Wednesday, November 16, 2016

Ten days to 10 Years Countdown Year 3 2009---8 more days!

Lillian experiencedher first seizure on Christmas Eve 2008, just a month after her second birthday.

2009 found us spending much of the winter months in and out of the hospital. She had 4 hospitalizations with severe respiratory viruses and pneumonia with a collapsed lung.  These illnesses occurred back to back with 10 day hospital stays every two weeks from end of December 2008 thru April 2009. Each illness found her close to being ventilated again each time and another surgery requiring a chest tube placement.  

Lillian finally met the criteria to have her palate repaired and then the trach could be removed but due to repeat tracheitis the doctors would not move forward with anything.

I could not get support from her pulmonogists and it seemed they didn't mind Lillian getting sick repeatedly and were willing to put her through another possibly devastating winter.  It was at this point that I removed her from the care of our local children's hospital and pursued care in Kentucky.

Lillian underwent her first cleft palate repair.( with new doctors)  What a dreadful surgery that was.  She never does things easy and we found that out rapidly.

That year also found us mourning the death of  my dad's mother.  The same week as the much anticipated palate repair surgery. The funeral was actually the same day as the scheduled surgery.  With my dad's insistence, we continued with the planned surgery.

My two children above Lillian were really suffering in school, but thanks to their awesome teachers, they saw a lot of growth in that school year.  

Lillian also learned to walk shortly after the age of 2.

We now had 4 disciplines coming into our home multiple times a week for various therapies.

With new physicians being added quite quickly, it was just before the age of three, I think, that Lillian's trach came out.

I felt I was barely keeping my head above the waters, but what can you do...sink or swim?  So I kept swimming...sinking just not an option.

We also experienced yet another move.  Pushing us further south than we'd ever thought we'd  move. We had a great deal of struggle as we prepared the home to be habital for Lillian.  We settled in and started treading water with a child who now just had a whole in the neck.

We celebrated THREE!!!

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