Hi, this is Ingrid.
I think I've finally learned how to post on this blog! When we get back from the hospital at night, I am usually just worn out--too tired to figure it all out. This morning Raymond has gone to be with Jilly, so I am able to concentrate for a few minutes.
After a rough first day or two, Jilly is settling into the routines of the Rehab floor. Weekdays she has several therapy sessions per day: speech, occupational, physical. Her ability to concentrate has risen a bit each day, and after a physical therapy session, her oxygen level is high enough to allow her to go without that "hose" thing for the rest of the day. Next week they will be weaning her off the trach, improving her comfort level and, we hope, allowing her to begin speaking.
We have been trying to determine how best to "manage" her visitor schedule, and she is beginning to participate in this task. Yesterday she wrote a note that said, "Tell everyone they have 5 minutes." We have allowed more than that, but are being careful about the two-at-a-time rule. The two of us have 24-hour passes.
On the lighter side, Jilly has been trying to implicate her friends when she wants to ignore instructions or rules. The other day a nurse put ointment in her eyes and said, "Now don't wipe that off." As soon as the nurse was gone, Jilly grabbed Zari's hand and used it to get rid of most of the ointment. Zari says, "I was framed!"
Jilly is also imploring some of her friends to help her bust out of Bellevue. I think she knows who might be a soft touch, and she tells them "Let's just go!" She has asked for "delicious beverages" and "milky substances," and keeps thinking someone will bring us all a beer soon.
While they are pleased with Jilly's progress, her doctors are still saying four to six weeks in Bellevue. We are putting our ducks in a row to facilitate and support this as best we can.
On a few occasions I have had to be a bit of a troublemaker (there was an unpleasant moment involving an intimidating security guard), and I want you all to know that the support we are feeling from all corners of Jilly's world have given me the strength to behave in ways to which I am not generally accustomed. You are all angels in my eyes.
Many thanks,
Ingrid
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3 comments:
Thank you for this post, Ingrid. Sending so much love your way. Jillian is so fortunate to have you as a mom.
All my love,
Yve
Ingrid,
It's so nice to hear from you on this blog. I will be in NY next Sunday for a couple days. I can hardly wait to see Jillian and you and Raymond.
xoxo
Rani
Thank you, Rani. I told Jilly you were coming, and she wrote a sentence explaining to whoever was in the room that you were her high school friend. It will be great to see you, as it has been to see all the Academy friends who have been here since day one.
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