Sonja & Landon

“Landon was born in February of 2011. When he was just a couple of months old, I kept saying to his pediatrician that I didn’t think he was using his right arm like he was using his left arm. When they’re babies, it’s hard to tell, because they’re so floppy. Then, when he was 5 1/2 months old, I was feeding him on a Saturday night, and he started having seizures. It was a rare type of seizure called infantile spasms. My nurse instinct kicked in and I knew this had to be something neurological. It was just his upper body versus the whole body seizure like you normally see. It continued every couple of hours. I called the nurse and she suggested that it might be his cereal. I said no, he has to be seen today, otherwise I’m taking him to ER. They got me in that afternoon. He ended up having a seizure in the doctors office, and she immediately said, I know what this is. This is an emergency, and we need to get you to Children’s Hospital in St. Paul. When we got there, they were all ready for us. From start to finish, everyone there was amazing. Landon had multiple scans and tests done. They were continuously monitoring his brain, which was showing all the abnormal activities. The next morning, we met with the neurologist and neurosurgeon, and that’s when they gave us the diagnosis. He had an intrauterine stroke when I was pregnant with him, and it went undetected. Basically, he had a massive brain bleed when I was pregnant with him, and they don’t know why. I didn’t take a fall that would’ve injured my belly. I wasn’t taking any medications that would’ve caused this to happen. It was just a fluke. The entire left side of his brain was affected by the stroke, except a little bit on the top and bottom of his brain. It was old blood. So they think it was early on in the pregnancy and the reason I didn’t see any signs right away at birth was because he didn’t start using that area of his brain until it started firing at 5 months old trying to use that side of his brain. A medication was introduced to us to hopefully make the seizures go away. Once the medication was over after the first month, he was seizure free. He’s now on an anti-seizure medication, and he will be on that forever since he’s at such a high risk for seizures, but he hasn’t had one since. What resulted from the stroke was little to no use of his right arm, a lazy eye that was corrected by surgery, and he couldn’t walk until he was 2 1/2. He also has bilateral foot braces, and a thumb splint that helps him hold his thumb out. Consistent PT, OT, and other therapies have helped a lot with his mobility. Since it was such a massive stroke, and if that initial medication didn’t work, he was probably going to have to have brain surgery to cut off the connection. But since he was so young, and we got him treatment right away, his brain was able to redevelop. It’s truly amazing. He knows his limits, but at the same time, we still push him. I tell him all the time to just keep trying. He couldn’t climb stairs by himself, but with constant reassurance, he’s able to climb stairs on his own now. We never say I can’t. He’s a normal kid in every other way. He has a sharp mind. He knows on the playground he can’t do monkey bars because he can’t use both of his arms. His buddies at school will tell him it just takes practice. To them, he’s normal, which is incredible. It’s hard as a parent to sit back and see the struggles, but at the same time, I’m so proud of him. I still cry about it. He’s done such amazing things already. It’s hard to know if he will get more use out of his arm, but you never know.”

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