Update on Audrey

November 19, 2008

Today was Audrey's optho and rheumy visit. She has had her first 3 doses of

Remicade, and her sed rate came right down from 22 to 5. Her eyes seemed to be

doing better at her last visit with the optho last month, just after her 2nd

dose of Remicade. So today we went for the appointment and he asked how many

times a day are you putting the drops in her right eye? And I said uh, none,

because all the inflammation has been in her left eye. He then said that she is

at a 2+ in her right eye, and still a trace in her left eye. So we are to start

drops in her right eye and continue in her left. And this is after 3 doses of

Remicade. Her joints have improved, but her eyes have gotten worse.

So the rheumy (who it was our last visit with because of him MOVING) after

talking with the optho, has increased her mtx to .6 cc weekly, and upped the

Remicade to every 4 weeks instead of every 8 weeks. We go back and see the

optho in 4 weeks and her new rheumy in 8 weeks. I cried during the whole

appointment. I gave him a framed picture of him and Audrey at her last visit,

as well as a picture I took of just her. I have his e-mail addy, and we're

going to keep in touch. I also wrote him a nice thank you letter, and told him

that I feel like I'm losing an ally in her battle, and thanked him for taking

such good care of my baby girl for so long.

So it's been a very difficult day. I was so expecting to hear that her eyes

looked great, and I'm disappointed that she's not responding as well as we had

thought. I'm also very sad that our favorite Dr. P is moving. It's like I told

him - we've seen him more than any of her other doctors, and so I feel like he's

a part of our family.

D.

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