Friday, November 18, 2016

Ten Days to TEN years birthday Countdown...year 4, 7 days to go!

The big stuff going on this year was Lillian's holey neck.  They had removed the trach and the hole was supposed to close on its own, but really, I just don't believe that happens.  Not for someone who's had an open hole there for three years.  So, Lillian had multiple surgical closures that just didn't hold up.  When we went in the third time for another revision, I was devastated when the ENT came out with pictures and explained that we may have to reinsert the trach tube.  Seriously, I just broke down right there in the packed full waiting room.  I remember my mom and two of our ministers were standing there with me and I think they all were holding back tears as was so so devastating.  Thankfully, we witnessed a miracle when we went back a month later to see if that was really going to happen and whatever the obstruction was had gone away and that was the final closure she had to have on her neck. By her 4th birthday, she no longer had any type of hole in her neck.

Lillian continued to be very fragile getting illnesses easily.  Our amazing new pulmonologist had a hunch regarding her constant sickness and performed some biopsies in her lungs and sinuses and we got her immunity disorder diagnosis.  Relief, yet heartbreak as there is no cure.

At the age of three, she started into developmental preschool, which caused me to be a total wreck.  Her home based therapies ceased and we started therapies in outpatient rehab and she got school related therapies in the classroom. She missed quite a bit of school due to sicknesses.

Believe it or not, we were faced with another move prior to Lillian celebrating her 4th birthday.

I'm super tired and having trouble keeping up with details at this, I'm going to leave a picture of Lillian.  We made it through decannulation and throat revision, sleep studies, and even a tiny tornado that hit the property we were living on.

Here's the post from her 4th birthday!

Her daddy bought her this notebook for being so good at the Cardiologist.

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