Sadbh had a great night sleep but
woke up crying and rubbing her jaw around 5:30. She was very upset and ended up
building up a lot of secretions. We think she might have more teeth coming in.
Larissa suctioned her trach and after
a little comfort, Sadbh dropped back to sleep for another hour and a half.
We are having the house painted today
and despite using zero VOC paint we thought it would be best for Sadbh to spend
the day at Ali-Baba’s house in Ballard.
Sadbh was delighted to be going for a
drive so early in the day and she was over the moon when she arrived at
Ali-Baba’s house.
She had breakfast at Ali-Baba’s house
and afterwards Sadbh, Nini, Ali-Baba and Molly all headed out for a walk down to
the Ballard Locks
Next to the Ballard Locks there is a
salmon ladder and within that there is an observation room. Sadbh got to see
lots of salmon heading up river and she could not stop making the baby sign for
fish.
Eventually she got tired so everyone
headed back to Ali-Baba’s place for trach care.
Everything went really well and Sadbh
slept for 45 minutes.
Once she was awake, it was time for
lunch and a chance to try out her Passy Muir Valve.
She tolerated it well for about 15
minutes or so, but soon got bored with it and started to pull it off. After a
few attempts, Nini and Molly decided that she had enough so they replaced the
PMV with her artificial nose and they all headed out again for another nice
long walk to the Locks and the fish ladder.
Sadbh was very tired by the time I
arrived after work and she fell asleep very quickly once in the car for the
trip home.
After Katie arrived home, we decided
to try out the PMV again and even though she was still very cranky and tired.
She did great and made a lot of sweet sounds. She decided that she had enough
after ten minutes, so we replaced the PMV with her artificial nose and it was
time for dinner.
Katie e-mailed Dr. Inglis yesterday
to share the latest news and one of the videos. He was delighted to hear that
Sadbh was tolerating the PMV without it causing her any distress and asked us
to keep using it as often as we can.
He indicated that it can help simplify all the other things we may be
trying in the future.
He also mentioned that in light of
this development, he will try capping her trach during our next visit on the 31st
to see how well she does.
In the meantime, it’s so amazing to
hear her sweet voice.
All the best,
Wayne, Katie and Sadbh.
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