Sadbh’s update – day 261

It was another rough night for Sadbh last night and she had to be suctioned and reswaddled a number of times throughout the night.

She had a great morning at home with Katie and for lunch we headed downtown to meet up with our friend Amy who works at FareStart.

FareStart is a great nonprofit culinary job training and placement program for homeless and disadvantaged people who which to get their lives back on track. We have been meaning to go there for ages and since things are quite at work, today was a perfect opportunity.

Sadbh was quite tired when I picked both her and Katie up from home and we were hoping that she would sleep right through lunch. However as soon as we sat down, she woke up.

Since she was facing the window, she was very content sitting in her buggy looking out at the passers-by.

By the time we were half way home, Sadbh was fast asleep in her car seat and slept for another 15 minutes or so after we got home.

We had to wait to manage trach care until after I got home from work in the evening, however it was quite easy since she was exhausted.

In the past week or so, she has started grunting when having a poo. It’s extremely funny to watch, but what’s interesting is that the grunting sound is coming from her mouth, which is an indication that there is some air leakage past her trach and through her vocal cords.

Even though we have tested the Passy Muir Valve on a regular basis, and not noticed a serious improvement, these slight improvements are keeping our hopes alive.

New photos (including a video of her having a poop)

Photos October 28.

All the best,

Wayne, Katie and Sadbh.