Eddy in Kindergarten

I can't believe it's been ten months since I've written a post; it feels like yesterday. I've been wanting to write for several months now, but it's more nuanced to pen "normal' life than it is to write about sickness and hospital stays. Since my last post on New Years Day, Eddy has had more seizures, but they were last February, nine months ago, and he had pneumonia. So, at least there was a clear-cut reason, unlike the seizures that occurred last September. His seizures in February were similar to the ones that he had in September; they were horrible tonic-clonic (grand mal) seizures that required a rescue seizure drug to stop. An ambulance was called and we were in the ER for an evening. But luckily he improved, and thank God, he has been seizure free for the past nine months.

 Right now, Eddy is doing SO well. He started kindergarten in an inclusive classroom in September. It was a stressful spring and early summer, knowing there was a transition that had to occur now that Eddy was almost school-age (He turned 5 in July!). My Masters degree is in Inclusion (Advanced Inclusive Processes), and I know and understand the benefits of inclusion, not just for Eddy but for everyone in his class. It's so important for kids to see diversity, differences, and special needs at a young age. Kids are kind and compassionate and understanding when they're 5; this isn't the case as much, unfortunately, when they're 10. But if kids see differences at a young age, and when they learn that differences are "normal," they will be less likely to bully and more likely to include these kids when they're older. Inclusion is also hugely beneficial for the student with special needs. So much research has shown that when students are held to high standards, they will be more likely to achieve growth and success. I could go on and on about the benefits of inclusion, but suffice it to say that I was very determined to do everything I could do to get Eddy into an inclusive kindergarten class. I am very thankful for a couple of my grad professors from St. Bonaventure, whom I met with before any of the meetings with Eddy's school, and who encouraged me to push for inclusion. I was confident that Ed and I were making the right decision when we met with the principal and Director of Special Education, and later when we met with the whole CSE team (for over six hours!). So when it was finally decided that Eddy was going to be in an inclusive kindergarten, with all of the supports in place (including speech, occupational, and physical therapy, a one-on-one aide, and a pull-out resource room time at the end of the day), we felt incredibly relieved, but nervous for him to actually start school.

When September rolled around, we became more and more nervous, but on the first day of school, when we got Eddy off of the van, he had the biggest, most alert smile that I had ever seen from him. I could tell how happy he was. And he's only gotten happier. Eddy loves school. Eddy loves his one-on-one aide, Kiki. Eddy loves his teacher and his special education teacher and everyone at his school. Eddy is one of the most popular kids in his class. During our first team meeting a few weeks ago, when his teacher told us that Eddy is the best behavioral incentive because when classmates are really good, they get to sit with him during math circle time or during lunch, I started crying. When Ed and I met his class at Allegany State Park for a field trip last Friday and we were able to see first hand how much his classmates love him, and how they sing him the ABC song because they know he loves the alphabet, I started crying. It is so incredibly refreshing to see compassion and love from 5 year olds, especially when that compassion and love is directed at your nonverbal child with autism. I am 100% sure that we made the right decision by sending Eddy to our home district, in an inclusive classroom. We are so thankful that the school has been so accommodating and helpful. To see others love your child results in a happiness that is indescribable.

Before having Eddy, when I saw a mom or dad with a kid who had special needs, I would feel sorry for them. Not consciously, but subconsciously, and I think a lot of people do that. I don't know the situations of everyone else, but I can tell you with complete sincerity, you do NOT need to feel sorry for us. We are the luckiest parents on earth to be able to parent Eddy Bysiek. This kid is incredible. He is absolutely the sweetest person I have ever met, and I honestly don't know how we got so lucky.

We still pray every day that he will talk, and we want to bring him more into our world, but we are so thankful for the exact little boy that he is. I think that a lot of acceptance has occurred in the past year. Eddy has made it awfully easy, as such a happy, loving, sweet boy. Our daily life is still a lot more complicated than we ever thought it would be, from Eddy's ketogenic diet where everything is measured to the tenth of a gram, to the vast supplements that we have to make sure he gets every day to keep him healthy, but it has become our "normal," and if it means Eddy is healthy and happy, we will do it a million times over.

To say that Eddy is a joy is an understatement. Eddy is the happiest little boy I've ever seen. He is all smiles. He is all love. He is all joy. He is an incredible blessing. He's the purest definition of innocence and love that I've ever come in contact with. In a time of bitterness and strife and divisiveness, where Americans are fueding and arguing and bullying, Eddy is the definition of love and kindness and everything that is good in the world. Every morning, he wakes up with a smile, and every evening, he goes to bed with a smile. I just can't believe how lucky I am to be his mom.

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.