Our beautiful Mary was born on June 23, 2002. She was diagnosed with Tuberous Sclerosis on August 1, 2002. Mary has tubers in her brain, kidneys and in her heart. On December 1, 2004 Mary had brain surgery and had four of those tubers removed. She was seizure free for 3 months, but unfortunately the seizures returned. We have recently gained good control over her seizures since we added Vigabatrin. We are very hopeful that this control will continue for a long time. Mary is developmentally delayed and attends half day kindergarten five days per week. While she is at school she gets OT, PT and Speech Therapy. She also has over 8 hours of private therapy each week. She is currently receiving OT, PT, Speech, Feeding and Music Therapy. She will also be taking a dance class which starts in early March 2009. Mary is an inspiration and touches everyone that she meets. We are so proud of her and love her so very much.

Mary loves going to school and therapy and we have been blessed with a wonderful team of therapists and teachers. She also enjoys playing outside, reading books and spending time with her cousins, Tommy and Anna.

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Please visit our friend Jason Beecher's website at www.journeyforjess.com He is setting out on an amazing journey to raise money for Epilepsy and Tuberous Sclerosis.
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Journal

Wednesday, February 25, 2009 2:05 PM CST

Ok, so it has again been way too long since I updated this site! Time has just gotten away from me the past few months. Luckily, things have been going really well for Mary. Her seizures are the best they have EVER been. I’m afraid to even say it out loud. We saw Dr. Frost a few weeks ago and he thought she looked great. She will need to have a cat scan and MRI this summer, but other than that we don’t go back to see him until August!

Mary had botox injections in early January. It was not a pleasant experience. He gave her 11 injections total in her neck, bicep and calf. They gave her versed, which is a mild sedative, which helped a little, but she still cried and fought a lot. It was hard to watch. But, the results have been worth going through the procedure. We just followed up with him last week and Dr. Gormley was very pleased with the results! Everything is better as a result of the injections. She is walking heel-toe vs. toe-heel and her neck is looser. We are going to do the injections again on 5/15. Another unexpected result is that her speech has taken off~we think because of the botox! Her neck is much looser so we’re thinking maybe it is just easier for her to talk. Her speech has been so exciting to hear lately! She is saying lots of new words and even putting 2 and 3 words together! It is great.

In March Mary will start dance class again at Kids Abilities! We are so excited! She will be in class with her good friend Kylie so that will make it even more fun. Other than dance, Mary continues with her hectic schedule—PT, OT, Speech and Music Therapy and of course school. I had her conference last night and it was wonderful to hear how far she has come since the beginning of the year. We are so lucky to have such amazing teachers and therapists at school!

Jim is in Washington DC this week (along with people from all over the country) to lobby for funding for TS research. He has been to nearly 75 offices dropping off information and explaining about TS. I’m so proud of him!

Anyway, that is the update. Thank you so much for checking in on Mary! We really appreciate your love and support!!

Love, Eileen

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E-mail Author: ehable@hotmail.com

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