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