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.

Not What We Had Hoped For

I have given some thought to the post I would write when Seth had a seizure and we could move forward with the surgical resection. I have imagined the collective cheer from all those who have followed our journey and prayed for us and thought about the relief we would feel. Sadly, I will not be writing that post. After 14 days, Seth has not had a seizure and we are unable to complete the resection at this time. 

After meeting with Seth's neurologist and neurosurgeon, we have made the extremely difficult decision to have the grids removed. Seth will go into surgery tomorrow to have the grids removed and should be ready for discharge later this week. While Seth is still tolerating the grids fairly well and we could potentially wait another week, the chances that he will have a seizure at this point are very low. We have agonized over this decision and have decided this is the right thing to do for Seth at this moment. While I am sad and so very disappointed, I know that we did everything possible to try to induce a seizure, things that have worked for Seth in the past. I don't understand why these methods didn't work this time, but I have to believe that it was just not the right time. For now, we will allow Seth to heal, grieve what we could not achieve and when the time is right, we will consider the options and whether a second try at surgery is in Seth's future. 

No News is Not Good News

And still we wait... It seems that everyone here is surprised Seth has still not had a seizure. His EEG continues to show lots of irritability, but nothing has developed fully into a seizure. We are going to try a couple more nights of sleep deprivation to see if that produces desired results, but with each passing minute without a seizure, hope fades a little more.

Seth has done amazingly well through all of this. He continues to be cooperative and has remained his usual easygoing self for the most part. He did start leaking some fluid yesterday, so we are keeping a close eye on this as this could become an infection risk. If the leakage continues, they may go in and drain off some of the fluid that has accumulated.

It has been hard to want something so badly for Seth and to be so close, but yet unable to get there. I suppose I have started grieving a bit for what might not be. Nothing has been lost on this attempt, as we can still come back and try again at another time, although none of us wants to have to do so. While I don't feel ready to throw in the towel quite yet, I know we are nearing the time when a decision will need to be made.