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 all day first grade. 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. 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.
Saturday, November 7, 2009 11:50 PM CST
It has been WAY too long in-between updates! I guess I've been spending too much time on facebook! Mary is now a big first grader and is just loving school. She has a one-on-one para with her all day which is so reassuring. They are two of the nicest ladies we could ask for to take car of our Mary! She is in the regular classroom for approx 1 hour per day, otherwise she is busy in the special-ed room, getting ot, pt and speech or in one of the groups they have set up. She takes the bus home, but I drive her in the morning. She has private OT, PT, Speech and music spread out Mon-Thurs before school and then I get her there around 10:30AM. It works out pretty well and school has been really flexible which helps so much.
Medically, she is doing great! Her seizures are under good control and we are waiting to hear if our insurance will agree to pay for the newly FDA approved Vigabatrin. What a relief that has been approved so we don't have to pay out of our pocket anymore.
Mary has progressed SO much since my last update. Her speech is taking off in ways we never would have expected. She is actually saying a couple of short sentences such as "I want yellow ball". This is so huge for her!! She is also copying tons of words that she hears us say which is also so much fun. We feel so blessed that she is doing so well and we have avoided a hospital stay for several years now!
Well, that is all for now. I wanted to get a quick update on the site so you didn't think I had completely abandoned caringbridge! Thank you for all of your continued prayers and support! I'll try and post new pictures soon!
Read Journal History
Jim and Eileen Hable
http://www.tsalliance.org Tuberous Sclerosis Alliance
http://www.mnepilepsy.org Mary's doctors