Sunday, October 31, 2010

What's his medical history?

With each new doctor, nurse, therapist etc. etc., this is always one of the first few questions. I never really know how to answer. I feel like I could write an encyclopedia on this kids "medical history".

Ethan was born via c-section due to an "overly aged" placenta. He wasn't breathing, and had to be intubated. Thankfully it was only for about 30 seconds. At 7lbs 4oz he was a pretty skinny baby, and Eric quickly noticed something a little odd about his lower back. It turned out, Ethan has a sacral dimple. This is fairly common, and upon inspection the doctor wanted to do an ultrasound. They were looking to see if the dimple was attatched to any nerves at the bottom of his spine. Thankfully, they deemed that nothing was attatched, and the dimple was considered benign. Next, Ethan had jaundice, this was complicated by nursing issues. After about 2 weeks, the jaundice improved. Ethan also had blocked tear ducts in both of his eyes, and fairly severe cradle cap.

So, far all of his issues were fairly typical for an infant. Then, over the next few months we also learned that Ethan has an abnormally high tollerance for pain, low muscle tone, needs surgery for an undescended testicle, and is an extremely early teether. At this point, Ethan's pediatrician, lovingly deemed him her one in a million baby.
On August 31 we were lead down a path that was definitely not so typical. Ethan had 3 seizures in a matter of 15 hours. He was rushed to the hospital via ambulance, twice. Over the course of the next 5 days, Ethan experienced an EEG, MRI, spinal tap, chest x-ray, an IV in his foot and his head, 3 rounds of blood and urine tests, and an evaluation by a neurologist, and an infectious disease specialist. It turned out that he had a fairly common virus called the adenovirus. However, they needed to send blood and urine samples up to the children's hospital in Portland for more testing.

On September 17th I got "the call". Ethan's pediatrician told us the lab work had come back from the children's hospital, and that Ethan had high levels of ethylmalonic acid in his system. Since then, Ethan has seen a pediatric metabolic specialist twice. They've done more blood and urine tests, and are currently waiting for results from a skin biopsy. Ethan will likely be diagnosed with either Ethylmalonic Acidura, Gultaric Aciduria type 2, or SCAD. Ethan has taken the term unique to a whole new level. His pediatrician now lovingly deems him her one in five billion baby. The most common question we get now from friends and family is "What does this mean?" For now, it means that he'll be in therapy and take a carnitine supplement to try to help his low muscle tone, and that when he gets sick he has a high risk of being hospitalized. However, the answer to this question will be a day to day journey. I'm equally frightened and excited to learn where God is leading us. It's been quite a journey so far, and as worried as I am some days, I know that God has big plans for our little boy, and I'm quite excited to learn what they are.



  1. It sounds like you guys and little Ethan have been through so much. You have a great attitude about it all. God does have a plan and good will come of this.

  2. Thanks for following my blog! Have they determined what disorder your son has?

    Thanks so much for taking the time to tell your family's story.