‘Just a quick note to let you know that we saw Dr. Shapiro yesterday (UCLA ENT) and all looks good in her area of expertise. She said Rudy’s airway looks “beautiful” and even let me take a quick look down the scope – very cool. She’ll want to follow up with us sometime in April after the repeat sleep study (yet to be scheduled). Just like last time, if Rudy passes, we’ll plan a strategy for decannulation but if he doesn’t then we’ll want to make a point of seeing Dr. Shapiro more regularly until he is strong enough to wean. She did prescribe a bigger trach size since our big boy is growing out of his current size…which is why we’ve had such a time with his trach working itself out lately. The new trach tube size will be the same in diameter but longer so it’ll be more secure. ‘Hopefully this will eliminate the deluge of late night trach changes we’ve had recently.
Hey! Speaking of “deluge”, Rudy overcame another big developmental hurdle on Tuesday evening. Check this out!…Wunderkind can now get himself out of the sitting position when he gets tired!
After a bit of a plateau, it’s fun to watch Rudy in a season of rapid progress mastering new skills of which he is so clearly proud!…and all of this growth & progress is being supported by a shunt 2.6mm in diameter through which ALL of his blood is being circulated!! Amazing…thank you Jesus for each step forward (both big and small) for Rudy!!