Hi Everyone! I wanted to post an update on the girls. They had a wonderful Christmas and have been feeling really good. We are still on the MTX injections. We were at Children's Hospital on Tuesday for a checkup. Katelyn's liver functions were elevated, but they aren't concerned right now. Katelyn is also flaring. She suddenly has lesions on her scalp that are reminiscent of Carly's scalp. So far it's responding to the topicals. Carly is doing great. She is still clear and maintaining the same dosage on her injection.
So ... I recently met with a photographer for the New York Times and did an interview with the girls about psoriasis. It was published online tonight and I'm mortified! There's something about seeing it that really hits home and brings back all those feelings from when we were first diagnosed.
Check out the link : http://www.nytimes.com/interactive/2009/01/15/health/healthguide/TE_PSORIASIS.html
I hope it is ok, I'm really not sure what to think?!
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I loved your interview. I think you did a wonderful job with it all and I'm so proud of Carly she did so good!!! It was fun seeing pictures of the girls and the family we sure did treasure our time in Florida with everyone. I found out that you can order a psoriasis education kit from NPF for classroom presentations. I just used this in Jake's classroom on Friday and it was a huge hit. Jacob really liked me in there and he seemed to thrive in the spotlight. Just thought I would let you know in case had not already heard of this program.
Thanks! I hope the interview helps others! I didn't see your post until today. After all this time, I have finally noticed the box to e-mail follow up comments :-)
I have seen the school packet, however they are pretty clear right now and thought I would hold onto it until we need it. However, I have given the school a copy to look at. They have been pretty good through all this.
That was wonderful to see. You all did a great job, and it helped Olivia to hear your daughter talking about the same things she is going through. What a wonderful idea, and thank you for doing that. I know that the story will be very helpful to other families, it was extremely helpful to me : ) Your girls are adorable!
I am also getting the kit sent to me Eliza, and I am planning to use it in Olivia's school. I would love to talk to you about how that went : )
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