Support

Ever since I started this blog, (and especially since the last entry) I have had many family and friends ask how they could help. Initially, my response was that just knowing that people were there for us was enough. As this journey has gone on and Rylea and I have asked for support, I continue to get the same question or comment; namely "We want to help you, just tell us how."

After some serious thought, introspection, and discussion, Rylea and I have found a few ways you can show your support.

1)  I make this #1 because it is the MOST important to us. Throughout this whole ordeal, there has been one person that has had to endure more than his fair share. He has been sometimes ignored, and he has been disappointed more than I would like to admit, yet he has stayed happy, loving, and caring. I am talking about our oldest son and Grant's big brother, Cole. I wrote an entry about him last August and how he has been our rock emotionally. He doesn't know exactly what is going on, he does know Grant isn't well. He watches out for Grant. He also watches out for Rylea and me. He cheers us up when we are sad. He gives us hugs when he thinks we need one (he us usually right). He is the strongest, most empathetic, caring, sweetest child I have ever seen. I am proud to be his father, yet part me is ashamed of the times I have to neglect him. With that said, Cole LOVES getting letters and packages in the mail (mainly packages). So, if you feel like it, you can send a little card, letter, even a care package. It would brighten his day and really help us out. Please email me and I will send you our address (I  really don't want our home address plastered across the internet). You can email me by clicking here or on my name in the About Me section to the right, then click on "Email". ====>

2)  I have had some people ask about sending money. In the past, I have told them to hold off because I wanted to set-up an account specifically for Grant. I have set up a bank account and I am in the process of setting a special needs trust. This trust will be used to help pay for Grant's current and future medical care. It is specifically for Grant and his care and will not be used for anything else. I can transfer money from the bank account to the trust. I have also set a page with youcaring.com that is linked to the account. If you would like to donate to this account, click here.

3)  Rylea and I are working on other ideas for fundraisers as well. If you have an idea, feel free to let us know. Currently we are looking at doing some fun-runs, and I personally am toying with idea of amount-based stunts (like if we raise X amount, I will dye myself purple and run in the Atlanta Tough Mudder next year).  The more ideas the better.

Finally, I want to thank everyone that wore purple in support of epilepsy and Grant on Purple Day this past March. Thank you for all your love, all your kind words, most of all, all of your support!!!

There and back again

It has been a while since I have given an update. There are many reasons for this; 1) I am a little lazy, 2) With three children including one with special needs, the blog isn't at the top of my mind, and 3) recently, I haven't really felt like sitting down writing it.

This isn't going to be a pity party, but writing this blog and rehashing the events of the struggles and triumphs in our life with Grant can be and is emotionally draining. People have often said to Rylea and I "I don't how you do it. How you handle all this." Our reply is usually "You have too, what alternative is there?" or "You just take it one day at time." That's just it, we take one day at a time, but to look at the situation as a whole, with the enormity and complexity it presents, is difficult and almost impossible. So, having to look back at the days that have gone by and the ups and downs that have happened becomes equally as difficult.

I knew some of this when I started writing this blog, I knew it would be difficult at times, but I also knew this blog would help, not only with raising awareness about epilepsy, but with us as a family getting through this. It brings a sense of catharsis (at least for me). So thank you for reading and sharing in our struggle.

The last post was at Thanksgiving and I had planned to write one around Christmas, but got a little busy. Rylea and I bought a house which we closed on in early January. So Christmas was a little chaotic. It was a little confusing for the boys as well. They were able to open their presents, play with them a little, then we had to pack to them up and be ready to move.

The move, like all moves, was a pain. But it is done now and we all love the house. Grant, Cole, and even Emery love exploring the house (yes, Emery is crawling, quite effectively, now). They all have their own rooms and Rylea and I even have a nice sitting area in our bedroom. In all honesty, the sitting area has turned into our tv watching area, where we cram the whole family on the love seat and watch whatever children's show is on before we put them to bed. It's a really nice bonding time for us.

Another thing happened around Christmas that wasn't so happy. Grant's seizures came back. Now, this wasn't totally unexpected. He is a young, growing boy and we couldn't expect his medicine to not be adjusted. After a few visits to the neurologist and numerous increases in medications, his seizures still hadn't abated. They weren't as bad as before, very subtle, but he was still in a dazed and confused state for long periods during the day.

Grant started speech therapy in October and he has shown enormous progress in his development. The five months he was seizure-free he has followed directions, starting speaking more, understanding more, and communicating overall much better. Even after the seizures came back, he was still progressing and still is.

Recently, Rylea and I were put in touch with the epileptologist in charge of the Epilepsy Center at Children's Healthcare of Atlanta. After reviewing Grant's case, she wanted Grant to get a 24hr video EEG. That EEG took place last week (3/11).

Instead of 24hrs, it turned into 60hrs. For the first 12 hours, he did not have any seizures. The next morning he had one. That afternoon, he had another. Later that afternoon, the Dr. came in and told us what we thought were seizures weren't actually seizures. They were "seizure-like" episodes. Basically, they looked like the beginning of seizures on the EEG, they just didn't turn into full-blown seizures. The second morning, he did have a seizure and they were able to capture it on the video and the EEG.

When the Dr. told us they had captured a seizure, we were so relieved. It meant that we may get some answers we didn't get in Cincinnati (since he didn't have a seizure up there), and it also meant we were able to go home.

We did get some answers, just not the ones I was wanting or for which I had hoped. On the other hand, Rylea had fully anticipated what we were told. We were told that Grant has Lennox-Gastaut Syndrome.

Lennox-Gastaut Syndrome (LGS) is a rare, severe form of childhood-onset epilepsy which is difficult to treat. In general, the prognosis for those diagnosed with LGS is poor. Very few people diagnosed with LGS lead independent lives as an adult as a result of the daily seizures, behavioral problems, and cognitive issues. There is a very high likelihood that Grant has or will have mental retardation requiring some extra treatment and specialized classes and therapy.

Rylea has often told me that she has felt I have been approaching/dealing with this whole situation (Grant's epilepsy) with blinders on. I have often accused her of finding the worst-case scenario and latching on. But I thank her for this. Her approach has kept her prepared for the worst while hoping for the best. My approach, of knowing what could be the worst, but somehow believing the best case scenario, hasn't worked. Yes, it has helped me keep an optimistic attitude and face on during this whole thing. But when the truth comes out, my fall is much harder and faster than Rylea's. 

The one positive that has come out all of this, is that it really has adjusted our priorities and thinking. Before, I was more focused on my career and making sure I make the most money to support the family. Now, the focus is the family.

As of right now, we need as much love and support as we can get. The reality of the news of the Lennox-Gastaut Syndrome has hit us pretty hard. We continue to live one day at a time, we just find some days are harder than others. 

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. 

Grant's Testing (Cincinnati Children's part 2)

 As many of you know, Rylea, Grant, and Emery made the trip back to Cincinnati Children's at the end of August so Grant could have multiple tests done. Grant and Rylea spent nine long days in the hospital with Grant hooked up to the EEG most of the time. He had an MRI, PET scan, MEG scan, and a post-Ictal scan. I cannot imagine how difficult this was for both of them. I want to send a heartfelt and extreme thank you to Lauren, Ricky, Ann, Linda, and Kate, your help was invaluable. Lauren, you were the guardian angel Grant needed. Thank you so much.

Rylea and I along with the boys went back up to Cincinnati this past weekend for a followup appointment. I will post what we learned from the tests results in a later blog.

Instead of giving the gritty details of his testing, I have decided to post pictures of the week.

And then FREEDOM

And a little fun in the sun