Well hello there! Long time no update.....I know. I would tell you that I am going to do better with updating but I don't want to lie to my readers, so I won't. ;-) But there is a lot to update you on. The most marvelous thing......as of the end of Feb we are now at OVER A YEAR SEIZURE FREE! Amazing!! Something that I thought would never, ever happen! When you child is in the hospital every 2 weeks-a month over night, you never imagine that it will ever end. Now, I don't really feel like they are gone for good. I am still always on watch for them to happen again, but for now we are just happy with every day we are granted that free from them. I am hoping that it continues!

We recently attended the National Tay Sacs and Allied Disease Annual Family Conference in Atlanta, Ga. We had an amazing time and met some truly wonderful people! It was great and busy, busy, busy! We learned a lot about different types of research going on and in the evenings we got to hang out with all the families. The hotel had an gorgeous zen garden that Lily loved!

We also got a chance to stop and see my mom in Sc and visit the beach! It was cold but that didn't stop the kids from playing in the waves! CJ went quite far into the water too. And man was that water cold, cold, cold! But hey when you are from Ohio you take the beach however you can get it! Taz was great in the sand but he wasn't to sure about the waves. The water didn't seem to bother him but the foam on top of the waves, that he didn't like!

We have been so inspired by the NTSAD that we have set a fund raising goal of $20,000 before the next conference! Please keep you eyes on this blog for more information about upcoming events we have planned and ways that you can help!

In other news Lily started taking swimming lessons at our local YMCA. I was really nervous about her in the water. Her attention span is pretty short and while her impulse control has improved some, it's not where I would prefer it to be, but she really enjoys the lessons, so she listens and has been doing really well! I'm glad, since we swim a great deal in the summer it's important that she know how. She has always been able to swim under water without a problem. It's the surfacing and staying up that she has the problem with. Her swimming teacher is great and I have no doubt that she will be swimming like a champ in no time!


On a less pleasing note, Lily is having a lot of learning problems in school. Her short attention span and problems with her short term memory are making it difficult for her to learn. We have an amazing team at school working with her but we are all having trouble figuring out a way to reach her. If anyone has any suggestions, please let me know!!

And the final note before I dash CJ got a puppy! She is a beautiful, yellow lab that we named Argo. She and Taz are best buds! As always thank you for reading and sharing! Please continue to share! I often hear from people who just need someone to talk to that are having similar issues with their children. I love being able to be there for people who need it! Until next time!