Update

Addison is doing pretty well. for the past few days, she is holding steady. At times, they are able to wean hr oxygen down to the 70's and the oscillating vent down to 28, but then she will have an episode and end up back where we started. I feel like it is three steps forward and then four steps back. I know that it is just part of the roller coaster and I am thankful for any and every bit of movement in the right direction. We just really want to get her dependency on the machines weaned a little bit since when she has some of her episodes, they have to use all the support available with the oscillating vent to get her stabilized and if she were not to respond, the next step is ECMO.

They say that she is not stable enough for surgery right now since even changing her diaper can put her into an episode and cause her stats to drop.

I actually got to hold her hand last night. She had a really good day and her stats had been stable for a while, so they told me that it was OK to touch her. When I held her hand, I swear my heart grew three times bigger. She is so strong and has been through so much and I love her so much for that.