Sleepy time

Alright so first off, seizures are still there... We are having good days and bad days still. Not much new. Night time still seems to be the hardest time for her and no one knows why. The doctors did increase her dosage again so we are playing the waiting game once more to see if this higher dose will work. It will take another week or two to tell the difference.
Today was her first day of the physical Therapy. Boy is she gonna work! She did great, but she will be working now! I have been given some exercises to help her WANT to be on her tummy. I now know the reasons behind  why it is important to be on her tummy. Bless her she hates it. Tummy time is important because it teaches the babies to put weight on their opposite shoulders as they try to reach for toys in front of them. This then leads them to reaching and scooting and eventually crawling. So tummy time it is! But for Zoey we will be doing modified tummy time. We are also working on getting her left arm to come out and get weight on it as well so she can use it as much as she does her right hand. The other exercise is to get her interested in her toes. Again a modified version. She doesn't actually lay flat on her tummy, instead I hold her kind of crunched up and bring her toes up to her line of vision and let her just reach out a hand. She already loves her toes!  She was wiggling them and touching them so I think that exercise will be fun for her. Her modified tummy time will be getting her resting on an arm rest and on her knees, and then using her arms to keep her up. She is higher up so she will be able to see whats going on around her without having to look up really far. She doesn't like that one so much, but she was doing so well I am excited for her to keep going!
Her EEG was supposed to be today, but because her seizures are still going on, we had to cancel. No point in going in for them to tell me that she is still having seizures.. So the plan is to wait...again and see if we can get them stopped then call and get an EEG done. Hopefully it will be soon. Wednesday she will have another therapist come to check her vision and see if there is anything we can do to help her with her tracking. I am not sure she needs help with that one. She has good days where she seems to track just fine, but every once in awhile she will be grumpy and not want to do anything. All in all things are going ok, and at least I am feeling like progression is happening versus just waiting for anything to happen. She is so happy to be with people and to chat to everyone.. already a social girl!

I have wondered wether or not I should post videos of Zoey going through her Infantile Spasms. I don't like seeing these videos because she is not happy. It's what I see everyday. Heartbreaking.  Watch the videos at your own viewing risk. The reason I have posted them is because Dec. 6-10. 2013 is infantile Spasm awareness week. With that, me and some other parents with IS children are grouping together to create a fundraiser to give the money to research for IS. One of the most frustrating things that I hear from dr.'s is," We just don't know enough about IS." They don't know enough about what causes it, or how to treat it. In order to get the help that these kids need, we must get this information out there. Dr.'s need to know how to diagnose it. They need to know how to treat it. They need to know how very serious and dangerous it is to leave untreated. I will give more information as it becomes available. Any donations, or help to find ways to get the word out please contact me. If you would like to learn more about IS here is a wonderful website to check out: http://www.infantilespasmsinfo.org