femoral facial syndrome

Femoral-Facial Syndrome is a rare disorder characterized by underdeveloped thigh bones (femurs) and unusual facial characteristics. It presents with a very broad range and variety of symptoms. Namine’s diagnosis of this disorder includes her Caudal Regression Syndrome, Pierre Robin Sequence, and Double Inlet Left Ventricle Heart Defect.

  • Jaw distraction complete

    Namine’s jaw distraction surgery is done and she’s doing well!

  • Surgocalypse Now

    After a hard morning, Namine is in surgery now. Waiting and not knowing is always hard.

  • Clinic Visit

    Good news from the plastic surgeon, plus more excitement than we planned for.

  • Namine is in the PICU

    I know lots of people are waiting with bated breath on how Namine is doing, and I can’t type any faster. Jessica and I were going to see how Namine did today, and perhaps take her in this evening if we felt she wasn’t doing much or any better. Well, that was this morning. But […]

  • I made Namine throw up today

    It was not purposeful, believe me. Namine, as I’ve posted recently, has had a lot more secretions lately, and we weren’t sure why. She’s been on an antibiotic for roughly a week now, but that doesn’t seem to be helping. Namine started to gag this evening during one of many suctionings (is that even a […]

  • Sick girls

    So we got back from the Aurora Urgent Care clinic around 6-ish. Jessica has been feeling unwell – that’s putting it mildly. She’s been feeling nauseous and occasionally, sometimes more than occasionally, throwing up. So we went to the Urgent Care clinic, and found that it’s most likely her gall bladder. The clinic doctor gave […]

  • Jaw distraction on Dec 1

    The post title says it all. As we said before, Namine’s jaw distraction would occur sometime last this year or early next year. But Jessica got a call today from Children’s Hospital that they would do Namine’s distraction on December 1 of this year. Needless to say (but I’m going to say it anyway), we’re […]

  • Visiting the plastic surgeon

    Today Jessica took Namine to see Dr. Denny, the plastic surgeon. After the results of the sleep study, CT scan, and bronchoscopy, he said that she’s a good candidate for having a jaw distraction. We know she’s doing well, but it’s still reassuring to hear a doctor say it. Namine will be scheduled for the […]

  • Sunday school and volleyball

    It’s been a full day. Kinda hard to believe that it’s already 4 in the pm, actually. The day flew by! This morning was the first Jesus Cares meeting of the season (school year? whatever). We were late, but that’s okay. Considering all the equipment we have, I’d say we’re a little entitled. ;) Of […]

  • Bronchoscopy

    Today, kids, Namine had her bronchoscopy. According to Wikipedia (since everything on the Internet must be true), a bronchoscopy is “a technique of visualizing the inside of the airways for diagnostic and therapeutic purposes.” Sounds good to me. The purpose of this, as it relates to The Feisty One, was to determine if she needs […]

  • Tests, naps, and road trips, oh my

    Welcome to our new virtual home on the interwebs, eichefam.net. Since is the new family website, this’ll be home to more than just Namine’s blog, but not to worry! Just click on Namine’s name under the categories there on the right. Or just go to eichefam.net/namine and you’re all set. I hope everybody enjoyed their holiday […]

  • Finally:)

    Sorry everyone for not posting more often.  It has been quite a hectic past couple of months.  Namine has been home since March and doing great.  We spent two days in the hospital for heart monitoring and they called it equipmentitis.  She has been stating in the low 90’s to even 100% O2 stats at […]