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

    Hello to Everyone, Paul and I brought Namine in to see Dr. Denni this past Monday to find out when she will be able to have her jaw distraction done, so we can remove the trac and g-tube. It was mostly bad news but some good news. We have to ween her faster off of […]

  • Holy Cow Where Has The Time Gone!

    Hello everyone, I am so sorry that we have not been keeping up on this. It is has been a long and fantastic ride being home. We have celebrated our very first holiday home!!!! YAY!! We almost thought that we weren’t going to be able to. She came down with a viral infection the week […]

  • Home On Monday!

    Hello Everyone, Namine is coming home on Monday, February 2nd. Great Grandpa has a great birthday present:) Namine is doing well. She has recovered surprisingly well after having this heart surgery. She is down to 30% oxygen not only on the vent but on her trac collar and doing fabulous. She is stating in the […]

  • Almost all tubes out. Also, pink!

    So Namine’s trach was put back in, making her a much happier baby. Her chest drainage tubes were also removed; her left and right arterial lines were removed, but the one in her arm is still in. They also made sure that her new G-tube is in correctly before they start feeding her. They may […]

  • Surgery Done, Recovery Begun

    Namine completed her first heart surgery, a modified Norwood.