Sadbh was up and ready for action at half past six
this morning. I met her as she was about to head up the stairs and was able to
persuade her to have breakfast first before going up to wake Mommy and Cillian
up.
She was in a wonderful mood and was actually excited
to be going to see Dr. Inglis today.
After breakfast she put on a performance for Mommy
and sang a couple of songs that she made up. It was great to hear her voice so
loud and Katie recorded it to show Dr. Inglis.
The doctor visit went well and Dr. Inglis agreed that
there was slight improvement since the last visit. He does not think there is
significant improvements and certainly not enough to decannulate any time soon.
He went over a few options and recommended that we schedule a sleep study so
they can record her sats while she sleeps with her trach capped for the night.
This will get us closer to choosing our next steps
and we hope to get this scheduled within the next few months.
The other options would potentially further compromise
her voice and this is not a direction we wish to take at this time.
Before leaving, Dr. Inglis performed a flexscope on
Sadbh and even though she tried her hardest to allow him, it proved to be too
painful and she did her best to fight him off. It was hard to watch her suffer
and Dr. Inglis did his best to be as gentle as possible. He was not able to see
her vocal cords but he was satisfied with what he saw and this reinforced his
recommendation to go with the sleep study.
During the visit Sadbh told Dr. Inglis that last
night Granddad pretended to be Dr. Inglis while practicing to perform a
flexscope on her.
We also discussed procedures to “rewire” the nerves
that serve her vocal cords, however this process is not common on patients as
young as Sadbh and they are still in experimental phases.
When we arrived home Sadbh, Cillian, Nana and
Granddad went out for a walk up Nora’s Woods and onto the park in Madrona. It
was a beautiful day and Sadbh got to play in the park for a while.
Sadbh’s gift arrived when she was out so she was in
for a big surprise when she got home. It was a truck and horse trailer for her
toy horses and she could not put it down for the rest of the evening.
By dinner Sadbh was starting to act out again. She’s
gotten into the habit of hitting when she does not get her way and after a nice
long chat with Mommy she came out and apologized to Granddad and myself. The
early mornings and outbursts are traits of adjusting to having a new addition
in the house.
For the rest of the evening Sadbh was in a much better
mood and when it came time for bed she read a book to her new favorite doll and
fell asleep very quickly.
All
the best,
Wayne, Katie, Sadbh and Cillian.
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