appointment we discussed all of her test results with the neurosurgeon. Everything came back close enough to "normal" and he gave the green light for Chiari decompression surgery. He went into great detail describing the entire procedure to us, and somehow Jared and I got through the "risks of surgery" speech without throwing up and/or passing out... though I swear at one point the room started spinning.
We chose his earliest available date: Tuesday August 13th at 9:30a.

Not long after getting home for the afternoon, we got a call from the pediatrician's office. They already had the results back from Jack's MRI. They said while he doesn't have a Chiari Malformation similar to Marleigh's, the test did show abnormalities they're concerned about. The nurse said it's called Cerebellar Ectopia. She couldn't really answer any of my questions, but from what I gather online it's like a mild version of Chiari where the cerebellar tonsils sit lower in the skull than normal- but not low enough to be considered Chiari. Very confusing. He's being referred to Marleigh's neurosurgeon for further treatment. 
Hopefully we'll get more answers then and understand what this means for our little man.

Waiting room video gamin'.

Waking up.

Jack begins his journey

Jack has always been very courageous. And he usually faces a big encounter with a quick smile and a giggle. He has a soft, round face, and dirty blond hair that movie stars would envy. We've  been letting it grow out lately, so it hangs in his eyes and sweeps to the left side of his face. He is a very tough guy but a huge momma's boy. He wears a big heart on his sleeve. But it's a sweet heart. His love language is definitely affection and physical contact. He is a good man. I think he will grow up to be a wonderful man.

I'm confident he will make it through the difficulties that lie ahead of him, but he will need support in a big way. Lauren is a fantastic mother, and i think she will play the biggest role in his ability to make it through these challenges that face him.

Jack's MRI is July 31. 

Here are a few photos of the beginning of Jack's medical challenges.

He didn't feel like flying...so we took the elevator. 

Signed in.

Getting X-rays. 

First Official Blog Post & Excessive Rambling

After meeting with genetics on the 17th we still have no definitive answers and we're still headed for more testing. In fact, I think I'm more confused now than before the appointment.

The geneticist doesn't think that there is a connective tissue disease causing Marleigh's medical troubles. This should be phenomenal news, only I don't feel that the exam was very thorough; I just don't feel confident in the news we got. 
She strongly believes Jared has a Chiari Malformation based on his symptoms for the last 10 years as well as a family history with it. She also found scoliosis in me. Her theory is that Jared passed on the Chiari and I passed on the scoliosis.

Time will tell.

We still haven't received Marleigh's blood results and no one can seem to give us a solid answer about the vascular issue in her neck. We still don't know what exactly it is, what it means for her health, and if it will require treatment. The geneticist was concerned enough about it though after seeing the ultrasound results to order an echocardiogram of her heart to check there for any vein/vessel abnormalities. That's scheduled for Tuesday July 23.

Meanwhile, Jack got his xray results back. He has a long 18 degree curve that stretches from the upper (thoracic) area of his spine, down into the lower (lumbar). His pediatrician confirmed what we already know: you just don't see scoliosis in a child his age unless something is causing it. Because of everything going on with Marleigh, the pediatrician wants to get the ball rolling with Jack and has ordered an MRI under anesthesia before referring him to an orthopedic surgeon. He feels that more than likely we'll find something in the MRI and need to get Jack into the neurosurgeon as well, so we're skipping the middle man and going straight to the important testing. Great news. His MRI is scheduled for Wednesday July 31. Quite far away for my liking, but as a friend of mine put it, "There's regular time, and then there's medical time." I am learning quickly that the pace of the medical world is a bit slower than real life, which unfortunately means a lot of waiting and worrying. 

So now, we wait for the next round of tests. We also schedule Jared's MRI to check for Chiari. 

 Jack and I playing (gently ;)) while we wait to get his x-rays.

My sweet little love HATING getting her bloodwork done at the hematologist's office.

It amazes me how quickly all of this happened. Not even two months ago we had no knowledge of any of this. Looking back, it seemed like we didn't have a care in the world. Things that were a big deal then are absolutely miniscule now. Fighting to get three kids down at a reasonable bedtime. Not wanting to go to the grocery store. Trying to cook a dinner that all 5 of us would willingly eat. Vacuuming the living room for the third time in one day. I feel foolish and selfish for thinking life was hard before this. I was definitely taking the beauty and simplicity of our lives for granted. Now our lives consist of specialists, doctors, surgeons. Waiting. Appointments, traveling, testing. Waiting. Researching. Worrying-- about everything. Obviously about the health of my sweet babies, but also about babysitters, money, bills, running out of paid vacation time at work, how to tell the kids we have to take down the trampoline in the backyard, their feelings being hurt when we drive by the playground or they're invited to a birthday party with bounce houses, how to handle school starting this fall with interference of medical treatment... about how their lives, their futures might be changed from all of this. 
When my pity party really kicks in high gear, I am always humbled. Quickly. 
We'll be walking into a new office for a test or an appointment and I'll see a child in a wheelchair, barely even aware of what's going on around him. His parents are eyeing me and my kids, who are decked out in superhero/princess gear and animatedly fighting each other. They're giving me that look I've become familiar with. "I wish that were us. You have no idea how easy you have it. I miss normal." I know this look, because I've begun to give it myself every time we drive by a park, or see a family riding their bikes together, or I see friends on fb posting about their exciting summer adventures. 
Seeing this child and his weathered parents makes me want to weep. I'm just like I was two months ago thinking whatever problems currently staring me in the face are the worst ones in the world. I'm still missing the beauty and simplicity of our lives. My children may be facing brain surgery, spinal fusion surgeries, and whatever else this journey throws at us. But they're still vibrant, unique, gorgeous souls... and they're here, you know? They're here and they're mine.
Things could always be better, and they could always be worse. Dwelling on either takes the beauty out of the moment. I'm trying to consistently remain grateful for what we have, to not waste useful energy worrying over what we don't, and to not let fear get me so paralyzed that all of these things become forgotten.

{Recent moments}

Took the two big kids to see Despicable Me 2. Fantastic time!

♥

Water balloon fun!

Ice cream dance ;D

Facebook Update #3- July 11, 2013

We met with Marleigh's neurosurgeon on July 3. There we discovered her syrinx (fluid-filled cavity in the spine) is very severe, taking up the entire length of her spine. Because of the pressure the fluid is placing on her spinal cord she is on major physical restriction as a back injury could be "catastrophic."

Due to the severity of her syrinx the doctor wants to do decompression surgery for the Chiari as soon as possible. This involves removing a portion of the skull as well as a spinal vertebra to relieve the pressure on the Chiari. Normally fluid would flow from the brain, down around the spinal cord, but her Chiari is blocking the natural flow and forcing fluid down into her spine (syrinx). Hopes are that the surgery will allow fluid to flow freely again and over time her body will absorb the syrinx.

We're eager to get this surgery done, but we've hit a few bumps in the road. The neurosurgeon discovered a vascular malformation in her neck. This could change the way he performs the decompression surgery so it needs to be assessed. She had an ultrasound on it yesterday; results still pending. Tuesday we met with a hematologist for extensive blood tests to check her clotting, etc, as the surgeon is concerned with Mar's easy bruising. He also suspects she has a tethered cord. All of these issues combined have us headed to a geneticist on the 17th to check for connective tissue disorders. I'll wait to go into detail about what that diagnoses would mean for our family IF she ends up having it.

Finally, we have now noticed scoliosis in Jack. Yesterday his pediatrician ordered x-rays of his spine. The neurosurgeon said there is about a 15% chance for Jack or Harper to have a Chiari Malformation as well and currently... that's my greatest hope. I pray with everything I am that Mar and Jack just happen to both have Chiari, can be treated with brain surgery, and we can put all of this behind us. I pray with everything I am that my precious babies DON'T have a connective tissue disease that is wreaking havoc on their little bodies.

I am finding that waiting and worrying is the hardest part of all this.

As ALWAYS thank you TREMENDOUSLY for your continued concern, support, and uplifting love. While this has been terrifying, I am also seeing so much beauty come from this journey as well. The ability to be more in the moment, especially with my children. A deeper appreciation for all the little things that usually go unnoticed. The unbelievable compassion and depth of love from a great many people in our lives-- some longtime friends, some acquaintances, some even strangers.
So much gratitude!
((♥))