Friday, September 24, 2010

See Anything Missing from this Picture?

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."

1 comment:

Rain said...

I need to ask a question about whether or not her PDA was open or closed and if you think it had anything at all to do with her Pulm Hypertension. Was she on Bosentan? If not, then what helped her overcome PH?
I hope you don't mind the questions but my daughter went through a very similar fight with almost dying from PH. She was on versed and fentanyl for a long time and we couldn't touch her.