An Update on Seth

Seth has gone through several changes this year. Unfortunately, one of the changes is that his seizures have returned with greater frequency. Seth had several seizures in October and November last year, but things were quiet over the holidays. The new year brought an uptick in seizures, a med change and a change in school placement.

After much careful consideration, Tony and I decided that the private school Seth had attended since Pre-K was no longer able to meet his educational needs. Seth is very bright and works extremely hard in school, but due to the effects of epilepsy, he requires accommodations to help in areas where he has deficits. Seth had a neuropsychological evaluation and multiple assessments at school in order to determine his eligibility for special education services. He now has an Individualized Education Plan which specifies the services he will receive. The transition to a new school mid-year presented some challenges, but Seth did well academically and made some new friends. Seth missed quite a bit of school because of the record breaking winter we had, increased seizures and medical appointments. And in the middle of it all, he developed appendicitis and had an emergency appendectomy. Despite the bumps, Seth continues to bounce back.

Seth has had more seizures already this year than in any previous year. The medication he started earlier this year has not been effective, and he has gained a considerable amount of weight since coming off his previous medication, which acted as an appetite suppressant. We are concerned about his sleep, as he has been napping daily, which is highly unusual for him. We have requested a sleep study and are just waiting for it to be scheduled. Seth had a neurology appointment last week and we agreed on another med change. He has failed so many meds that the likelihood of finding one to be effective is very unlikely, but we are still hopeful that his seizures can be controlled. We have also decided to schedule another video EEG long term monitoring, which has yet to be scheduled. This involves a 3-5 day inpatient stay with 24/7 monitoring via EEG and video in hopes of capturing seizure activity. We need to find out if his patterns have changed in order to plan next steps. Attempting surgery again could still be an option, although after going through it once already, not one that we look forward to. However, if we find that surgery is the best option moving forward, my feeling is that we would try again.

It is hard to be at this unknown point again. It feels like life is up in the air, yet the world keeps going on all around us. My challenge is to try my best to live in the moment and not get caught up in the what ifs and the unknowns. Please pray for wisdom as we continue on this journey.

A Bittersweet Anniversary

Tomorrow my sweet, middle son turns 11 years old. Last year at this time, we were also preparing for a birthday, but we were preparing for something else as well. We were preparing for Seth's brain surgery. How scared and sad we all felt, but we tried to put on a happy face and celebrate anyway. I am happy to say that we have had a lot to celebrate over the past year, and our wounds from last year, both physical and emotional, have mostly healed. 

September 2012

Over the past year, Seth has had only two seizures that we know of. We last saw his neurologist in June and she has no medical explanation for his decrease in seizure activity. Seth had another EEG in June and the results were the same or similar to previous studies, meaning that nothing has changed in his brain. We know that at some point Seth's seizure activity may increase again, but I can't even begin to express what a breath of fresh air this lull in activity has been. It has allowed our family to focus on things other than seizures, medical appointments, medical bills and insurance companies. We have been able to focus on life instead, and we have been able to feel a thankfulness that I don't think I would have known if we had not had this experience. Despite all that my son and our family has endured, we are blessed beyond belief. You are our blessings. Thank you for being in our lives.

Purple Day for Epilepsy Awareness 3/26/13

We're not looking back.

Epilepsy Warrior!

Purple Day is Coming!

Purple Day is coming! March 26th is designated as Purple Day, an international day of epilepsy awareness, in which supporters are invited to wear purple in support of epilepsy awareness. Our family will be participating in support of Seth, and we invite you to join us and wear purple to help raise awareness, because every seizure matters.

Five Months Seizure Free!

I am happy to report that Seth has been seizure free for five months now! I hadn't intended to be away from the blog for so long, but sometimes I feel like I'm holding my breath, afraid to speak about how well Seth is doing for fear that I will jinx him. I know it's a silly thought, but it's strange how the mind works.

Since my last blog post, Seth had a follow up appointment with his neurologist and was given the all clear for all activities with no restrictions. The swelling from the fluid pocket reduced and was back to normal approximately two months post surgery. His neurologist really can't explain why Seth has had no seizures since the craniotomy, but has said that she has had some kids go up to six months seizure free after the procedure. Whatever the reason, we are enjoying the honeymoon period and will take each and every hour, day and month we can get without seizures. We have decided not to make any changes at this time and unless things worsen, Seth won't need to follow up again until the spring. We have the option to try surgery again at some point, but don't feel ready to travel that path again just yet.

The school year has developed into a very good one for Seth. We met with school faculty in the fall and developed an accommodation plan to help Seth be successful in school. The accommodation plan is much like an IEP, but as Seth attends a private school, they are not required to implement IEP's. Seth's teacher and the team are committed to his success and do a fantastic job of focusing on his strengths, providing encouragement and helping to increase his self-esteem.

We couldn't feel more blessed and are so thankful for the people who support Seth, and in turn support us. The prayers said for Seth and our family, supportive words and acts of kindness from others have left an everlasting imprint on our family. We have seen God's goodness in others and have been strengthened by it.

Goodbye Mohawk

Over the last several weeks, we have been busy trying to get back to our regular lives. Seth continues to heal and is doing very well. He started back to school about a week ago and has been going partial days. Friday was his first full day back and he seems to be tolerating it well. He continues to wear out faster than usual and is still sleeping a bit more than normal, but his stamina is gradually increasing each day. Life certainly does go on, and Saturday felt somewhat symbolic as we headed to the barber and said goodbye to Seth's mohawk. His hair is growing back and although his incision is somewhat more visible with his new haircut, he looks healthy and strong and more adorable than ever. Most importantly, he has remained seizure free.

Seth had his follow up appointment with the neurosurgeon and his incision is healing very well. He continues to have some fluid and swelling on the left side of his head at the surgical site, but we are told this could remain for weeks, even up to a couple of months. Until the swelling resolves, Seth is unable to participate in gym class or any type of sport activities. He is at the point in his recovery when he feels well enough to be more active, and is frustrated by the things he is not permitted to do. Hopefully it won't be too much longer until he can fully participate in activities.

While Seth has been recovering, I have felt like I've been going through a sort of recovery process myself. I have had some difficult days as I have returned to work and back to day to day life. I have struggled to deal with the disappointment from not being able to complete the resection, with no relief from the worry or hyper-vigilance we have lived with for so long. I have mourned for what could have been. While we knew going into it there were no guarantees, we were so hopeful that this was the answer we had been searching for. Today I can say that each day is a little better, each week better than the last. I feel like I am emerging on the other side, and I know that we will be okay.

Back to Reality... Sort Of

Seth was discharged on Thursday and we arrived home late afternoon. He is doing well, but continues to have swelling that we are watching and frequent headaches. He has also continued to experience nausea periodically, so this is affecting his appetite. We are hopeful that over the next couple days we will see marked improvement.

On Friday, we took Seth to pick up Ethan and Aiden from school, and stopped in briefly to visit his class. Our school family has been wonderfully supportive, and his classmates were so happy to see him. Seth felt like a superstar! His classmates had brought in gifts for Seth and he was so overwhelmed  by everything that has been done for him. As his mother, I feel the same way. We have been so blessed and supported by so many through this whole process. It truly does bring comfort and help relieve some of the stress of a difficult situation.

We are all continuing to adjust back into our "normal" life. Our oldest son has exhibited some anger since we've been home and our youngest has been exceedingly upbeat. Tony, Seth and I are still quite tired but have enjoyed a couple nights of better sleep. Seth has shown increased agitation and frustration in some instances and we will continue to help him to deal with these situations, as we all work on getting back to reality.

Surgery #2

Seth went back into surgery yesterday to have his grids removed and then spent the night in the PICU for monitoring. His recovery so far has been better than after the first surgery, with less nausea and pain. In fact, several hours after surgery he was sitting up in bed and playing with Legos.

Today he was moved back to the neuro floor, and as long as he keeps progressing, we expect him to be discharged before the weekend. He is having some swelling on the left side, but not as much as after the first surgery. Pain is being pretty well controlled with medication. Considering this kid has had two brain surgeries in two weeks, I am amazed at his perseverance and recovery. I think we have hit the point where we are all ready to be home, but that is motivation for Seth to continue to do what the doctors recommend so we can get there.