Sadbh had a wonderful night sleep and
only woke up once at 1am for a very quick feed. She did not really wake up
fully and was back to sleep within 20 minutes.
She finally woke up at 6:45 and was
ready for a big breakfast.
Sadbh had her follow up appointment
with Dr. Inglis today to check out how her Botox treatment.
Even though her appointment was in
the early afternoon, we all had a very early start to the day.
Molly arrived at 7:30am and Sadbh was
eager to get the fun and games started.
The weather was very nice, so Nini,
Molly and Sadbh headed out for a coffee and then on to Trader Joes to pick up
some groceries.
Sadbh was flirting like crazy with
people as they went by and even met with two babies her own age.
Eventually the excitement got the
better of her and she fell asleep.
Sadbh’s first appointment at
Children’s was with her Occupational and Physical Therapist Robin.
She was very impressed with Sadbh’s
development and gave us lots of advise on next steps.
Her next appointment was with Dr.
Inglis and his team. They were almost an hour late, so we had to reschedule
Sadbh’s 2:30pm appointment with Caryn, her speech therapist.
The meeting with Dr. Inglis confirmed
our suspicions that there was no significant improvement since she received her
Botox injections. We did learn that it could be a result of granuloma build up
rather than the Botox not working. We scheduled a follow up appointment in July
so he can carry out a flexscope to see how her vocal cords are working and to
discuss if we want to consider additional Botox treatments.
We also scheduled an appointment for
the end of August for a bronchoscope to see if there is any granuloma build up
and to administer Botox should we decide that is the right next step.
Since Sadbh is now officially a
toddler, Dr. Inglis wrote an order to change her trach from a Neonatal Shiley
3.0, to a Pediatric Shiley 3.0.
The difference with the Pediatric
trach is that it is more secure and less likely to get pulled out, especially
now that Sadbh is a lot more active.
Even though we had expected this
news, it is always very deflating to us to learn that Sadbh has made no
noticeable progress whatsoever. I know that the day will come when we will see improvement,
however it is a bit of a let down in the meantime.
Sadbh was exhausted by the time we
left Children’s and since we had postponed trach care until after we got home,
we had to work hard to try and keep her from falling asleep during the journey
home.
We failed and Sadbh was in a deep
sleep within a few minutes of leaving the hospital.
Once we arrived home, Nini and I set
up everything for trach care and when we were ready, we woke the little
princess up.
Princess Angry Bird was quite upset,
however she calmed down as soon as she got into her bath.
Sadbh loves bath time, and within no
time she was smiling and waving at her reflection in the mirror.
It took a while to get Sadbh back to
sleep, and once she drifted off, Nini and I jumped into action.
Trach care was stressful since we
were all tired. Sadbh obviously picked up on our stress and started to get very
fussy. This only stressed us out more, but we managed to keep control and got
Sadbh’s neck cleaned up and her new trach ties secured as quickly as possible.
Once we were finished, Sadbh decided
that she did not want to go back to sleep, so we got her dressed and fed her.
Overall, it was a very tiring and
stressful day.
We are seriously lucky to have such a
wonderful and intelligent daughter.
Take care,
Wayne, Katie and Sadbh.
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