Thanksgiving

Thanksgiving is here and Rylea and I would like to give thanks. Thanks to all who read this blog and care about Grant (friend, family, or stranger). Your support, spoken and unspoken, has meant the world to me, Rylea, Cole, Emery, and especially Grant.

To the Albers family, thank you for all that you do and have done.You all have helped us more than you will ever know. Thank you Linda for coming down on a moments notice to be with Rylea when we first found out about Grant's seizures. Thank you for staying up late with me while we watched marathon sessions of Downton Abbey. Thank you, John and Linda for being the best grandparents Grant to could have, giving us the all support we needed during a very difficult time, and raising a daughter that can handle anything that comes her way, no matter how challenging (including me). Ann, thank you for being Rylea's shoulder to cry on when I couldn't be. Lauren, you have been a champion for Grant since you heard about his epilepsy. Thank so much for organizing everything for the epilepsy walk, for being Grant's guardian angel during his testing, and being there for Rylea. Ricky, thank you for putting up with Lauren so she could be Grant's guardian angel and watching Grant while I was up there with him, you are truly one of his favorites. Kate, thank you so much for all of your help during Lauren's wedding. We could not have made it there and had such a wonderful time without you. Beth and Tom, thank for all the support, letters, and prayers. And to all the Albers family, thank for all the love, support, and prayers you have sent our way. It has not gone unnoticed and is immeasurably appreciated.

To my family, thank you so much for everything. For all the dinners and the late night chats. Thank you for making Rylea feel like she truly is a part of our family (for better or worse). To my mom and dad, thank for all the encouraging words, sympathetic ears, guidance, and support you have provided us. Thank you for being the best grandparents Grant could have. To Todd, thank you for listening to me whine and bitch and giving me a distraction when needed. Thank you for finding the "anonymous donor" that got us through a rough patch and made things much easier on us. To Mark, thanks for the support and concern you have shown and willingness to give whatever we have needed.

To our friends, thank you so much for being our friends and understanding that being a true friend is being there for the bad times as well as the good. To the new friends we have made in Ivey Ridge, your friendship over the past two years, and especially the past six months, has meant the world to us, thank you for that. To Reid, my brother from another mother, thank you so much for helping me get my head out of the situation when I needed, providing the distraction when I needed, and the support when I needed. You are the best friend I could have. 

Thank you to all those who have ever uttered a kind word or said prayer for us. It has helped us cope and kept us going. To all those mentioned in here and those unmentioned, you have helped change the lives of our family and especially Grant's for the better. I cannot express how appreciative we are and we owe an immense debt of gratitude to you all.

Thank you so much and Happy Thanksgiving!!!

Test Results

I have been meaning to write this to give an update on Grant's testing results. Sorry for the delay.

It has been about 2 months since we received the test results and we are still trying to figure out what they mean. I will start with the good news (and it is very good news). Grant has not had a seizure since mid/late July. Ironically, the seizures stopped just before he and Rylea left to have all the testing completed. Grant was in the Hospital a total of 9 days. During this whole time he was off his medication and he still did not have a seizure. There were spikes on the EEG that showed some pre-seizure activity but not full blown seizures. While this is excellent news, the one time we wanted him to have seizure, he didn't.

The second part of the good news is that the neurologist does not believe he has cortical dysplasia. After reviewing the MRI, PET scan, and MEG scan, by three separate neurological radiologist (including one that specializes in pediatric neurological radiology), they could not find any evidence of cortical dysplasia. They did notice a "white spot" and what we were told was this was a little unusual for someone his age, but it could not be the cause of his seizures.

The third part of the good news was that since he didn't have cortical dysplasia, and he doesn't have any brain damage caused by disease or injury, the cause of seizures is more likely genetic. Genetic meaning the way my genes and Rylea's genes combined to make Grant, so it was not inherited. The reason why this is good news is because there is a possibility that he might out grow the epilepsy. This possibility is tempered with the fact he has developmental delays most likely caused by the amount and timing of the seizures. Children with developmental delays and seizures are less likely to out grow them. But, there is a possibility, unlike with the cortical dysplasia.

Now, for the more challenging news. While we are very happy he hasn't had a seizure since July and he didn't have one while he was being tested, the neurologists could not see where the seizures were coming from or to where they were spreading. Therefore, the tests were fairly inconclusive other than he doesn't have cortical dysplasia.

The other part of the challenging news is Grant's developmental delays. The seizures began at, arguably, the worst possible time in a child's development; right when they begin to speak and learn to associate objects and actions with speech. Every time Grant would learn something, he would have a seizure and then have to start all over. It is like working on something on a computer and but when you go to save it, you restart the computer...every time. Eventually, Grant stopped talking all-together. You cannot understand what this did to Rylea and I as we watched it happen, helpless to do anything. The problem was, we had to stop the seizures first.

Now the seizures have stopped and we have Grant in speech therapy. Things are coming along, not as quickly as we would like, but they are moving along. I think Rylea and I both knew this was going to be a very LONG process and journey, but we never anticipated the ups and downs. We are hoping to start him on occupational therapy soon. This is more like play therapy and will help him interact with others more effectively (boy, if that didn't sound like a therapist talking).

Like all people, Grant has his good days and his bad days. While he still doesn't talk much, he lets us know what he wants and when he wants it. In the past month or so we have seen Grant smile, laugh, and play more than we have in a while. We know there is still a little boy in there that wants to come out and we are giving him everything we can to make sure he does.