Tuesday, June 9, 2009
MRI results
Today Aiden had to get a school physical because he starts preschool in the fall! He is going to be in a special needs class that will allow him to recieve OT and PT every week :) Anyways, right as the visit with the doctor started, he received a fax... it was the MRI results! It was very unexpected to get them so soon, and now I wish I hadn't! Basically, the scan found an abnormal band of scar tissue and cysts along the left lobe of his brain. The paper said that it looks like there is evidence of an old infarct (which I did expect) and something called schizencephaly. That's the part I didn't expect, and I am stressing about. It looks pretty rare, the pediatrician didn't really know what it was, so googled it. Yeah, I know that is never a good idea, but there really isn't much info out there on it, other than it appears to be a genetic deformity of the brain. It does look like we got extremely lucky with Aiden. In about 17% of kids with it, there is not a lot of obvious effects. In most cases though, the children have full paralysis and mental retardation. Since Aiden scored at the 4-5 year old level in the verbal and cognetive areas of his development exam last month, we know that there is no mental impairment at all. What scares me is his risk for seizures. Apparently, a large number of kids with the disease develop epilepsy by 4-5 years old. I really won't know much else about it until his neuro appointment, so it looks like I have 3.5 weeks to sit around worrying and watching for any sign of a seizure in Aiden! I do have to wonder about the time I brought him to his doctor when he was sick and he had a seizure in the waiting room and was told it was a febrile seizure, even though his temp wasn't that high (I think he had been around 102 the wholeday). He then had 2 more that night, and I didn't take him to get checked because I was warned it would likely happen. I guess just more stuff to ask the doctor!
Friday
I am going to post what I meant to last week, then I will add another with the results, otherwise this will be way too long!
Friday morning was Aiden's scheduled MRI to get a clear picture of his brain. The neurologist said we may see some sort of evidence of a stroke that he thinks occurred in utero to cause his cerebral palsy. The main reason to even get the MRI done is to look for possible clotting issues, because that would mean he may be prone to more strokes as he gets older. I got a phone call from one of the nurses Thursday morning with intructions for Aiden, such as no food past 8pm, and nothing but clear liquids after that. Then she told me only 2 adults are allowed at his bedside, and no other children! That would have been nice to know about before both my mom and husband already arranged to be there. Oh yeah, and did I mention that Connor absolutely refuses to take a bottle, so I couldn't just leave him at home with someone?
We got there at 7:30am, and Brandon and I went back to the pediatric outpatient area to get checked in. He was weighed and measured, then shown to a cubicle area with a recliner and a TV. We waited there for about 30 minutes, then just after Brandon and my mom switched places, they decided it was IV time. I really hate, more than anything else in the entire world, seeing my child in pain. Luckily, they got the IV on the first try. Also lucky was the fact that they did it to his left hand. He tried for the next 2 hours to remove that thing, but without much strength and no fine motor skills in his right hand, he was out of luck! I have no idea why they chose to put it in that far ahead of schedule, but I am glad that it went so smooth. He's had IVs two other times, and it always took multiple tries.
There was some sort of emergency, so our appointment got bumped back, but finally at 10am we wheeled Aiden to the MRI suite on his "race car bed". It has all the monitors hooked up, so he was convinced it was his special computer that made him super fast. The imagination of a 2 year old! I have to add, the longer we were there, the more nurses he caused to gravitate towards him. By the time we were walking to the MRI room, he had a mini entourage as an escort :) He ended up with 2 extra nurses during sedation, simply because he flirted with them!
As bad as it sounds, watching the sedative take effect was pretty funny. I was told to expect some crying and screaming, because toddlers tend to violently fight sedation, but not Aiden! He was sooo giggly, and was joking and trying to play tricks on the nurses. He really loved trying to convince the doctor that there was a bird on his shoulder! It ended up taking double the usual dose to knock him out, but he fell asleep happy and woke up the same way :) It didn't hurt that he woke up to a popsicle in his face. His recovery took about 30 minutes, then I got to take him home. That part was not so much fun. I basically had 2 babies for awhile, because he couldn't walk (he tried once, and collapsed face first on the floor!), he had to be supervised while eating, and could only have soft foods. Baths were not allowed, just in case he passed out and I wasn't holding him at that moment, so it was really fun cleaning all the pudding and jello off of him! Brandon came home just before bed time (he works in Rockford this summer, so it's a long commute), and ended up sleeping with him because I was told to monitor his breathing all night. Saturday he woke up full of energy, ate a TON, and was back to his old self :) We were told that the results would be sent to his neurologist in 3-5 business days, and figured we'd find out about them at his appointment on the 29th.
We spent the weekend as a family. Because Brandon is working in Rockford, he is spending most of the week at my parent's house in Grand Rapids, which is only 15 minutes from his job. On Saturday, we went to the Impression 5 Science Museum, which turned out to be free! They accept the Grand Rapids Children's Museum memberships there, so I think we'll be there more often! Sunday was a lazy day for me, and Brandon worked on some of the projects around the house that are falling behind in his absence. He left again early Monday morning, so we are now on week 3 of just me and the kids. It gets crazy, but I think we are settling in to a nice routine.
Oh, and by the way, Connor is out of control! The kid is quite the crawler, and he's figured out how to climb, walk along the couch, and is now working on climbing stairs! I am so not ready for this!!!
Friday morning was Aiden's scheduled MRI to get a clear picture of his brain. The neurologist said we may see some sort of evidence of a stroke that he thinks occurred in utero to cause his cerebral palsy. The main reason to even get the MRI done is to look for possible clotting issues, because that would mean he may be prone to more strokes as he gets older. I got a phone call from one of the nurses Thursday morning with intructions for Aiden, such as no food past 8pm, and nothing but clear liquids after that. Then she told me only 2 adults are allowed at his bedside, and no other children! That would have been nice to know about before both my mom and husband already arranged to be there. Oh yeah, and did I mention that Connor absolutely refuses to take a bottle, so I couldn't just leave him at home with someone?
We got there at 7:30am, and Brandon and I went back to the pediatric outpatient area to get checked in. He was weighed and measured, then shown to a cubicle area with a recliner and a TV. We waited there for about 30 minutes, then just after Brandon and my mom switched places, they decided it was IV time. I really hate, more than anything else in the entire world, seeing my child in pain. Luckily, they got the IV on the first try. Also lucky was the fact that they did it to his left hand. He tried for the next 2 hours to remove that thing, but without much strength and no fine motor skills in his right hand, he was out of luck! I have no idea why they chose to put it in that far ahead of schedule, but I am glad that it went so smooth. He's had IVs two other times, and it always took multiple tries.
There was some sort of emergency, so our appointment got bumped back, but finally at 10am we wheeled Aiden to the MRI suite on his "race car bed". It has all the monitors hooked up, so he was convinced it was his special computer that made him super fast. The imagination of a 2 year old! I have to add, the longer we were there, the more nurses he caused to gravitate towards him. By the time we were walking to the MRI room, he had a mini entourage as an escort :) He ended up with 2 extra nurses during sedation, simply because he flirted with them!
As bad as it sounds, watching the sedative take effect was pretty funny. I was told to expect some crying and screaming, because toddlers tend to violently fight sedation, but not Aiden! He was sooo giggly, and was joking and trying to play tricks on the nurses. He really loved trying to convince the doctor that there was a bird on his shoulder! It ended up taking double the usual dose to knock him out, but he fell asleep happy and woke up the same way :) It didn't hurt that he woke up to a popsicle in his face. His recovery took about 30 minutes, then I got to take him home. That part was not so much fun. I basically had 2 babies for awhile, because he couldn't walk (he tried once, and collapsed face first on the floor!), he had to be supervised while eating, and could only have soft foods. Baths were not allowed, just in case he passed out and I wasn't holding him at that moment, so it was really fun cleaning all the pudding and jello off of him! Brandon came home just before bed time (he works in Rockford this summer, so it's a long commute), and ended up sleeping with him because I was told to monitor his breathing all night. Saturday he woke up full of energy, ate a TON, and was back to his old self :) We were told that the results would be sent to his neurologist in 3-5 business days, and figured we'd find out about them at his appointment on the 29th.
We spent the weekend as a family. Because Brandon is working in Rockford, he is spending most of the week at my parent's house in Grand Rapids, which is only 15 minutes from his job. On Saturday, we went to the Impression 5 Science Museum, which turned out to be free! They accept the Grand Rapids Children's Museum memberships there, so I think we'll be there more often! Sunday was a lazy day for me, and Brandon worked on some of the projects around the house that are falling behind in his absence. He left again early Monday morning, so we are now on week 3 of just me and the kids. It gets crazy, but I think we are settling in to a nice routine.
Oh, and by the way, Connor is out of control! The kid is quite the crawler, and he's figured out how to climb, walk along the couch, and is now working on climbing stairs! I am so not ready for this!!!
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