Sadbh slept great for Larissa last night did not wake up until nearly 5:30am.
When she woke up, she looked at Larissa and with both hands, she made the baby sign for milk followed by the sign for Mommy. Larissa new exactly what she needed. She called Katie down and breakfast was served.
Peggy came over early today to help my father with trach care before we headed off to the hospital.
When it came time to leave, we had to wake Sadbh up from a deep sleep, and she was not very pleased.
She constantly turns heads, and while we were in Children’s today, we even had nurses that had only met Sadbh once before, come up to see how she was doing.
Our meeting with Dr. Inglis went well, however we did not receive the results that we had anticipated and hoped for.
He was impressed with Sadbh’s physical developments and could not believe how big she was getting.
During previous bronchoscopes, she had been very easy to keep calm. Today was quite the struggle and she fought it tooth and nail. After Dr. Inglis had removed the scope from her nasal cavity, Sadbh looked directly at him and pointed as if to say, I thought you were a nice guy, but I’ll remember you the next time.
It gave us all a good laugh to say the least.
Unfortunately he did not see any significant improvement in her vocal cords, and admitted that at this stage, he was more skeptical that there would be any spontaneous healing of her vocal cords.
In an effort to prevent any development issues with speech and her voice, Dr.Inglis highly recommended that we consider a procedure where he would inject Botox into her vocal cords that would open her airway allowing exhaled air to flow though her vocal cords when using the Passy Muir Valve.
This procedure would not help with resolving her vocal cord paresis, but it would help her to develop her speech.
Obviously this was not the news that we wanted to hear, and it did take the wind out of our sails.
Since we have received nothing but good recommendations and advice from Dr. Inglis from the start, we both made the decision to schedule Sadbh in for this procedure on the 28th of March.
While we were scheduling her surgery, she drew the attention of all the staff in the clinic and was in her element flirting with everyone.
Afterwards we headed up to the NICU front desk to see if any of her nurses were working and we got to catch up with Jen, Sue and PJ.
PJ was the first of the Children’s NICU nurses to meet Sadbh as she was responsible for transporting her from Swedish to Children’s when she was two days old.
Coincidentally, we also ran into Robin, Sadbh’s Occupational & Physical Therapist. Robin was thrilled to see how well Sadbh was developing and Sadbh was fascinated with Robin’s earings.
Even all the front desk staff remembered her and were delighted to see her.
Despite the emotions that both Katie and I were going through after our meeting with Dr. Inglis, it was humbling to see all the parents coming and going from the NICU, and to think of how far we have come since last year.
Take care,
Wayne, Katie and Sadbh.
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