Over a Dozen Reasons to be Thankful

Saturday was absolutely amazing! Our Team Ayden's Avengers raised over $500 for the Hemispherectomy Foundation. The Hemifly was a beautiful sight to see throughout Ryan Park on Friday and then Saturday morning we were joined by friends to do our walk on a beautiful morning. We are so glad to support the foundation that connects Hemi families across the globe, provides information, promotes awareness, and funds research. Without the Hemispherectomy website when you Google "Hemispherectomy" as a scared, nervous parent you would simply find articles entailing all the things that could go wrong and the risks could just make you feel more worried and alone than before. When parents are looking at this option now they find a website with information, contacts, and most importantly stories of hope.

We also had several virtual members that are not pictured we want to thank: Pat Gunnell, Jana Hoffman, and Teri Canfield. We are looking forward to next year!
 In just two weeks, we will be packing for another trip to Cleveland, another sleepless night, another tough morning and long worrisome day. However, one thing we know, and that was reinforced on Friday and Saturday is we will not be alone. THANK YOU!

Another Hemi, but with it More Hope

Ayden's second hemispherectomy will be on May 30th. His first hemi almost three years ago was functional, only taking the tissue necessary on the right side(temporal lobe) and disconnecting the right hemisphere. This surgery will be an anatomical hemispherectomy - taking out the remaining tissue that could be causing the seizure activity. The recovery time will be longer than before, but he should not lose function so he will not require the stay at the rehab hospital or intense therapy when we come home. We hope he can return home within two weeks ready to continue his current therapies and enjoy his summer. Ayden's epilepsy will not be "cured" by this surgery, because we know he has damage in both sides. The damage on the left is significant enough to cause seizures, but we really feel these new seizures(since Jan.) are coming from the right hemisphere. Our hope is to see a significant change in the frequency of his seizures and control the remaining activity with medication. Ayden currently seizes in clusters a few times a day and we are certainly ready to get the surgery completed as soon as possible. This surgery has risks, but we feel we have to give Ayden his best chance for success without seizures getting in the way. The decision to do this surgery is not easy, but the increase in Ayden's seizures has really helped to convince us. In January, we started seeing sporadic seizures a few times a week we are now up to multiple clusters each day and the movements seem more aggressive each time. This past Saturday, Ayden seized and slept off and on until about 3 PM when he finally got off the couch. Our hope is with the "static" that seizures cause gone Ayden will make incredible gains. We are full of HOPE, that this will help him achieve the goals he has for himself too eliminating some of his frustration. Already, many of you have shared your thoughts and added Ayden to your prayer lists. We appreciate all the prayers, kind words, and thoughts. Many people have already offered to help in so many ways, Thank you!