i guess i left off with eye surgery, which was actually not too bad. Jacob was 18 mo old, & the worst part was they put him under, always scary, & waking up. he couldn't open his eyes, & it freaked him out. we went home a few hours later & took a nap, all 3 of us. when he woke up, his eyes were red, but he didn't seem to mind.
now for the worst part of the story. around 20 mo, Jacob started having what we later found out to be "Infantile Spasms", a type of seizure which usually occurs in infants, hence the name. we went through EEGs, some went well some, not so well. in the end, we were lucky to have been seeing a new neurologist, who had just happened to have recently finished doing a study on infantile spasms. we had few options. we could try ACTH. if that didn't work, he had access to a drug we could get from Canada. if that didn't work, Jacob would need a Hemispherectomy, where they would surgically remove the part of his brain that was damaged, & causing the seizures. if we didn't stop the seizures, they would only worsen & cause more damage to his brain. he could possibly end up with severe disabilities, if we didn't get rid of these things. let me see if i can describe them. they would happen more right after he would wake up in the morning, or after a nap. he would just be sitting there, & out of nowhere, his head would jerk forward & his right arm, the "affected" arm, would fly up. if he was in a high chair at a restaurant, his head would bang the table, loud. he even got bloody lips a few times. every time, he would cry, loud. the worst was right around Halloween, he was outside, playing in the sprinklers. he couldn't walk yet, so he would lay on his stomach & play in the water with his left hand. he had one of his seizures, & hit his eye on the metal garden edging. thank goodness, it didn't get it eyeball, but he was a lion with a black eye that Halloween.
so onto the rough part. we had to stay in the hospital for 2 nights, learning how to give him shots of ACTH. i had to practice sticking syringes into oranges. there was a point where i really thought i couldn't do it. it was too freakin hard. the nurses had already started giving it to him, so we could watch & learn. his little legs were so skinny, & he had to be held down. he would scream & cry, it hurt, & it was 20ccs of a gel (which is a lot), so it also burned. he was only 22mo old. on the 2nd day in the hospital, a male nurse showed Brett the "best way" to hold him down. another nurse walked me through giving him the shot. ugh.
we did that, i think twice a day for that 1st week. his little legs were so bruised up, but we were getting better at it. after one week, the seizures stopped. we were thrilled, but you can't just stop taking this drug, so we had to slowly ween him off for the next 4 weeks. after 5 weeks, he was puffy, but seizure free. thank goodness that ordeal was over. those damn seizures had better not come back. they didn't. so far.....
ok, the natives are getting resless, i'd better avoid the revolution. we are taking them out on the boat, which they all 3 LOVE! ttfn!
now for the worst part of the story. around 20 mo, Jacob started having what we later found out to be "Infantile Spasms", a type of seizure which usually occurs in infants, hence the name. we went through EEGs, some went well some, not so well. in the end, we were lucky to have been seeing a new neurologist, who had just happened to have recently finished doing a study on infantile spasms. we had few options. we could try ACTH. if that didn't work, he had access to a drug we could get from Canada. if that didn't work, Jacob would need a Hemispherectomy, where they would surgically remove the part of his brain that was damaged, & causing the seizures. if we didn't stop the seizures, they would only worsen & cause more damage to his brain. he could possibly end up with severe disabilities, if we didn't get rid of these things. let me see if i can describe them. they would happen more right after he would wake up in the morning, or after a nap. he would just be sitting there, & out of nowhere, his head would jerk forward & his right arm, the "affected" arm, would fly up. if he was in a high chair at a restaurant, his head would bang the table, loud. he even got bloody lips a few times. every time, he would cry, loud. the worst was right around Halloween, he was outside, playing in the sprinklers. he couldn't walk yet, so he would lay on his stomach & play in the water with his left hand. he had one of his seizures, & hit his eye on the metal garden edging. thank goodness, it didn't get it eyeball, but he was a lion with a black eye that Halloween.
so onto the rough part. we had to stay in the hospital for 2 nights, learning how to give him shots of ACTH. i had to practice sticking syringes into oranges. there was a point where i really thought i couldn't do it. it was too freakin hard. the nurses had already started giving it to him, so we could watch & learn. his little legs were so skinny, & he had to be held down. he would scream & cry, it hurt, & it was 20ccs of a gel (which is a lot), so it also burned. he was only 22mo old. on the 2nd day in the hospital, a male nurse showed Brett the "best way" to hold him down. another nurse walked me through giving him the shot. ugh.
we did that, i think twice a day for that 1st week. his little legs were so bruised up, but we were getting better at it. after one week, the seizures stopped. we were thrilled, but you can't just stop taking this drug, so we had to slowly ween him off for the next 4 weeks. after 5 weeks, he was puffy, but seizure free. thank goodness that ordeal was over. those damn seizures had better not come back. they didn't. so far.....
ok, the natives are getting resless, i'd better avoid the revolution. we are taking them out on the boat, which they all 3 LOVE! ttfn!
1 comment:
keep this up, i'm lovin it
Post a Comment