I was 20 years old and planning my wedding when I found out I was pregnant. Being young and focusing all my extra time on wedding planning, when I wasn’t working, I was shocked to say the least, especially since we were using protection. However, being a mother was always in my future, so I embraced it.
My pregnancy was normal and I fell in love with our first son, the moment I knew he was in there. At 38 weeks, my OB wanted to induce my labour as I was young, it was my first baby and he felt the baby was measuring quite large. So, on December 8th 2005, my husband and I walked into the hospital and were both nervous and excited to become parents.
With being induced the pain of labour was brought on very quickly, so I had an epidural. Once I was able to get comfortable, I had a little nap and everything was great. Until it wasn’t. I woke up in extreme pain so the nurse told me to push. I did what she wanted me to do, I pushed. She then decided a few moment later that she should check me and low and behold, my son’s head had popped out. Yeah! No. The nurse pushed my son’s head back in and held it there, while another nurse ran to get the doctor. During this time, I’m telling her to let go, to deliver my baby. She kept repeating to me that she “couldn’t because the doctor wasn’t in the room.” Needless to say, this made me confused and angry. Not only was she putting my new baby at risk, but the pain I was in, was nothing I had ever felt before. When the doctor finally came into the room, he told the nurse to let go, and he caught my son. The nurses carried him quickly to the baby incubator in the corner of the room and proceeded to do their monitoring and tests on him. I saw a little oxygen mask come out so I asked what was happening. I had yet to hear him cry. A nurse turned to me and said, he had swallowed some of his poop so they were giving him oxygen. I finally heard him cry. What an amazing sound. A nurse wrapped him up and gave him to me and I finally got to hold my new baby boy. He weighed 7lbs 14oz. His APGAR scores were 9 & 9.
When he was handed to me, I kissed his forehead and told him that I loved him. Then, I started to notice he was becoming more reddish orange, as he laid in my arms sleeping. I asked the nurse why he was so orange looking and she told me “he was a little jaundice but no need to worry, but when you get home, just sit in front of a sunny window and it will go away.” I proceeded to look him over, what else was on his body that they weren’t telling me? I noticed he had a very large bruise on the back of his head. When I asked the nurse why he had the bruise, she said, “because he came down the birth canal so fast.” He had some little birth marks, known as stork bites on his head and neck and everything else, seemed normal. I tried to breastfeed Dylan and I struggled a lot. Between him not waking up to eat and seeming to have difficulty latching on, after two months of constant struggle, I started giving him formula. I put a lot of blame on myself, I was a new mom, a young mom and I didn’t know what to do. I don’t believe I ever reached post-partum depression, I just thought things would have come more naturally for me. Dylan slept all the time. The only time I could get him to wake was for a bottle, but then would fall back to sleep with a bottle in his mouth. I had mentioned my concerns to my OB and my GP and both told me it was normal. Some babies like to sleep more than others.
I started to notice when Dylan was around 6 months, he was staying awake longer, becoming more interactive, smiling, reaching for his toes, putting his toes in his mouth, rolling around, babbling, occasionally staring off but he was quite happy just being a happy little boy. At his 6 months well baby check up, I told my GP that my only concern was, Dylan wasn’t crawling. He was showing no signs of movement. We have a niece that is only 3 weeks older than our son, so we were seeing her do things and Dylan was no where near her progress. My GP told me, that some babies are a little slower at developing than others, but not to worry. Also, she said that Dylan was a boy and boys are slower. She told me if things were still a concern at 12 months, then to let her know and she would start the progress to a pediatrician. Things didn’t progress much more at his 12 months check up so my GP referred Dylan to a pediatrician. I knew something wasn’t right, so I was happy that my GP was finally listening to me.
Dylan was approx. 13 months old when he first seen a pediatrician. The pediatrician ordered blood work, urine work, a CT scan (not sure what that was supposed to do, but I played along) and everything came back “normal.” The pediatrician told me I had a prefect, healthy baby boy and he was just delayed. I agreed with him, that he was health and prefect but I felt there was something more to my son. He told me there was nothing more that he could do for my son. So, I went back to my GP and told her I wanted a second opinion. She sent me another pediatrician, whom Dylan still sees today and she was amazing. Dylan started seeing her at approx. 18 months old. She ordered new blood work and referred Dylan to a special development pediatric pediatrician for some further answers. (In Canada, especially Ontario, referrals take approximately 6-12 months before you are seen, just to give you some time line and perhaps understand some of my frustrations. During this time also, we hired an occupational therapist to work with Dylan, as the wait time was 12-18 months long.) The appointment to see this special pediatrician was very quick and as she’s watching Dylan play, watching him continuously spin a wheel on an upside-down truck, she begins interacting with him. He looks at her and smiles and babbles. She turned to my husband and I and said, “Your son is the first child that I have ever seen and I don’t know what’s wrong with them. He’s not autistic. But I’m going to call Sick Kids Metabolic and Genetics right now.” And she did. She called the department right in front of us, asked us when we could go to Sick kids and made us the appointment right there. It felt liberating that perhaps we could finally have answers for our son.
At around the age of 19 months old, Dylan started using some words. We were happy that things seemed to be finally developing and moving forward. He still wasn’t walking on his own, however, with the help of community support, we were able to get a physiotherapist involved to help Dylan gain the goal of walking. He was placed into AFO’s, to help give his feet some structure as he seemed to have little rounded, meaty feet. During this time as well, I was expecting our second child. It was nice to see Dylan understanding that mommy had a baby in her belly, as he would rub my belly and say “baby” at the same time. Anytime we snuggled, he would rest his ear against my belly to “hear the baby.” It was nice to see the bond of older brother and baby sister grow especially when she was born. He was the happiest big brother ever. It was amazing to see. Dylan was 25 months old, when our daughter was born. The family struggles from myside of the family weren’t the easiest, everyone has an opinion on what you should be doing, though they don’t understand what it is you go through on a daily basis.
The wait to go to Sick Kids was only a few shorts months wait. When Dylan was approx. 29 months we sat down with the doctor, he had asked us if Dylan ever had seizures. What? We told him not to our knowledge, and that we weren’t even sure what a seizure looked like. He gave us a brief description of what Dylan could have been having and except for the staring off, he hadn’t had any other visible signs of seizures. However, Dylan did have to have some more blood work and surprise, surprise everything came back normal. The doctor sent us back to the special pediatrician who then sent us back to our regular pediatrician, who told us Dylan had Cerebral Palsy, with some developmental delay. I couldn’t accept that Dylan had CP. From being uneducated and seemingly narrow minded, when I thought of CP, I thought of helpless children in wheelchairs, with tubes and monitors, who couldn’t talk, couldn’t walk. I refused to accept that, that was my child. Shortly after this, Dylan started waking up in the middle of the night screaming and putting his head down onto his bed, as though he had a headache. So, I called my GP for an appointment. She referred him to a neurologist and booked him in for an EEG.
Shortly after the EEG and before he had started seeing the neurologist, Dylan and our daughter were playing at the time and suddenly, he just fell over. It looked as though it was in slow motion. I had to pick our daughter up off of him and I noticed his eyes were fixated to the left and his tongue was twitching out of his mouth. I immediately thought it was a seizure but he came out of it and resumed playing. That same night, Dylan did it again. By this time, my husband was home from work, and I had just finished telling him what had happened earlier, so my husband picked him up and said, “we’re going to the hospital.” He called his parents to come and watch our daughter, thankfully then only lived 5 minutes away. When we took him to emerge, we were waiting and Dylan was walking around with daddy, giggling and having fun. His name was called over the intercom so we took him in. The nurse who greeted us, told us our name had been called accidently, however, as Dylan was in my husband’s arms, he started to convulse. The nurse brought us into a private room and called for the ER doctor. Everything was happening. I’ll never forget his little body bouncing on the bed in the hospital. By the time the doctor had come in, Dylan had vomited and still in full clonic tonic seizure mode.
I’m the type of person that needs to be involved in my children’s care, so when I saw the doctor pull out battery powered drill, I stopped everything. I made him explain to me what was about to happen. He told me he was going to drill a needle into my son’s leg, into the bone marrow, to administer Ativan, since he was bouncing too much, they wouldn’t be able to put in an IV and Ativan into bone marrow was a lot quicker. I said, “Ok, but I need to be doing something. Can I suction?” The nurse said of course, so that’s what I did, while I was listening to the needle being drilled into his leg. Again, a sound I’ll never forget. His seizure was 7 minutes long. This was the first time Dylan was ever admitted to the hospital for anything. I was by his side the whole time. Before leaving the hospital the next morning they put Dylan on Valproic Acid and told us they had called the neurologist who we were supposed to be seeing. The next work day, I received a call with an appointment date and time for Dylan to see the neurologist.
After seeing the neurologist, a handful of times, we didn’t feel as though he was really wanting to help find a cause for Dylan’s seizures. We wanted a reason, not just to put a band aid on it. He would say, “it is what it is,” and hand us another prescription. We were never more than fifteen minutes in his office. So, I went back to my GP and asked for a second opinion. She then referred Dylan to an amazing neurologist, whom he still sees today. The first time we met the second neurologist, we said our hello’s and sat down. The doctor took Dylan out of his stroller and placed him on his knee and started talking to him, like a child. I cried in the doctor’s office. Two hours later we are leaving his office with a new prescription and a referral for an MRI.
These first three years of Dylan’s life were the most stressful and emotional for the both of us. We put endless blame on ourselves, “What did we do wrong?” “Was it something I did?” “Was it because of the form of birth control we were using?” “Was it because of the line of work my husband is in?” At one of Dylan’s regular pediatrician appointments, she asked us how we were coping with Dylan’s diagnosis. I was open with her and said that it’s hard for me to accept. It’s hard for me to come to terms. That I lay blame on myself. She looked at me and said, “There was nothing you could have done better. You did it already.” She said, “You both are mourning for the child you had hoped and wished you would have. Everyone wants a healthy child. Though he is prefect in every way, you as parents know there is something different about him. Love him. Help him. Fight for him,” and that’s what we’ve been doing.
Now, Dylan is 11 years old. He’s been on 6 & 7 different anti-seizure medications and none of them worked. He is currently using Clobazam and Lamictal but even those don’t help. He’s had 5 MRI’s that show a little damage done to his inner left lobe, that is inoperable. He’s had a muscle biopsy that came back normal. Although with that, he was given oxygen and when he woke up, he looked right at me and said, “Hi mom.” He hadn’t spoken in 2 years before that. He’s had a lumbar puncture that has come back normal and we found out he is allergic to the Phenobarbital family. He has had many stitches, staples and glue to his head from having seizures and hitting something, even while wearing a helmet. Four years ago, we discussed with our neurologist about medical cannabis – CBD oil and he’s been on it ever since. At first, we had to make the oil, but now Dylan has a Health Canada exemption to import Charlotte’s Web from Colorado. We find this really helps, doesn’t take his seizures away completely, but his clobazam dosage has significantly decreased, the seizures don’t seem as severe and the light in his eyes has come back. It wasn’t until May of this year (2017) that the Genetics team at Sick Kids sat down with us, while Dylan was in his room, just out of surgery for his left femur and left hip reconstruction, that we found out about this new diagnosis. We were asked how we feel about the news and my husband and I looked at each other and I said, “Honestly, Dylan is Dylan. We love him the way he is and you haven’t really given us anything that will drastically change his life over night. We appreciate the new information because now we know where we are going and for that, we are happy.”
This has been Dylan’s life. We love him unconditionally and we are so blessed to have him in our lives. He is a great not so little boy; he and his sister are inseparable and he is admired by his little brother. He is our hero.
My pregnancy was normal and I fell in love with our first son, the moment I knew he was in there. At 38 weeks, my OB wanted to induce my labour as I was young, it was my first baby and he felt the baby was measuring quite large. So, on December 8th 2005, my husband and I walked into the hospital and were both nervous and excited to become parents.
With being induced the pain of labour was brought on very quickly, so I had an epidural. Once I was able to get comfortable, I had a little nap and everything was great. Until it wasn’t. I woke up in extreme pain so the nurse told me to push. I did what she wanted me to do, I pushed. She then decided a few moment later that she should check me and low and behold, my son’s head had popped out. Yeah! No. The nurse pushed my son’s head back in and held it there, while another nurse ran to get the doctor. During this time, I’m telling her to let go, to deliver my baby. She kept repeating to me that she “couldn’t because the doctor wasn’t in the room.” Needless to say, this made me confused and angry. Not only was she putting my new baby at risk, but the pain I was in, was nothing I had ever felt before. When the doctor finally came into the room, he told the nurse to let go, and he caught my son. The nurses carried him quickly to the baby incubator in the corner of the room and proceeded to do their monitoring and tests on him. I saw a little oxygen mask come out so I asked what was happening. I had yet to hear him cry. A nurse turned to me and said, he had swallowed some of his poop so they were giving him oxygen. I finally heard him cry. What an amazing sound. A nurse wrapped him up and gave him to me and I finally got to hold my new baby boy. He weighed 7lbs 14oz. His APGAR scores were 9 & 9.
When he was handed to me, I kissed his forehead and told him that I loved him. Then, I started to notice he was becoming more reddish orange, as he laid in my arms sleeping. I asked the nurse why he was so orange looking and she told me “he was a little jaundice but no need to worry, but when you get home, just sit in front of a sunny window and it will go away.” I proceeded to look him over, what else was on his body that they weren’t telling me? I noticed he had a very large bruise on the back of his head. When I asked the nurse why he had the bruise, she said, “because he came down the birth canal so fast.” He had some little birth marks, known as stork bites on his head and neck and everything else, seemed normal. I tried to breastfeed Dylan and I struggled a lot. Between him not waking up to eat and seeming to have difficulty latching on, after two months of constant struggle, I started giving him formula. I put a lot of blame on myself, I was a new mom, a young mom and I didn’t know what to do. I don’t believe I ever reached post-partum depression, I just thought things would have come more naturally for me. Dylan slept all the time. The only time I could get him to wake was for a bottle, but then would fall back to sleep with a bottle in his mouth. I had mentioned my concerns to my OB and my GP and both told me it was normal. Some babies like to sleep more than others.
I started to notice when Dylan was around 6 months, he was staying awake longer, becoming more interactive, smiling, reaching for his toes, putting his toes in his mouth, rolling around, babbling, occasionally staring off but he was quite happy just being a happy little boy. At his 6 months well baby check up, I told my GP that my only concern was, Dylan wasn’t crawling. He was showing no signs of movement. We have a niece that is only 3 weeks older than our son, so we were seeing her do things and Dylan was no where near her progress. My GP told me, that some babies are a little slower at developing than others, but not to worry. Also, she said that Dylan was a boy and boys are slower. She told me if things were still a concern at 12 months, then to let her know and she would start the progress to a pediatrician. Things didn’t progress much more at his 12 months check up so my GP referred Dylan to a pediatrician. I knew something wasn’t right, so I was happy that my GP was finally listening to me.
Dylan was approx. 13 months old when he first seen a pediatrician. The pediatrician ordered blood work, urine work, a CT scan (not sure what that was supposed to do, but I played along) and everything came back “normal.” The pediatrician told me I had a prefect, healthy baby boy and he was just delayed. I agreed with him, that he was health and prefect but I felt there was something more to my son. He told me there was nothing more that he could do for my son. So, I went back to my GP and told her I wanted a second opinion. She sent me another pediatrician, whom Dylan still sees today and she was amazing. Dylan started seeing her at approx. 18 months old. She ordered new blood work and referred Dylan to a special development pediatric pediatrician for some further answers. (In Canada, especially Ontario, referrals take approximately 6-12 months before you are seen, just to give you some time line and perhaps understand some of my frustrations. During this time also, we hired an occupational therapist to work with Dylan, as the wait time was 12-18 months long.) The appointment to see this special pediatrician was very quick and as she’s watching Dylan play, watching him continuously spin a wheel on an upside-down truck, she begins interacting with him. He looks at her and smiles and babbles. She turned to my husband and I and said, “Your son is the first child that I have ever seen and I don’t know what’s wrong with them. He’s not autistic. But I’m going to call Sick Kids Metabolic and Genetics right now.” And she did. She called the department right in front of us, asked us when we could go to Sick kids and made us the appointment right there. It felt liberating that perhaps we could finally have answers for our son.
At around the age of 19 months old, Dylan started using some words. We were happy that things seemed to be finally developing and moving forward. He still wasn’t walking on his own, however, with the help of community support, we were able to get a physiotherapist involved to help Dylan gain the goal of walking. He was placed into AFO’s, to help give his feet some structure as he seemed to have little rounded, meaty feet. During this time as well, I was expecting our second child. It was nice to see Dylan understanding that mommy had a baby in her belly, as he would rub my belly and say “baby” at the same time. Anytime we snuggled, he would rest his ear against my belly to “hear the baby.” It was nice to see the bond of older brother and baby sister grow especially when she was born. He was the happiest big brother ever. It was amazing to see. Dylan was 25 months old, when our daughter was born. The family struggles from myside of the family weren’t the easiest, everyone has an opinion on what you should be doing, though they don’t understand what it is you go through on a daily basis.
The wait to go to Sick Kids was only a few shorts months wait. When Dylan was approx. 29 months we sat down with the doctor, he had asked us if Dylan ever had seizures. What? We told him not to our knowledge, and that we weren’t even sure what a seizure looked like. He gave us a brief description of what Dylan could have been having and except for the staring off, he hadn’t had any other visible signs of seizures. However, Dylan did have to have some more blood work and surprise, surprise everything came back normal. The doctor sent us back to the special pediatrician who then sent us back to our regular pediatrician, who told us Dylan had Cerebral Palsy, with some developmental delay. I couldn’t accept that Dylan had CP. From being uneducated and seemingly narrow minded, when I thought of CP, I thought of helpless children in wheelchairs, with tubes and monitors, who couldn’t talk, couldn’t walk. I refused to accept that, that was my child. Shortly after this, Dylan started waking up in the middle of the night screaming and putting his head down onto his bed, as though he had a headache. So, I called my GP for an appointment. She referred him to a neurologist and booked him in for an EEG.
Shortly after the EEG and before he had started seeing the neurologist, Dylan and our daughter were playing at the time and suddenly, he just fell over. It looked as though it was in slow motion. I had to pick our daughter up off of him and I noticed his eyes were fixated to the left and his tongue was twitching out of his mouth. I immediately thought it was a seizure but he came out of it and resumed playing. That same night, Dylan did it again. By this time, my husband was home from work, and I had just finished telling him what had happened earlier, so my husband picked him up and said, “we’re going to the hospital.” He called his parents to come and watch our daughter, thankfully then only lived 5 minutes away. When we took him to emerge, we were waiting and Dylan was walking around with daddy, giggling and having fun. His name was called over the intercom so we took him in. The nurse who greeted us, told us our name had been called accidently, however, as Dylan was in my husband’s arms, he started to convulse. The nurse brought us into a private room and called for the ER doctor. Everything was happening. I’ll never forget his little body bouncing on the bed in the hospital. By the time the doctor had come in, Dylan had vomited and still in full clonic tonic seizure mode.
I’m the type of person that needs to be involved in my children’s care, so when I saw the doctor pull out battery powered drill, I stopped everything. I made him explain to me what was about to happen. He told me he was going to drill a needle into my son’s leg, into the bone marrow, to administer Ativan, since he was bouncing too much, they wouldn’t be able to put in an IV and Ativan into bone marrow was a lot quicker. I said, “Ok, but I need to be doing something. Can I suction?” The nurse said of course, so that’s what I did, while I was listening to the needle being drilled into his leg. Again, a sound I’ll never forget. His seizure was 7 minutes long. This was the first time Dylan was ever admitted to the hospital for anything. I was by his side the whole time. Before leaving the hospital the next morning they put Dylan on Valproic Acid and told us they had called the neurologist who we were supposed to be seeing. The next work day, I received a call with an appointment date and time for Dylan to see the neurologist.
After seeing the neurologist, a handful of times, we didn’t feel as though he was really wanting to help find a cause for Dylan’s seizures. We wanted a reason, not just to put a band aid on it. He would say, “it is what it is,” and hand us another prescription. We were never more than fifteen minutes in his office. So, I went back to my GP and asked for a second opinion. She then referred Dylan to an amazing neurologist, whom he still sees today. The first time we met the second neurologist, we said our hello’s and sat down. The doctor took Dylan out of his stroller and placed him on his knee and started talking to him, like a child. I cried in the doctor’s office. Two hours later we are leaving his office with a new prescription and a referral for an MRI.
These first three years of Dylan’s life were the most stressful and emotional for the both of us. We put endless blame on ourselves, “What did we do wrong?” “Was it something I did?” “Was it because of the form of birth control we were using?” “Was it because of the line of work my husband is in?” At one of Dylan’s regular pediatrician appointments, she asked us how we were coping with Dylan’s diagnosis. I was open with her and said that it’s hard for me to accept. It’s hard for me to come to terms. That I lay blame on myself. She looked at me and said, “There was nothing you could have done better. You did it already.” She said, “You both are mourning for the child you had hoped and wished you would have. Everyone wants a healthy child. Though he is prefect in every way, you as parents know there is something different about him. Love him. Help him. Fight for him,” and that’s what we’ve been doing.
Now, Dylan is 11 years old. He’s been on 6 & 7 different anti-seizure medications and none of them worked. He is currently using Clobazam and Lamictal but even those don’t help. He’s had 5 MRI’s that show a little damage done to his inner left lobe, that is inoperable. He’s had a muscle biopsy that came back normal. Although with that, he was given oxygen and when he woke up, he looked right at me and said, “Hi mom.” He hadn’t spoken in 2 years before that. He’s had a lumbar puncture that has come back normal and we found out he is allergic to the Phenobarbital family. He has had many stitches, staples and glue to his head from having seizures and hitting something, even while wearing a helmet. Four years ago, we discussed with our neurologist about medical cannabis – CBD oil and he’s been on it ever since. At first, we had to make the oil, but now Dylan has a Health Canada exemption to import Charlotte’s Web from Colorado. We find this really helps, doesn’t take his seizures away completely, but his clobazam dosage has significantly decreased, the seizures don’t seem as severe and the light in his eyes has come back. It wasn’t until May of this year (2017) that the Genetics team at Sick Kids sat down with us, while Dylan was in his room, just out of surgery for his left femur and left hip reconstruction, that we found out about this new diagnosis. We were asked how we feel about the news and my husband and I looked at each other and I said, “Honestly, Dylan is Dylan. We love him the way he is and you haven’t really given us anything that will drastically change his life over night. We appreciate the new information because now we know where we are going and for that, we are happy.”
This has been Dylan’s life. We love him unconditionally and we are so blessed to have him in our lives. He is a great not so little boy; he and his sister are inseparable and he is admired by his little brother. He is our hero.