Sadbh
did just over 5 hours with her trach capped however she did not want to wear it
after she woke up. I had to talk her into wearing it as I knew she could have.
As soon as she was up and running she was fine with the cap and had no problems
breathing.
We
had a fun day and after arts and crafts we loaded up the red wagon and headed
out for a very long walk. Sadbh wasn’t sure about the weather so she bundled up
with a hat, snow gloves and her big heavy rain jacket as if it was the middle
of winter. She jumped into the wagon, buckled up her seatbelt and waited until
I was ready to haul her off up to Madrona and beyond. She occasionally called
out for me to “giddy up” especially when climbing steep hills.
At
one point we passed a house that was playing Bjork’s song “Jóga” really loudly.
As we passed Sadbh told me that she really likes this song.
Sadbh
was delighted when we finally arrived at the playground in Madrona. She spent
the next hour jumping from one jungle gym to another and she had a fantastic
time.
On
our way home she insisted on going to Nora’s Wood. When we arrived she took off
running up into the woods and had me running after her while pulling the wagon
full of all her equipment. It was quite the workout.
The
rest of our day was spent playing and reading books and after dinner Katie and
I took care of trach care.
By
now Sadbh was very tired so bedtime was very easy.
Our
most recent appeal for nursing coverage has been denied by Katie’s insurance so
we are now in the process of filing an external appeal. Just like the external
appeal we had to deal with last year with my insurance company we are expecting
a serious amount of paperwork and a lot of stress. Roll on the good times!
All
the best,
Wayne,
Katie and Sadbh.
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