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Mary Kathleen Hable 
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 school 4 days per week at the early childhood center. 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. We are also planning on doing Therapeutic Horseback riding this spring. 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, August 20, 2008 10:25 PM CDT Hello! It is so hard to believe that summer is coming to an end. In about 2 weeks my baby will be in kindergarten! Next Tuesday we go to the parent orientation. They have a separate meeting for the special ed students which will be great so that we can meet the new special ed teacher. We will also go to the "regular" ed meeting as well. We met her kindergarten teacher this summer and we love her already!
Her device is having some technical problems which we unfortunately were unable to solve over the phone with Dynavox. We had to send it in to be repaired. Hopefully we will get it back within the next week or two. Mary is definitely missing it and so are we! She uses it so much that I feel kind of lost without it.
Mary has been doing great! She got her haircut yesterday, the first one in about 7 months since we've been trying to grow out her hair. It seems that her hair has been growing out rather than down! She has had such "big" hair lately I couldn't take it anymore! They just trimmed off the split ends and it made such a difference! But, the best part about it is that she didn't cry at all during the entire haircut! I was so excited I couldn't believe it! Today my mom and I took her to the mall to get some new school clothes. We got some really cute outfits for her-I'm ready for fall now so she can wear them!
Other great news is that we have Mary signed up for Sunday School! I wasn't sure if this would pan out because she would need someone to help her if she went. Well, I think God really wants us to get back into going to church because the director called me and told me that Mary's 2 paras from school last year had volunteered to do the job! I as still so overwhelmed at their kindness. They know Mary so well and now I can just drop her off and not worry at all. Thank you so much to Julie and Colleen! Words cannot even begin to express our appreciation for what you're doing. I'm so excited to get back into going to church again.
This weekend is going to be kind of busy. We are having a mini block party with our neighbors on Friday night and Sat Jim has to work and is going to haul rock afterward in our ongoing landscaping project! Sunday I'm going to lunch with my high school friends.
Thanks for stopping by!
Love, Eileen
Love, Eileen
Read Journal History
Hospital Information: Jim and Eileen Hable
Links:
http://www.tsalliance.org Tuberous Sclerosis Alliance
http://www.mnepilepsy.org Mary's doctors
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