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Where's the big V? Kiera is up to two 4hour stretches a day on just oxygen connected to her passey muir valve on her trach! The backpack she is wearing is her feeding pump for the brief hour+ of her 3 daily feedings. Otherwise, she is pretty free to roam. I will probably need to finally child proof some things this weekend. :) The only trick is that the O2 tube can disconnect very easily so she needs to be very closely monitored while on the O2...even moreso than when she is on the vent which is, of course, all the time.

She is also increasing her signs exponentially! I found a Little People Zoo Set on craigslist and she adores the dolphin. She signs dolphin whenever she see it. It seems to be the first toy that she really identifies by it's name, other than baby or book, I guess. She learned the sign on her sign language videos and transferred the sign to the context of the toy effortlessly. Now she likes to rewind the Little Mermaid to dolphins scenes, and the playmat with the zoo makes dolphin sounds and says dolphin when you push the "d" button, which she does repeatedly. It is really exciting to see how much she is "speaking."

1st 30 minutes on a trach collar! No Vent!

Yesterday Kiera got to try her first 30 minutes off the vent! I will upload pictures later (as you see now is later). She maintained O2 SAT's of about 93 on 3 liters of O2 flow with the trach collar. The unfortunate thing is that the humidity machine that accompanies the trach collar is actually less portable than the vent with no internal battery and a short "leash." The trial worked out well while watching Blue's Clues or coloring. I have to ask our doc or RT if it is okay to get longer circuitry (tubes) to give her more mobility. I also need to see if there is other equipment they didn't send us like HME's to put on the passy muir valve sp she can walk around with just the HME and O2 tubing. This is an exciting first step(or 101st depending on your perspective) toward getting Kiera off her vent. She will be more exposed to getting sick because the O2 system is an open system rather than closed like the vent, so we will have to ask that visitors this winter have had flu shots and wash hands religiously (not just on Christmas and Easter).