Happy New Year!

I've had a lot of people asking how Eddy has been doing lately, so I thought it was probably time for a new blog post. I have been avoiding writing an update for the past several months, as I have not wanted to relive the horrible situation that happened with Eddy back in September. It was the worst couple of days of my life, even worse than when Eddy started having seizures over three years ago. But, it's part of Eddy's journey, and he is doing so much better now, so I think I'm finally able to write about it.

After my previous blog post, when I discussed the two small seizures Eddy had had back in July, he was doing great. We chose to forget about it and assume it was a little bump in the road and not to dwell on it. Eddy had a great rest-of-the-summer and was as happy and healthy as can be. We had a fun Labor Day, and Eddy was completely fine. The next day was the first day of school. Eddy seemed ok when he went to bed, but when I tried to wake him up for school, he was very tired and whiny. This wasn't like Eddy. We figured he was coming down with something, and we would let him sleep. He slept past 10 am (which has never happened) then past 11 am, then past noon. I continued to check on him in his bed, and I had the video baby monitor on me the whole time. He was sleeping peacefully, and I didn't want to wake him up. I thought he just needed sleep to fight off whatever he was coming down with. At 12:30, I had our nanny, Marie, take her lunch. Minutes after she left, I looked at the monitor and noticed a funny arm movement. I just thought "Oh no. Please don't tell me that's what I think it is." I bolted upstairs and into Eddy's room, and he was having a tonic clonic (grand mal) seizure. He hadn't had one of these in years. His typical seizure was a tonic seizure, a brief 10-20 second seizure where his arms would stiffen and his face would turn red, and he would come out of it on his own. I grabbed Eddy from his crib and carried him downstairs to the couch. I called Ed, who had just left to teach his accounting class at St. Bonaventure, and told him Eddy was having a bad seizure. He tried to keep me calm, and I tried to remain calm. I assumed the seizure would stop on its own, like all of Eddy's other seizures, including the tonic clonic ones he had had in the past. But it wasn't stopping. And Eddy started acting like he couldn't breathe. I looked at his ribs and they looked like they were going to explode. He started to foam at the mouth. He started to get white blotches all over his body. This had never happened in the past. I told Ed that Eddy was going to die if I didn't do something, and I believed that 100%. I had never in my life been as scared as I was in that moment. We had rectal rescue meds somewhere, but I had only used them once, over two and a half years prior, and I didn't know immediately where they were. By the grace of God, I ran into the dining room and found Eddy's diaper bag, and in the diaper bag were his (probably expired) rescue meds. I immediately ran back to the family room, tore off Eddy's pants and diaper, and administered the rescue meds. His seizure stopped instantly. He peed all over the couch. I didn't care. I just kept repeating "Thank you God, Thank you God." Ed was on his way home at this point, and I called Marie and asked her to come back. I immediately called the neurology office in Rochester and told them what had happened. They said to monitor him, and if he had any more seizures, to take him to the ER. My mom happened to text me right when I was on the phone with the neurology office, and I told her what had happened. She came over immediately. Eddy was sleeping at this point. I just kept thinking "What if I wasn't here? What if Marie was here alone? What if anyone else was here?" I was the only one who knew where the rescue meds were (and even I wasn't 100% sure), and I had never even trained Marie in what to do if Eddy had a seizure because "he didn't have seizures anymore" and I didn't want to worry her. I genuinely think Eddy would have died if I wasn't home, and that is why I haven't been able to think about it. I couldn't handle the thought and I still can't. I am just incredibly thankful I saw it when I did, that I responded, and that the seizure stopped.

I was praying this seizure would be the only one, but about an hour later, Eddy started having another grand mal seizure. He had been sleeping and my mom was holding him. We literally ran out of the house, me carrying Eddy, my mom with no shoes on, and we drove to the ER. I didn't want to wait for an ambulance after seeing what I had seen an hour before. I couldn't give him more rescue meds, and I just kept thinking "What if this one doesn't stop either?" I was absolutely terrified. The girls were awake from their nap at this point, and they saw us running out of the house with Eddy. They had no idea what was going on, but they were terrified too. I couldn't believe we were going through this again. We had the girls now. Eddy was fine. He didn't have seizures anymore. This wasn't happening. This wasn't happening.

At the ER, Eddy's seizure stopped on its own, but he had another one. And then another. And another. I lost count after he had about six seizures. We were in contact with Rochester, and they were sending an ambulance for him to be transferred. I knew we would be in the hospital for at least a day or two, so I drove home to pack as the ambulance was coming to pick up Eddy. I felt so sick to my stomach and didn't think I could handle this. As hard as it was when Eddy was a baby and first started having seizures, this was 100 times harder. Eddy was older now and understood more. He was more afraid. I knew Eddy more. Eddy was my boy. He was my baby. And I didn't have to worry about just Eddy, but I also had to worry about the girls. When I came home to pack, the girls ran to me, sobbing. They knew something was going on and they were afraid. I hid my suitcase from them, but when I tried to walk out the door again, back to the hospital, they screamed and cried and grabbed my leg and said "no mommy". It took every ounce of my strength not to break down in front of them.

I rode in the ambulance with Eddy, and Ed followed in his car. We had to go to the ER at Strong in Rochester before we could be admitted. We waited and waited and waited. Ed graciously allowed me to leave the hospital and stay at my cousin Laura and her husband Trevor's house near the hospital. It was 11 pm and he knew I wasn't able to deal anymore. I just couldn't. After seeing Eddy almost die when I was by myself, and seeing all of his other seizures, and having the girls sob, knowing I was leaving to go to the hospital again when it was the absolute last place on earth I wanted to go, I just couldn't handle anymore. I just couldn't. I thought before this happened that I was a strong person, but at this moment I wasn't strong. I couldn't handle anything else.

So I am very thankful that when I walked in my cousin's house, Trevor, her husband, handed me a glass of wine, and I just broke down and cried and talked to him and he refilled my wine and finally, I was a little better. Thank you, Trevor, for your help that night.

The seizures were obviously horrible, but just as horrible was the fact that Eddy was completely incoherent and lethargic at this point. He was not responding. I was sure he had brain damage. He wouldn't even lift a finger for his iPad, which, anyone who knows Eddy, knows that he's obsessed with. I was so scared he had brain damage and I'd never see his smile again.

The next day, Eddy was still very much out of it, and he had some seizures in the night and morning. But as the day went on, he started responding a very tiny bit when we handed him his iPad, and by the evening, he was trying to play with his letters and his iPad. I again just kept repeating, "Thank you, God." Eddy is delayed but he has such a strong personality normally. He is smart and sweet and when he looks me in my eyes, I know that he understands everything I'm saying. During these two days, he was just not present. It was so, so scary.

We had been weaning Eddy off of his last seizure med, Keppra, because he was still (is still) on the ketogenic diet, and we didn't think he needed seizures meds anymore. He was on such a small dose at the time of his seizure (1/2 tablet once a day) that it was basically like being on nothing. The last time we weaned him off of his Keppra (2.5 years ago, the same week we started the ketogenic diet), he also had a lot of seizures. So, at this point we know Eddy needs to be on a small dose of Keppra. We increased his dosage to 1 tablet in the morning and 1 tablet in the evening, and after that second day in the hospital, his seizures stopped again. And he has not had any since that day in early September. Thank you, God.

The timing of seizures is never great, but this timing was really not great. One week before, I had gone back to teaching, part-time, one math class at St. Bonaventure University. This was the first time in over 4 years (since I was pregnant with Eddy and teaching math at Olean High School) that I had been in the classroom. Why did I decide to go back now? Because Eddy was fine and the twins were fine and life was finally somewhat "normal". I just couldn't believe that after 4 years of not teaching and after 2.5 years of no seizures (other than those two small ones in July), this was happening. I had to cancel class the second week of school because I was in the hospital. It just seemed so ironic.

But, praise God, Eddy has been seizure-free since leaving the hospital that day in September, after we had been there for two days. As soon as we got home, I saw the first smile I had seen from Eddy in over 50 hours. Eddy is a very smiley kid, and this was the longest I can remember going without seeing a smile from him. He continued to be whiny and unhappy for about a month. And it was so sad because he couldn't tell me what was bothering him. I didn't know what was wrong, but something was. But, thankfully, for the past couple of months, Eddy has been back to the healthy, happy, smiley, sweet boy that we are used to.

And he is making SO much progress. Last May, when we were in his CSE meeting and discussing objectives for the coming year, one of the occupational therapy goals we wanted was for Eddy to be able to drink out of a sippy cup instead of a bottle, and not to have to lie down on a pillow to drink his milk/water every day. Eddy's low muscle tone makes it difficult for him to hold his arms up for an extended period of time, which is necessary to hold a cup and drink while sitting up. With the ketogenic diet, Eddy has to drink a lot of water. And it was taking up a large part of his day. And every time we went anywhere, out to dinner, etc., we would have to find a place for Eddy to lie down to drink and watch his movies. (Eddy would only drink his milk/water while watching his movies. He's a smart kid and he knew it was one thing he could control.) Well, at the beginning of the summer, right before Eddy turned 4, he started drinking out of a sippy cup (I had never been so happy to recycle bottles as I was at this point.) Then, in July, for Eddy's 4th birthday, my cousin Jamie and her husband bought Eddy an adorable chair, and unbeknownst to them when they bought it, this was going to help transition Eddy from lying down on his pillows to sitting up with drinking his milk. It was hard for him at first, and he would end up in a very-reclined (basically lying down) position in his chair by the time he was done drinking. But in the past couple of months, he has made a lot of progress and has been able to drink sitting up. And, in the past week, Eddy has been drinking his milk standing up! The day after Christmas, we handed Eddy his milk and told him to go sit in his chair, as we do every day. (And Eddy normally goes to sit in his chair - he is following directions and is able to walk backwards and sit down in a chair - both huge, huge things for Eddy!!) We got distracted for a few minutes, and when I checked on Eddy, he was standing up, playing with his iPad, and his milk was gone! We couldn't believe it! He went from only drinking out of a bottle and having to be lying down, watching his movies just six short months ago, to drinking out of a sippy cup and standing up, playing with his iPad, holding his arms up for an extended period of time. And for the past three days, Eddy has drank all of his milk and water (breakfast, lunch, dinner, and evening snack) standing up! Until you have to coordinate finding a place for your child to lie down while being able to watch YouTube videos for every meal, every time you go anywhere, you don't realize how significant this is! Eddy is getting stronger every day, and we are so proud of him.

Other progress he has made in the past several months is that he can now climb the stairs without us touching him at all, and he can scooch down the stairs completely independently. (He just needs our hand to help him sit down on the first step.) He is using the GoTalk App on his iPad to tell us what songs he wants to sing, what he wants as reinforcement when he does a good job working with us. (Almost always he will choose his iPad, letters toy, or singing a song). He can count to 20 on his iPad, he can spell Eddy Bysiek on the keyboard, he can turn off his light when we tell him to, he can sit in his chair when we tell him to, and he is getting better at spelling new words every day. His walking is getting so much better, and he can navigate around obstacles (i.e. his sisters' millions of stuffed animals and toys) without falling. He is so much more alert and aware, and best of all, he's back to being SO happy. He's just such an incredible blessing.

Life is really good right now. I love teaching at St. Bonaventure, Ed's business is doing great, and the girls are doing so well. They love Eddy and are so good to him and have been so good for him. We are incredibly thankful, and we know that 2016 is going to be an amazing year. Thank you so much for your prayers that week in September, and every day. We are so happy that so many people love our boy like we love him. Please continue to pray for him.

A little more background about Eddy

One thing that I did not mention in the previous post is that Eddy has a developmental delay. It isn't severe as far as some developmental delays go, but it is important to note because this makes his "seizure disorder" all the more worrisome. Also, it doesn't really make any sense, in that there was nothing really "out of the ordinary" about my pregnancy, birth, or the beginning of Eddy's life.

Eddy was full-term, actually born on my due date. The birth was easy (And by "easy" I mean not easy at all, but as far as birthing goes, I'm told that pushing for twenty minutes for baby #1 is not a "difficult" labor.) We were out of the hospital a day and a half after giving birth, Eddy was a good eater (although not a good breast feeder), he smiled within the "normal" time frame, he rolled over when he was "supposed to." It wasn't until he was six months old that we started getting concerned because he wasn't close to sitting up on his own yet. Everyone told us the typical "every baby is different, don't worry, he'll get there" thing, which is probably what I would tell someone also...but then seven months came and Eddy still wasn't sitting up, eight months came, and he wasn't sitting up or babbling. Finally at nine months, Eddy was able to sit up independently, but by this time we were super worried. He also wasn't babbling or imitating and physically the only thing he could do was roll around and sit up if he was put in a sitting position. At his nine month check-up I voiced my concerns to his pediatrician, and he said he was also concerned and referred us to Early Intervention. Eddy was evaluated when he was almost ten months old, and it was determined that he qualified for physical, occupational, and speech therapy. Therapy started a couple weeks later (physical therapy twice a week and speech and occupational therapy once a week), and Eddy started slowly progressing. All of his therapists agreed Eddy was "bright" and quite unique, in that it didn't make any sense that he was delayed. He had a stay-at-home mom who worked with him constantly, both of his parents were at the top of their classes academically...Eddy "should be" really smart.

The general consensus was that, with a little therapy, Eddy would "catch up" in his own time frame. They also thought he might have some sensory issues because he wouldn't drink anything cold (including water, until he was about twelve months old!), he wouldn't sit in the grass without freaking out because he didn't like the way it felt, and he didn’t like touching any "slimy" foods like cooked apples or carrots. His demeanor, though, was great, as long as he didn't have to do anything he didn't want to do (which probably applies to 99% of babies, right?). We could take him out to a restaurant and he would sit quietly playing with his toys, smiling at everyone who talked to him. His personality is very sweet, chill, friendly, and social. So, even though he was "delayed" and we were worried, we were enjoying our boy and were optimistic that he would catch up with therapy.

But then, the day before his first birthday, he had a seizure. And the first thing I thought of after "Oh my gosh, he's having a seizure" was "There is something wrong...and it's much bigger than a delay." When we talked to the neurologist and said that Eddy was developmentally delayed, he became much more concerned about the seizure. If you have a delay AND a seizure disorder, there is a good chance that something major is causing it. The three "main areas" that would cause the problem are neurological (something is wrong with the brain), metabolic (I'm not going to pretend to understand metabolic disorders), and genetic (birth defects/something you're born with). After getting a normal MRI, we were able to cancel out any "neurological" underlying causes, for the most part. After getting the normal metabolic bloodwork results, we were able to scratch the "metabolic disorders" off the list (again, for the most part...there's always some strange, rare thing they could miss with the basic tests.) So then, we were left with a genetic cause. And I did tons of research and completely convinced myself that Eddy has a genetic disorder. I was a wreck and couldn't sleep or eat or do anything for a week straight because I was SURE that Eddy had a genetic disorder (The only positive thing that came from all of this is that I lost ten pounds and could finally fit back into all of my old clothes. Probably not the healthiest way to go about it, but I'll take it nonetheless. )

I called the pediatric neurology office (again) to see if they could refer us to genetics, and they did, but we weren't able to get an appointment until November. This was not going to be good enough for me. So, in our many hospital visits, I asked every single doctor I talked to (and there were several!) if they could help move up our genetics appointment. (One thing I've discovered throughout this experience is that there is ALWAYS an earlier appointment, if you're persistent enough.) Almost all of them said, “Sorry, can’t help you with that, not my department,” but one, nice young female resident said, “I’ll call genetics, give them your story, and see what I can do.” We were discharged from the hospital that day so I wasn’t sure if it would go anywhere, but I was just happy she tried.

The following week, when we were back in the hospital, I asked yet another doctor, this time the pediatric neurologist on call, Dr. Langan.  Immediately he said, “Sure, we’ll call genetics and have them come see you here in the hospital on Monday for a consultation.” (I knew it was that easy if we found the right guy!) But we left the hospital Saturday due to my husband getting sick, and we were back to square one for the genetics appointment. Finally, last week, I tried calling the genetics office again, and I left a message (in which I may have started crying.) Well, an hour later I got a phone call back from the genetics secretary who said, “Can you come in tomorrow?”  and of course I answered, “Yes!”

So the genetics appointment was last Thursday. During the appointment we finally got the results of Eddy’s Fragile X test (from about 4-5 weeks earlier) back, and luckily this was negative. They took more bloodwork from Eddy for a DNA microarray, which will basically determine if he has a genetic disorder or not. The genetics doctor, Dr. Robinson, was very helpful and kind, and he is going to personally call us next week to give us the results of the test. So right now we are anxiously and very nervously waiting for these results.

Something strangely positive has been happening since Eddy started getting seizures – his development has improved by leaps and bounds. In the past month, he has started army crawling like a champ and can now easily get anywhere. He is much better at transitioning from sitting to on his tummy, and has gotten himself to a sitting position independently on several occasions (and is sooo close on every other occasion). He is making much more sounds, and has said “mama” a few times! I swear he also said “up” but my husband doesn’t believe me on that one.

In the past week and a half alone (since we got home from the hospital and he started the Klonopin), Eddy’s development has made the biggest strides yet. Last week, I saw Eddy army crawling towards the couch like he was on a mission. I ran in the other room to grab my camera, and by the time I got back to the living room, Eddy was standing up at the couch by himself! He had never even expressed interest in pulling himself to stand, so I was crying (this time happy tears!) and throwing him up in the air. He probably thought his mommy went crazy.

Also, he has started to crawl on his hands and knees!  He can only get a few “steps” as of now, but last week he wasn’t even trying to! Another great accomplishment is that yesterday he started clapping, something we have been trying to teach him for 6 months now! I don’t know if it’s the Klonopin, the Keppra, just the normal time-frame of his development, God answering our prayers, or all of the above, but we are definitely uplifted and encouraged. I really do believe that God is part of this experience, and I know that through Him all things are possible. God has given us the gift of an amazing little boy who has already taught us so much. No matter what the future holds with Eddy, we will continue to love, encourage, guide, and support him in everything he does.

From the begining...July 27th to today

The other day, my lovely cousin Laura called me from Costa Rica, and amidst the conversation, she suggested that I start a blog. She said that with everything going on with Eddy, it would be a helpful venue to let everyone know how Eddy was doing, and also blogging might be “therapeutic” for me. At the time I was such a wreck and could barely start a load of laundry without crying, so my initial reaction was “no way, I have no time or energy to do that,” but as the week went on and I thought about it more, I decided that, yes, I could start a blog, and, yes, it might indeed be helpful (for me and others) to write down everything that is going on.

So here I am. In this first “edition” (What do they call each separate entry in a blog? Post? Entry?), I’m just going to give you the run-down of what we’ve been going through with Eddy and his seizures…

The day before Eddy’s first birthday (July 27^th), he had his first seizure. We were sleeping in my bed (when Eddy wakes up around 4 or 5 in the morning, we bring him in bed with us to get some more sleep), and I had just woken up. I thought Eddy was about to stir, so I was watching him. Instead of waking up, though, Eddy started shaking/shivering, and then his eyes rolled to the back of his head. This lasted for about a minute, and immediately I knew that Eddy was having a seizure. Obviously, I freaked out and called Ed (my husband), and he rushed home from the bank, where he was taking out a check for our house (oh yeah, we were about to move to a new home in a few days!) Within 15 minutes of Eddy having his seizure, we were at the ER of Olean General Hospital. After lots of tests and a CT scan (which was normal), it was determined that Eddy had a tonic/clonic seizure (or grand mal seizure) and he was being taken by ambulance to Children’s Hospital of Buffalo. At the hospital, they basically said, “We don’t know why Eddy had the seizure, and we don’t start medication until at least the second seizure, so we are going to send you home and have you monitor him.” Eddy was back to himself and didn’t seem sick at all, and although we were terrified of what had happened, we took him home and tried to move on.

Things were “back to normal” for about two and a half weeks. Then, on August 13, Eddy had a second grand mal seizure. This one was also in the morning, around 6:20 am, but it was much worse than the first. It lasted between four and five minutes, and with Eddy still seizing, we ran out of the house, jumped in the car, and I held him on the way to the hospital (I know, not safe, but I was more worried about my baby having a seizure at the time!) I didn’t even grab my purse, or the diaper bag, and Ed and I were both in our pajamas. At the hospital, I immediately said that we wanted to be transported by ambulance to Children’s (because last time we wasted a good six hours in the Olean ER before they sent us to Children’s), and they said they would get him in an ambulance as soon as possible but first they had to make sure he was stable. It turns out Eddy’s oxygen was pretty low, and as they put an oxygen mask on my little man, I just sobbed and sobbed and wondered why the heck my sweet baby boy had to go through all of this. The ER doctor was great, and he had Eddy and me in an ambulance on the way to Children’s within an hour. At Children’s, we met with a pediatric neurologist (who we actually had an appointment with the following day about Eddy’s first seizure but this kind of took that appointment’s place). Luckily, Ed and I had remembered to take a video of Eddy’s seizure this time (as we were instructed to at our first ER visit), and the doctor immediately said that Eddy had a grand mal seizure and needed to be put on seizure medication. At this point it was determined that Eddy had a “seizure disorder” but we had no idea what the cause was. He was put on the lowest dose of Keppra (1 ml, twice a day), and we were sent home.

So we go home from the hospital with our sweet, happy, seemingly healthy little 12 and a half month old boy, but now we’re extremely worried because our “healthy” little boy has been diagnosed with a seizure disorder. At this point, I turn into “crazy advocate mommy”, calling the pediatric neurology office almost daily, doing an insane amount of internet research (which is not ideal, as you probably know), and staring at my baby when he is sleeping constantly (because both seizures happened when he was sleeping). Eddy also started the gamut of testing that would hopefully shed some light on what the heck was going on with him. In mid-August he had an EEG (which was normal, but basically that just means he didn’t have a seizure in the hour he was hooked up to the monitors), an MRI, which he had to be sedated for, and lots of bloodwork to test for metabolic disorders. The MRI turned out to be normal, which was great because that meant that there were no “structural” problems with Eddy’s brain (like layers that did not form correctly, etc.) It took several weeks to get the metabolic bloodwork results back, but thankfully, that, too, came back normal.

Two and a half weeks after his second seizure, Eddy had yet another seizure. Except this time, it was 9:15 at night, Eddy had just fallen asleep, and the seizure was different from the previous two. Instead of him shaking and his eyes rolling to the back of his head, he just sat up in bed, became very rigid, and his eyes opened really widely. The whole thing only lasted about 5-10 seconds, but Eddy was completely out of it for at least twenty minutes. We called the pediatric neurology office and they paged the neurologist on call, who said that because it was a different kind of seizure, we should call an ambulance. At the ER in Olean, Eddy had two more of these “seizures,” but they only lasted a few seconds each. We knew that Eddy was going to be taken to Buffalo Children’s again (and we wanted him to be admitted so that they could do a long-term EEG), but we had quite the surprise when the Mercy Flight crew showed up to take Eddy off in the helicopter. As you can probably imagine, I was not a happy mother at that point. 1.) The ER Doctor did not ask Ed or I if we wanted Eddy to go in the helicopter, nor did he even mention he was going to. 2.) I could not ride with Eddy and I was so worried that he would be tramautized for life if he woke up and found himself without anyone he knew flying in a loud helicopter. 3.) Eddy was stable at this point, just sleeping because it was 1 am, and he absolutely did not need to be taken by helicopter! But after voicing our concerns to the ER doctor, he said that he would cancel the helicopter and call the ambulance from Children’s, but we would have to wait several more hours for them to even get there. So we decided to let Eddy go by himself in the helicopter and we left the hospital to get a head start up there. As I was driving, I looked in the sky and saw the helicopter that my baby was in flying ahead of us and just sobbed, unable to understand why any of this was happening.

At 6 am, Eddy was finally admitted to the 8^th floor of the hospital and hooked up to a long-term EEG monitor. Ed and I stayed with him in the hospital and slept in the horrible pull out “bed chairs.” After Eddy was hooked up to the monitors for about 24 hours, he had another grand mal seizure when he was napping in the chair with me around 9:30 in the morning. After he was taken off the EEG monitors, after about 30 hours, the neurologist on call (along with all of the neurology residents…because it’s a teaching hospital, there’s always a cohort of doctors in the room) said that, other than the brief grand mal seizure (which lasted two minutes according to Eddy’s brain waves on the EEG), everything else “looked great.” She said that Eddy’s brain waves seemed to be ok, and once we figured out the correct dosage/seizure medication, she was confident that he would be just fine. Obviously, this was comforting to hear, and we hoped it was true, but we were still very worried.

The next morning, we met Eddy’s new neurologist, Dr. Weinstock, who is extremely respected, accredited, and experienced as a pediatric neurologist. He is kind of the “guru” for pediatric seizures at Buffalo Children’s, and we were very lucky that he was now Eddy’s neurologist. At our first meeting, Dr. Weinstock said that he studied Eddy’s EEG results, and most of the EEG looked normal, but because he had another seizure, we had to increase the dosage of his Keppra to more than double what he was currently taking. He also mentioned that he saw something very brief on the EEG, and he wasn't sure exactly what it was, but we would keep an eye on it. That afternoon, which was Saturday, Eddy was discharged from the hospital after three long days.

At home, Ed and I were on edge. We hated being in the hospital and didn’t want to have to go back. We didn’t know if Eddy’s seizure medication increase would help, and we hated not knowing if he was going to have a seizure. At this point, he was sleeping in our bed full-time (and he was pretty much the only one sleeping.) For the past several weeks, when Eddy was sleeping, he would be very restless…twitchy, tossing and turning, jerking, flailing. It was unnerving and it had definitely gotten much worse since the seizures started. Every night I would watch him twitching and know that that had something to do with seizures. I had read about “infantile spasms,” which are horrible seizures that typically start in smaller babies, 3 months to 8 months, and if they cannot be stopped, they have horrible consequences (mental retardation is what jumped out to me in all of the countless websites I read about them.). I continued calling the pediatric neurology office, and I sent a couple of videos that I took of Eddy twitching to a neurology nurse, but she seemed to think it was “typical baby behavior.” I read in a lot of places that it’s normal for babies and toddlers to twitch in their sleep because the central nervous system is developing. This didn’t seem normal though.

The following Wednesday, September 5, (so now we’re almost up to present day! Bear with me, I’m almost done. J ) Eddy had another grand mal seizure and we were back in the hospital for another long-term EEG. After about 48 hours hooked up to the monitors, (and four tonic seizures, which are short, sudden seizures where his body goes rigid), it was determined that Eddy’s seizure activity was starting to look like infantile spasms. Because we had done so much research, and knew how devastating these seizures could be, I burst into tears as soon as I heard the words “infantile spasms.” It was decided by the whole team of pediatric neurologists that Eddy would start on ACTH the following day. ACTH is an extreme intense steroid treatment where Eddy would be given shots of steroids every day. After reading all of the side effects that commonly occur with ACTH (and serious side effects are quite common), we were so nervous and did not want to start Eddy on this treatment,  but if all of the pediatric neurologists at Buffalo Children’s Hospital agreed that this was the best course of action, we were not going to question them. They did tons of testing to make sure Eddy was healthy because the treatment was going to suppress his immune system and any infection that was already in his system could kill him. After lots of bloodwork, neurologists looking in his ears to make sure he didn’t have an ear infection, a chest xray, and a catheter insertion for a urine culture, Eddy was determined to be “healthy” (other than, of course, having seizures and infantile spasms). Shortly before they were going to start the treatment, my husband, Ed, started to feel really sick and quickly got a 101.5 degree fever. Everything was put on hold because he had had contact with Eddy that morning, and just in case he had transferred it to Eddy, we had to wait to again make sure Eddy was healthy.

So that leads us to present day. We have been home from the hospital for a week and a half now, and Eddy has not had a seizure since we left the hospital. He was put on another drug, Klonopin, to help lessen his infantile spasms (which, again, only happen when he is sleeping and just look like a quick startle reflex.) He is sleeping much more soundly for the most part, although he still has some "twitches" in his sleep. Klonopin doesn’t actually cure infantile spasms so we are trying not to get our hopes up that he no longer has them, but we are cautiously, and optimistically, waiting on his next long-term EEG, which will be in two weeks. If his infantile spasms are better, it really will be a miracle.  So all we can do now is wait and pray.

We always knew we had great people in our lives, but this experience has showed us just how wonderful our friends and family are. We are overwhelmed by the support, concern, love, and thoughtfulness shown to Eddy and us. Thank you so much. We know this is probably going to be a long, stressful road, but we will be able to get through it with everyone’s prayers. I know that God is listening to them.