Tag: 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.

  • Nightly roundup

    Well, kids, no new news. As far as I know, my grandpa is still in the hospital. Nothing on what might be wrong, other than a bad ear infection. As for my mother-in-law, she probably should have gone back to the ER tonight. She’s got bruises where she didn’t before, with no explanation for them, […]

  • Poopiness

    Well I don’t know where to begin.  Namine started with just more secretions and a slight fever at the beginning of the which grew to no fever, but vomiting and diarrhea like crazy.  She has had probably about 7 blowouts since Friday.  We have talked with her pulmanologist and the regular pediatrician and now the […]

  • Holy crap, an update

    Yes, kids, it’s been a while since our last update. I blame hospital visits for that one. I’m pretty sure I completely skipped updating when Namine got her distractors out. Yes, she no longer has distractors, and her plastic surgeon, Dr. Denny, proclaimed her jaw stronger than he expected. (He expected to have to leave […]

  • In the hospital again

    I haven’t really had a chance before now to post on how Namine’s doing, and for that I apologize. They just kicked me out of her room so they could do a chest x-ray, though, so I guess here’s my chance. They woke her up, and she’s pissed. As far as we could figure, things […]

  • Health update

    In case you were wondering, Namine hates shots. The other day, she got her Synagis shot (for RSV) – and at least one other, I’m pretty sure – but there was too much to give in one go. So even though the dosage was for a single shot, they gave her one in each leg. […]

  • Distracting Namine

    Namine had a doctor’s appointment earlier this week. We took her in to see Dr. Denny, her plastic surgeon, who looked at her jaw and distractors; he said she’s doing better than he expected. (We get that a lot.) He told us to keep on with the distracting process through Sunday, then to bring her […]

  • Going home today

    Hey everybody, we’re finally going home! Namine is doing a lot better this morning, and the special needs doctor has given the okay for us to leave. Namine still has a lot of secretions this morning, but the raspy sandpaper noise she was making is gone. She’s also feeling better all around. The “stranger danger” […]

  • Not home yet

    We had planned on Namine coming home yesterday, but that didn’t happen because she’s had more secretions than usual. We then hoped that Namine would come home today, but now that’s not happening, either. Namine has a potential trach and lung infection. She also has a possible C-diff infection. This is a severe bacterial infection […]

  • Today

    Namine has had quite a busy day.  She was sitting and playing and visiting with Great Grandma and Great Grandpa and watching it snow.  Namine also has hit the stage of stranger danger.  It has not been fun all day.  Everyone that has come into the room that was not family she cried and clung to […]

  • Contentedness and misery

    I am home now. The plan is to get some sleep – actual sleep in my own comfy expensive bed – before going back to the hospital tomorrow morning, then going to work. But first, an update! Because much has transpired in a single day, and it feels like we’ve been there a week. We […]

  • What time is it?

    I’ve been up all night, trying to make sure Namine doesn’t pull out her distractors. Even through the haze of drugs and wooziness of a tiring day, she still makes plain her dislike of artificial attachments. She has a fever of 102.something. I don’t know right now what they can do. Once rounds start this […]

  • Jaw distraction complete

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