Officially happy! Zoey is being tapperd off her ACTH. Her last day of meds will be the 29th! Today we had her EEG to see if she had anymore hypsarrythmia. The results have come in and she is cleared of her infantile spasms. That is what we have been waiting to hear the last 3 1/2 months! Now she can hopefully be on the road to recovery. We will be continuing the physical therapy and trying to catch her up in her motor skills, but even then she isn't doing too bad. The only worries now would be a relapse, also the Dr. Did say she was having a different type of seizures during her eeg. This means she could have epilepsy later on. We did know that there was a chance of that anyway so for now we will celebrate that this horrible condition is over. Moving on with life, and relaxing just a bit. The last 2 days have been better, she still isn't sleeping at all, but she has been smiling and laughing and reminding us who the real Zoey is. I hate ACTH. The side effects are horrible and I have never been so tired and worn out. However, the fact that I don't have to see her in pain with seizures is very worth it!
Plans are coming for our infantile spasms awareness fundraiser! We are still looking for a final location, but plans are in motion. The luau is a definite. There will be food, hula dancing, and fire breathing. We also would like to do some type of raffle and silent auction. Anything that can be donated to help with the raffle and/or silent auction would be appreciated! I will be setting up a place to donate funds tomorrow and will post the information on the infantile spasms event page on facebook. It is a public page so if I haven't added you, you should be able to get on without problems. If you can't locate it send me a message with your email and I will invite you. Please help us spread the word. We are excited to do this and want it to be a fun and an informative night. We can't do this without you all helping us too! Tell family and friends to ask work for sponsers or donations. Share on facebook! We hope to advertise in newspapers and radio. We want this to be BIG! Thanks everyone for thoughts and prayers. It's been a long time coming, but has finally paid off! Thanks to everyone!
