eSpecially Ben

This was written 12 years ago: More than a week ago, my husband noticed that Ben was falling forward. He banged his head badly on one of these occasions. I was away the weekend, but when I came back, Ryan showed me how Ben was drifting forward while sitting in the bathtub. That evening I emailed Ben's teacher to ask her if she had noticed anything. The next day, Ben's teacher called me to say that, in fact, she noticed Ben falling forward often. She and the assistant thought it could be an ear infection. I was able to get Ben in with a pediatrician that afternoon. I prayed it would be an ear infection. But life being what it is, of course, it was not an ear infection. That would have been too easy.  The pediatrician was a doctor whom we had not seen before. She was serious and focused. Ben's ears were fine, but she persisted with questions and was obviously concerned. While we waited in the office, she called Ben's neurologist who recommended an EEG for Ben the next mor...

Pictures ARE worth a thousand words. I tell people about the things Ben can do and I get a blank stare or a polite smile. I know what they are thinking, "Yeah right." Now I have the proof! The photos are current, but these are the same activities Ben was doing pre-seizure, two years ago. Now that he is on the right medication, Ben is back to progressing with his physical abilities. While having seizures and trying to find the right medication, Ben was not attempting any of this climbing. I am also noticing him understanding more of what goes on around him - seeing someone walk in the room with pizza boxes and understanding what is inside. Grandpa asking him to come to him because he will help him out. Ben is responding more quickly to his environment. He pulled his cousin's hair (again) and he understood that he had hurt her. His face showed a reaction that was approriate for seeing someone cry. This is a change from past situations. And even though I d...

Last time I wrote about Ben's seizures, we were increasing a current medicine to see if it would stop the seizures without having adverse effects on Ben. When Ben became a zombie over spring break because of this new dosage, we quickly activated Plan B and started an entirely new medicine. After almost three weeks on this new medicine, Ben is not totally seizure free, but he is having them less frequently and his energy level and personality are back. And to demonstrate that he is feeling 110% - Ben has been repeatedly opening the door to his brothers' room and climbing in bed with Sean. At 11pm. At 11:30pm. And when Ben is told he cannot throw his brother out of bed, he laughs. So Ben is back with almost no seizures, a seemingly good medicine, and he is up to his old antics again - crawling around the house, standing at counters, climbing on beds, chairs and sofas. When Sean tells anyone who will listen how Ben threw him out of his bed twice, I sympathize with Sean an...

I knew the call was coming, but did not expect it to be an anniversary moment. On the drive to Charleston with my mom and sister for what is known as our Annual Girls’ Weekend, this being our second, I got a call from Ben’s neurologist. Last year, while on the 1st Girls’ Weekend (cannot say annual when it is the first, a little pet-peeve of mine from my event planning days) I was first informed of Ben’s seizures. So this call was ill-timed, yet should have been expected, because life is like this – when you are trying to get away from it all, it catches up with you and lays it all in your lap. But I was much more experienced this time. I took the information in stride and made the follow-up appointment for Ben for the next week. With an action plan set up, I was able to file it away for the long weekend. Lucky for us, the neurologist was able to see us immediately because her trip to Japan was canceled due to the earthquake and tsunami – once again one of life’s ironic moments. It al...

I never gave much of an update about what results came from the Video EEG Ben had in January mostly because I will not have all the information until we meet with the neurologist next week. The doctor's initial note to us said Ben had 52 rhythmic bursts during the 24 hour period that we were at the hospital. I have Googled rhythmic bursts and none of it made a lot of sense to me, so I am fine to wait.  Often reading information on the internet leaves me feeling more scared and confused than more informed. Most disconcerting is that the seizures which I describe as the "falling forward seizures" are back again. I can see Ben's energy level and bladder control decreasing. He's already bumped his eye and head several times this week. These are the same things that happened last fall when he started these seizures. It really sucks - I thought we were in the clear. I am unsure what the doctor will do when we see her. Change medication? Call for another EEG? After...

I have wanted to write this story since it happened, but then life got too busy and the emotion of the experience dissipated. As weeks passed, it was like, as my long-time friend, John, used to say, "It's out of the moment." Circumstances over the last month make it important for me to tell the story now because it marks a big change in Ben. Christmas Eve last year , we attended the family service at our church and had an absolute wonderful time. Since I was pregnant with Logan, we have attended services three times at this church - Logan and Sean's baptism and last Christmas. To our credit, before Ben was born, we were active participants and luckily, church members remember us from then. So this year, I had high expectations for the Christmas Eve service. As usual those expectations were thrown out the window as soon as we sat down in our pew. Ben was very noisy, so I took him to the back of the church in his Convaid chair . Using eye gaze, he lead me down the s...

We are at the hospital for Ben's Video EEG. Ben had 20 electrodes glued to his head yesterday around noon. The gauze wrap is supposed to keep him from pulling at the wires. I am supposed to keep him from pulling at the gauze. They ran out of gauze last night after Ben pulled it off for the third time. We cannot leave the room for 24 hours. It is 6:30am and we have a few more hours to go. Ben's 4th gauze wrap is off and staying off. We've both had just a few hours sleep. More about the procedure in the next few days. (And if you are wondering, yes, that is Ben's mad face.)

Since Ben's seizures started last spring, it really has been a long and painful process. Always taking Ben's health for granted, I had no knowledge of seizures or their effect on someone. Ben had been making tremendous progress with his gross motor skills. There is a definite difference since the seizures began and medication started. He seems less motivated to walk holding our hands, use his walker or even try to stand. It could be the medicine makes him sleepy or unmotivated. It is hard to tell. Although we have tried a few different medicines in differing doses, Ben continues to fall forward. This unexpected falling puts a wrench in how Ben spends his day. At school, he can fall out of his walker or while sitting in a chair, hitting his head on the table in front of him. At home, while crawling around, Ben can lose control and hit the floor with his face. He has no control when it happens and cannot put out his hands to stop. When riding his new tryke a few weeks ago, ...

Three months ago when the word "seizure" entered our everyday vocabulary, I knew little about the term. I cannot say that I understand too much more now - there are so many different types. Most everyone thinks about the " grand mal seizures " that come with convulsions, biting the tongue and horrendous side effects. Ben's seizures are commonly known as " silent seizures " or Absence Seizures . Just falling forward marks a seizure for Ben. For Ben, if I understand the information from the neurologist, we need to manage his seizures. This involves finding the correct medication at the right dosage without too many side effects that prevents the seizures from happening. I am not sure how long it should take to figure this all out, but Ben is still having seizures at home and at camp, during therapy or while sitting at home. He has had multiple bumps to the head and just this week, a bad skin scrape after a face plant to the concrete. The doctor is re...

Image taken from Tulane University More than a week ago, my husband noticed that Ben was falling forward. He banged his head badly on one of these occasions. I was away the weekend, but when I came back, Ryan showed me how Ben was drifting forward while sitting in the bathtub. That evening I emailed Ben's teacher to ask her if she had noticed anything. The next day, Ben's teacher called me to say that, in fact, she noticed Ben falling forward often. She and the assistant thought it could be an ear infection. I was able to get Ben in with a pediatrician that afternoon. I prayed it would be an ear infection. But life being what it is, of course it was not an ear infection. That would have been too easy. A curve ball was being sent our way. The pediatrician was a doctor whom we had not seen before. She was serious and focused. Ben's ears were fine, but she persisted with questions and was obviously concerned. While we waited in the office, she called Ben's neurolog...