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  • Breathing easier

    Namine had a pulmonology appointment the other day. She came away with good news: she can now start to be weaned off her inhalers.

  • From vacation to decannulation

    It’s always hard to get back into the swing of the daily routine after a vacation, even a small one like a 3-day weekend. (Of course, the nature of Namine’s condition and medication needs still require a semblance of routine, even on vacation. But it was still nice to relax and to be able to do things at our own pace.) Especially when you have to get up early the next morning for an early clinic visit. But this one is well worth the lost sleep: a trach/vent clinic, but not just any – today we start down the road for Namine’s decannulation.

  • 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 […]

  • 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 […]

  • 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 […]