Sadbh was awake and holding Jirapa’s hand this
morning when I popped in at quarter past seven. She woke up fifteen minutes
earlier after a good night sleep and thankfully she was in an excellent mood.
She had a good start to the day and devoured her
breakfast just before Mommy and Cillian arrived on the scene.
Once Sadbh was dressed it was time for home school
and today Katie was the substitute teacher.
At one point Sadbh was kissing Cillian’s head when
she noticed that he has cradle cap. She asked what it was and when I arrived on
the scene she explained to me that Cillian had cradle crap. Very funny!
Since the nursing agency has dropped the ball and has
left us without a nurse this weekend we decided to speed up our plan to
eventually get rid of the nurses altogether. On Friday, after Jirapa’s shift
ends, we will move all of Sadbh’s medical equipment upstairs to the small room
next to ours. Our plan is to see how it goes with Sadbh sleeping by herself a
room away from us.
With this in mind we headed out today to buy Sadbh’s
first proper big girl bed. We started off with the mattress first and if it
works out we will then buy her a bed frame to go with it.
By the time we had gotten the mattress, sheets and
other bedding items Sadbh was very tired. She snoozed on the way home and it
took a while for her to wake up once we arrived home.
Once awake she was full of energy again and after
dinner she got to chat with Ali-Baba over Face Time.
Katie and I managed trach care just before Sadbh went
to bed and it was a little stressful since Cillian was awake and screaming his
little head off.
At bedtime Sadbh had worked up some secretions in her trach and she was fascinated with the sounds it made. She declared that it sounded like a motorcycle and she ran around the house pretending to be riding a motorbike.
Back in 2013 we had to fight Sadbh’s insurance
company three times. The first of those battles required four appeals before we
succeeded.
We were fortunate to avail of the services of a
wonderful and caring attorney who supported us through all the appeals without
charging us a penny.
This attorney and a team of her colleagues are
meeting the Washington State lawmakers on Friday to try to pass legislation to
reform the Independent Review Organization (IRO) process in Washington State.
This legislation would ensure that IRO decisions are made public so others can
benefit from successful IRO decisions. It will also strengthen the regulators
ability to review the decisions and identify systemic problems.
We were asked to testify in support of the
legislation and share our experiences with the IRO process. Unfortunately, we
will be unable to testify in person on Friday however we were able to submit or
testimony in writing and hopefully this team of attorneys will be successful in
their efforts.
After we won the IRO decision in 2013 we gave our consent
for the IRO decision to be shared for the benefit of other similar cases.
We learned today that this has been used many times
and has helped other cases win as well.
All
the best,
Wayne, Katie, Sadbh and Cillian
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