I just wanted to give everyone an updated on Mary Payton We have had a couple of weeks full of medical testing including neuropsychological testing, physical and occupational therapy assessments, and EEG and an MRI. We wanted to get a good baseline on where Mary Payton is in all of these areas so we can determine if she is losing function or skill. We got the MRI and EEG results yesterday and although the EEG was nothing really that we didn’t know, we were very surprised by the MRI results. We had anticipated hearing that her disorder may have caused some atrophy of the brain as is common in Batten Disease patients; however, the test showed that her brain is “normally formed and myelinated with ventricular size that is within normal limits for age and shows no distortion by mass effect.” The final impression of the MRI noted “no abnormalities identified”. Although this may not sound like much in the grand scheme of what we are dealing with, Joe and I thought this to be great news and wanted to share it. We recently made a small medication change and increased Mary Payton’s Klonopin to see if it would help with her small jerks throughout the day. We knew that we would need to increase it eventually and felt it was time. It’s only been a few days, so still too early to tell how much it has helped. She hasn’t been sleeping well and looks pretty tired throughout the day, but it’s always a little rough when we have a med change.

We did a photo shoot with our friend, and Mary Payton’s Miracle Board member, Nikki Spreen, on Sunday morning. She is a children’s photographer as well as a stay at home mom to two beautiful little girls. As usual, we had a great time. I’m going to include a little preview that she sent me. If anyone needs some great pictures of their kids taken and you live in our local area, you should definitely check her out. 

 

The same weekend we had my sorority sister, Susan, her husband, Daron, and their baby Ella Grace come visit. We had a nice trip to the Audubon Zoo. We did have to hide inside from a little rain shower for a while, but we still had a great time. It was unbearably hot before the rain, so we decided it wasn’t such a bad thing. Here are some pictures from their visit. 

Well, we have settled back into our normal routine (if you can call it normal) after our trip to Disney World. We had a great time and the girls enjoyed every second. The adults had a pretty good time too. Both Mary Payton and Maison were troopers and were on their best behavior. A big hug and thank you to Jenifer Maninger, a friend of ours who works at Disney World. She arranged all kinds of special treatment for us while we were there and got us lots of great discounts. She is the BEST. We started out our trip with a visit to the Bibbidi Bobbidi Boutique, thanks to some of my sorority sisters from Ole Miss. Both girls decided on the “Pop Diva” hair do and they looked absolutely adorable. I will post some pictures on the site soon. Maison wore hers overnight, but unfortunately Mary Payton’s fell down before bedtime, but she sure did enjoy it while it lasted. We enjoyed special character meet and greets and got some great pictures. Mary Payton’s face just lit up when she got near any one of the Disney characters. Rarely have I seen her smile so much. I think her favorite had to be Tigger. We had a special meet and greet at the end of the week, coordinated by the niece of Mary Payton’s teacher, Mallory. We felt so special. There were a bunch of the characters there all available for pictures at the same time. You never get to do that unless someone arranges it for you special so a BIG Thanks to Mallory. We also took a trip to Discovery Cove to meet a couple of dolphins. The girls got to motion for them to “talk” and fed them squid. It was a great moment for the girls to enjoy. That was followed by a day at Seaworld where we took in the classic Dolphin and Shamu Shows. Maison slept through Shamu, but the rest of us loved it. Joe and I did have one adult night. We were treated to dinner at Narcoosee’s at the Grand Floridian, again by some of my sorority sisters. We were seated by the window overlooking the water and Cinderella’s castle and were able to watch the fireworks while we enjoyed desert….again, another magical moment. 

We are back to our real lives this week. Mary Payton started summer school and Maison started a new summer camp. She loves going to her “Big School” as she calls it. Summer school for the parish happens to be at Mandeville Elementary this year so MP is familiar with the environment. She has had a pretty smooth transition thus far. I hope to update this blog more often than I have so far, so you’ll hear from us soon……Love,Nikki

Sunday May 25, 2008

I have been truly overwhelmed by all the support I have received from my friends, acquaintances and people that I don’t even know. There is so much good in so many people. Obviously this has been a difficult time for my family, but it has been so much easier with all the prayers and support. I wanted to take a moment to thank a special group of people who have donated money to help our family personally, even before Mary Payton’s Miracle Foundation was founded. That is my co-workers at Parish National Bank and their friends and family as well as some other people I know that were contacted by the organizers at PNB.   This list is lengthy so bear with me.   A special thanks goes out to the following people: Susan and Louis Smith, Ryan and Jennifer Orgeron, John Vaughan, Jessica Shepard, Parish National Bank, Gilsbar, Lisa Hinkle, Gary Blossman, Phylis Julian, Freddie Elliott, Ladette Masters, Stephanie Culligan, Marie Campo, Jennifer Perilloux, Kay Moulder, Katie LaCoste, Stacie Kraft, Britta Bradbury, Brian Martinell, Michelle Langford, Terry Donahue, Betty Gill, Terry Nunez, Brandee Pittman, Judy Cazaux, Al Hamauei, Stacy Shaheen, Megan Daniels, Tammy Genusa, Ethel Turner, Becky Lotz, Denise Pritchett, Janelle Lagarrigue, Kelly Rodriguez, Melissa Sullivan, Bobbi Michot, Francine Ferrara, Kay Simmons, Madge Harris, Jennifer Cosentino, Melanie Daussin, Jack Blossman, Liz Charlot, Melissa LeBlanc, Joan Williams, Sonya Williams, Joyce Kemp, Curt Reinmiller, Barbara Hogan, Pat Grenat, Gloria Cutrer, Denise Eiselen, Joel Willingham, Crystal Fontenot, Tom and Julie Druen, Vonnie Rester, Doug Hale (and that’s not my dad), Jennifer Wilt, Jennifer Matherne, Schirley Russell, Stacy Breese, Erin Murphy DiZinno, Joe Omner, Sharon Gressett, Joey Brewer, Beth Zimanski, Susan Roth, Sherry Schwartz, Rich Bain, Billie Whitfield, Lana Accardo, Pam Wendell, Liza Zenor, Devon McKinney, George and Carolyn LeBlanc, Donna McManus, Mary Bellott, Bob Pecunia, Patty Nelson, Danny Lyons, Bob Maurin, Gary Bourgeois, Dionne Maricelli, Barbara Mussere, Gregg Quinlan, Mike Prenger, Angela Long, Kallie Wilkins, Wade Hawkins, Janice Evans, Aimee Domiano, Dion Mohr, Emma Ernest, Jeremy Smith, Krista Marchinko Henderson, Megan Daniels, Charles and Jennie Schiber, Charlotte Schiber, Ken and Beverly Wilt, Tee Betz, Elizabeth Guilott, Bill McGehee, Bob Zabbia, Cleve Fair, Wendy Leishman, Phil Jackson, David Lindsey, Shelli Domiano, Karen Liataud, Beth Harper, Monique Stubbs, Beau Long and Jessamy Core, Monnie Greer, Ronda Gabb, Laura Bertrantd, and Roxanne Anderson.  

I also want to think the following PNB employees who participated in “Jeans Day” to benefit Mary Payton and her treatment: Diane Davis, Amy Rutledge, Mike Prenger, Mike Blossman, Sandy Taylor, Jennifer Ernest, Leah Deffes, Breanne Cooper, Devon McKinney, Rebecca Reed, Teresa Morel, Stephanie Ussery, Lori Nelson, Becky Sara, Sally Fussell, Nichole Miller, Tammy DeFranzia, Jonna Turner, Patrice Conetti, Kristy Strain, Amanda Ballard, Kristin Clifton, Melissa LeBlanc, Kelly Buras, Sandra Townsend, Emma Ernest, Tricia Daigle, Sharon Gressett, Janice Brooks, Warren Haun, Vonnie Rester, Walton Greer, Tasharia Williams, Tammy Genusa, Sherry Schwartz, Shelli Domiano, Schirley Russell, Rod Dillon, Phylis Julian, Jennifer Wilt, Patty Nelson, Patsy Delatte, Pat Causey, Natosha Williams, Misty St. Romain, Misty Gannell, Melissa Sullivan, Melanie Daussin, Lisa Weber, Madge Harris, Leslie Harris, Mary Johnson, Lesley Burke, Krista Henderson, Kelly Rodriguez, Judy Cazaux, Kay Moulder, Joan Williams, Jennifer Cosentino, Jenifer Kimberly, Gregg Quinlan, Heather Puls, Francine Ferrara, Emily Matherne, Ethel Turner, Doug Hale, Denise Travis, Denise Pritchett, Susan Smith, Dawn McCormick, Debbie Morris, Danielle Parker, Crystal Bratschi, Clair Leger, Christa Davis, Billie Whitfield, Bonnie Held, Betty Gill, Barbara Smith, Barb Hogan, Angela Long, Amii Liberto, Lynette Kendall, Amanda Loyd, Alice Carroll, Tiesha Batiste, Joey Brewer, Lisa Hanson, Ann Maire Koehl, Brandee Pittman, Monique Bucas, Britta Bradbury, Lisa Zenor, Debbie Dubuissonn, Sam Sharp and Nicole Selihan .

A final thanks to all of those people at PNB who have provided meals for our family so we can spend just a little more time together during the week. All of you are AMAZING.