Paris January 2011 Update
Saturday, January 8th, 2011Hello Everyone,
Happy New Year everyone. I wanted to email you on Paris’ most recent scan results. We were scheduled in New York January 4-7 for our routine 3 month scan work up. Paris underwent a MRI of the brain/spine, MIBG injection and scan and Bone Marrows. The results of the scan were stable, no new disease and the new spot that presented itself on the November 2010 follow up scan was still present but unchanged therefore they are still contributing it to being a blood vessel. We were able to fly back using corporate angels which provided us with a private company jet, which was much better than flying commercial. They will continue to monitor Paris every 3 months in New York. Our next scan date will be sometime in April.
As of now, Paris continues to be on no treatment plan. The tested her PHA levels to see if she is able to receive some of the vaccinations that she was never able to receive due to treatment at 10 days old.
We continue private Physical Therapy once a week and she also receive PT support within the school environment due to her having an Individual Education Plan (IEP).
So now that the scans are stable we have to go ahead and plan for the corrective spine surgery which is the placement of the growing rods in attempts to improve the 56 degree curvature. We will do the surgery in Chicago because both specialists in Chicago and New York collaborated and agreed on the same plan for Paris. Doing th esurgery in Chicago will allow me to be closer to home, still work and have family support. I have a consultation with the orthopedic surgeon Monday January 10 to finalize our surgery date, which will give Paris just enough time to recover and then jump right back into scan schedules.
Paris has started Pre-school in November 29 (exactly 2 years from the date of diagnosis) and loves beign in school. She loves her classmates and teachers. She loves being the helper at school. Ive gotten reports that shes very social during snack time! She’s very independent and wants to do everything her self.
I wanted to thank a very special group of girls from the that I met in New York who have followed Paris’ story and have decided to take on a fundraiser opportunities in honor of Paris scheduled in New York for January 28, 2011 and March 26, 2011.
As always please continue to think about all of the families who have lost their children to this disease and all who are currently going through treatment plans.
Please continue to view her website and leave comments at www.prayforparis.info
Lauren, Ralph and Paris