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!
((♥))

MRI Results (facebook update #2- June 21, 2013)

We received Marleigh's MRI results yesterday morning (June 20). They discovered a Chiari Malformation (brain tissue protruding into the spine) as well as a large syrinx (fluid-filled cavity in the spine). The Chiari is the cause of her scoliosis, and most likely the syrinx as well. We have an appointment July 3rd with a neurosurgeon at Cook Children's downtown. Treatment for this is usually brain surgery.

As much as we want to hide under a rock with her and pretend this isn't happening, the world keeps on spinning; life doesn't pause to allow you time to grieve. Very weird experience trying to process these new emotions and keep up with the everyday chaos of a family of five. Just want to thank you all so very much for your love and support through all of this. It really means the world to us.

Photo from MRI on June 18. She was super nervous- until they gave her the "goofy juice!" 

She handled it all wonderfully, and afterwards chowed down on some bean & cheese nachos and ice cream from Abuelo's mexican resturant ;)

Diagnosing Scoliosis (original facebook post- June 13, 2013)

On May 14, 2013 Marleigh was diagnosed with scoliosis. We've been on a roller-coaster of emotions these last 4 weeks, and quite torn on how much of this information we would share with the world. We've decided it could be beneficial to everyone, especially us, to include our friends and family on this journey.

X-rays showed a leftward 38 degree curve in the upper (thoracic) portion of her spine. Being diagnosed with scoliosis at this age is rare, but the direction and location of her curvature are even more rare and increase her chances of having underlying conditions causing the scoli. She has an appointment for a spinal MRI under sedation scheduled for Tuesday June 18th. They'll check for things like tumors, brain malformations, spinal abnormalities, etc.
June happens to be Scoliosis Awareness Month, and as we anxiously (and nervously!) await her MRI this seemed like a great time to let everyone know what's going on. While this journey will most certainly shape her, even limit her at times, it will not define her.