Wednesday, November 16, 2016

Ten days to 10 years Countdown, Year 2 2008---9 more days!!!

I think the most memorable part of aging from one to two was the flood.  Quite literally, we had to emergency evacuate our home to higher ground.  I had to carry Lillian, trach and all, through waist high deep flood water to get to a safe place.  That was a terrifying walk.  The flood, in turn, caused a need to move immediately from our current home to somewhere new.  More stress. But we got through all of that and settled into a new rental property.

At this point, little had changed for Lillian medically.  During this particular year, I said goodbye permanently to nursing care in our home.  

We were continuing to try to find answers to Lillian's difficulty with constipation and gas.  At this point we also opted to go to the use of a feeding pump due to the continued difficulties with her feeding intolerance.  I was no longer pumping for her and was desperate to try anything that might help her to retain her formula feedings.

As I recall, she was still unable to eat or drink anything by mouth, although we occasionally allowed her to take sips.

Lillian  had learned to sit up barely assisted by age one.  We continued to have home based therapies routinely in our home.  

By the age of two she was no longer on blood pressure medications, prophylactic antibiotics, reglan, or any meds as I recall.  I was sure happy to say goodbye to all those things. 

She was still monitored closely by multiple disciplines of doctors.  Almost every specialist minus neurology.  The appointments never seemed to end.  

That year also found us mourning the death of both my grandfather who had suffered long with illness.

My two children above Lillian were really suffering in school, which was hard.  I just had a break down during my fourth child's parent teacher conference.  

That year, I met one of my people. I was volunteering at the kid's school and met her.  Someone struggling that same but different as us.  She was a teacher at the school and our journeys brought us together and it was lifesaving for me to talk to someone else who got it.  I over heard her conversation to someone else and it turned out we had the same PT working with our girls in our homes. My friend, that teacher, moved away, but she is but a text, email, facebook message  away.  

Life got super intense with Lillian following her second birthday. But hey, year two...we made it.  A second birthday to celebrate and that was joyous!

No comments:

Post a Comment