I'm sure, like us, you are waiting to hear what the results are from Soren's testing. And I would like to tell you, but nobody has contacted us yet. I'm trying not to freak out or get too bummed about this. However, I don't think I'm doing a very good job since I have a big old tension headache just thinking about what his doctor will say.
Anyhow, I will post once I have news of any sort.
Amy
Tuesday, July 31, 2007
Wednesday, July 25, 2007
Back from the Hospital!
We actually were discharged yesterday and were home in time for dinner because Soren performed so well!
We were admitted on Monday afternoon. Soren was hooked up to the EEG/telemetry and his PET scan was scheduled for the next morning at 8 am. Their plan was to get that scan before Soren had any seizures. Once the scan was done, we were going to drop out Soren's drugs and get seizures on record.
Well, Soren had a different plan. After We an uneventful night (though not really very restful), they took Soren off right on time for his scan. He hadn't had his morning meds yet and I thought it might be better to get them in after the scan. They got the IV into his arm and as they were stabilizing it, Soren had a seizure. It was a short tonic seizure and we caught it on the EEG and video.
The only problem was that we now couldn't do the PET scan because the readings wouldn't be accurate while he was post-ictal. So back up to the room he went. At this point I was very frustrated and kicking myself for not giving him his meds (though this wasn't the cause and I knew it). Soren then had 4 more seizures, giving them great examples of how he seizes (what a boy!). With those on record, the neurologist decided we should give him Diastat to stop the seizing and get him back down to the PET scan.
So we did that, got him back down stairs, knocked him out (not that he was that awake) and did the PET scan. Then, as he was still sedated, they shuttled him even further into the bowels of the hospital and did the MRI. Wham! Bam! Done! Soren was brought back up to the room, woke up, ate (his first meal of the day) and they gave us the boot!
The preliminary readings are inconclusive. The EEG indicated activity on the right side of his brain, the PET scan showed nothing, and the MRI showed something on the left side of his brain. Ugh! But they are going to get the complete results, compare all the tests, and have a meeting on Monday about if he's a surgical candidate.
Yesterday, before the PET and MRI, my hopes were very high. Now, after the preliminary results, I'm trying not to get excited or disappointed.
Soren is in great spirits today despite the insanity of yesterday. I'm exhausted. So we're just going to lay low today.
Thanks for all your good thoughts!
Amy
We were admitted on Monday afternoon. Soren was hooked up to the EEG/telemetry and his PET scan was scheduled for the next morning at 8 am. Their plan was to get that scan before Soren had any seizures. Once the scan was done, we were going to drop out Soren's drugs and get seizures on record.
Well, Soren had a different plan. After We an uneventful night (though not really very restful), they took Soren off right on time for his scan. He hadn't had his morning meds yet and I thought it might be better to get them in after the scan. They got the IV into his arm and as they were stabilizing it, Soren had a seizure. It was a short tonic seizure and we caught it on the EEG and video.
The only problem was that we now couldn't do the PET scan because the readings wouldn't be accurate while he was post-ictal. So back up to the room he went. At this point I was very frustrated and kicking myself for not giving him his meds (though this wasn't the cause and I knew it). Soren then had 4 more seizures, giving them great examples of how he seizes (what a boy!). With those on record, the neurologist decided we should give him Diastat to stop the seizing and get him back down to the PET scan.
So we did that, got him back down stairs, knocked him out (not that he was that awake) and did the PET scan. Then, as he was still sedated, they shuttled him even further into the bowels of the hospital and did the MRI. Wham! Bam! Done! Soren was brought back up to the room, woke up, ate (his first meal of the day) and they gave us the boot!
The preliminary readings are inconclusive. The EEG indicated activity on the right side of his brain, the PET scan showed nothing, and the MRI showed something on the left side of his brain. Ugh! But they are going to get the complete results, compare all the tests, and have a meeting on Monday about if he's a surgical candidate.
Yesterday, before the PET and MRI, my hopes were very high. Now, after the preliminary results, I'm trying not to get excited or disappointed.
Soren is in great spirits today despite the insanity of yesterday. I'm exhausted. So we're just going to lay low today.
Thanks for all your good thoughts!
Amy
Monday, July 23, 2007
Off to the Hospital!
Soren is getting admitted to the UCLA today for testing: an EEG/telemetry (video), MRI, and PET scan. He will be in for at least 3 days, depending "on my child's performance" (i.e. amount of seizure activity).
So for the first time, I would like everyone to send out thoughts for Soren to seize in these next 3 days so that this activity can be recorded on the EEG/telemetry. I will be in the hospital, day and night, for the duration of Soren's stay because I am the camera operator, making sure any seizures are captured on film.
They are so serious about a parent staying that I'm actually only allowed to leave to shower or to get food from the cafeteria that I must then bring back up to the room to eat. Instead I'm just bringing a big cooler full of my food and Soren's food.
I probably won't be able to post an update on the progress until we get home. But I plan to take pictures so everyone can see what the whole process is like.
Thanks for the good thoughts!
Amy
So for the first time, I would like everyone to send out thoughts for Soren to seize in these next 3 days so that this activity can be recorded on the EEG/telemetry. I will be in the hospital, day and night, for the duration of Soren's stay because I am the camera operator, making sure any seizures are captured on film.
They are so serious about a parent staying that I'm actually only allowed to leave to shower or to get food from the cafeteria that I must then bring back up to the room to eat. Instead I'm just bringing a big cooler full of my food and Soren's food.
I probably won't be able to post an update on the progress until we get home. But I plan to take pictures so everyone can see what the whole process is like.
Thanks for the good thoughts!
Amy
Friday, July 20, 2007
Give 'im the Reboot
Soren's Monday continued to go bad, so after his 3rd tonic-clonic seizure, I gave him Diastat to stop the madess. This seriously acts like a reboot to his system (thank goodness). And that's how I imagine his brain. Like a computer, it freezes, not being able to process all the information. You hope that the computer will fix itself, but when it doesn't, you have to shut it down.
And it worked. The rest of the week he was GREAT. He went to school, he laughed like a goofball, he's been very happy. And now we are off to Enumclaw to visit Aaron's family. Hopefully his good mood will last so everyone can see what a delight he is!
Amy
And it worked. The rest of the week he was GREAT. He went to school, he laughed like a goofball, he's been very happy. And now we are off to Enumclaw to visit Aaron's family. Hopefully his good mood will last so everyone can see what a delight he is!
Amy
Monday, July 16, 2007
Seizures, A Week Early
Soren will be going in for testing at UCLA next Monday. During this time, we're actually going to want him to have seizures so we can see what's going on in the inside of his brain and on the outside of his body. Since Soren's had relatively good seizure control, I didn't know how we were going to induce the seizures.
Well, Soren decided to start a week early, having 2 seizures yesterday and 1 (so far) today. The first yesterday was done when he was with his respite worker, poor woman. The rest were with us. I've kept him home from school and am hoping today isn't a bad day.
I also hope that he actually repeats this performance next week. These seizures are quite awful and I really want them recorded by the EEG and video camera.
Amy
Well, Soren decided to start a week early, having 2 seizures yesterday and 1 (so far) today. The first yesterday was done when he was with his respite worker, poor woman. The rest were with us. I've kept him home from school and am hoping today isn't a bad day.
I also hope that he actually repeats this performance next week. These seizures are quite awful and I really want them recorded by the EEG and video camera.
Amy
Thursday, July 12, 2007
Not Much to Say
Sorry I haven't written in a bit. Honestly, I don't have much news at the moment, which is a good thing. Soren's been well. He's in summer school now and seems quite happy to be back on schedule. Still no seizures since the dehydration days of our trip.
I guess I have a couple little notes of interest. He does seem more snuggly than usual, which is nice. Granted, I have to heft him onto my body to see if he wants a snuggle. But at least he's been enjoying it, so it's worth the heft.
Soren and I were in the kitchen getting his breakfasts ready while Aaron was getting his shoes on. Soren heard the distinctive thud of Aaron's shoe on the wood floors and smiled. He knows the sound and who it belongs to. I've seen him smile at his father's step before.
When I went into Soren's room today to get him up, he turned his head and looked towards the door when I opened it. He didn't always do this.
And when I'm asking him where Moira is and where I am, he seems to be making a real effort to turn and look our directions, even if he doesn't get it spot on.
That's it. We're on the "no news is good news" kick right now. Hope if there's any news, it will be good.
Amy
I guess I have a couple little notes of interest. He does seem more snuggly than usual, which is nice. Granted, I have to heft him onto my body to see if he wants a snuggle. But at least he's been enjoying it, so it's worth the heft.
Soren and I were in the kitchen getting his breakfasts ready while Aaron was getting his shoes on. Soren heard the distinctive thud of Aaron's shoe on the wood floors and smiled. He knows the sound and who it belongs to. I've seen him smile at his father's step before.
When I went into Soren's room today to get him up, he turned his head and looked towards the door when I opened it. He didn't always do this.
And when I'm asking him where Moira is and where I am, he seems to be making a real effort to turn and look our directions, even if he doesn't get it spot on.
That's it. We're on the "no news is good news" kick right now. Hope if there's any news, it will be good.
Amy
Tuesday, July 03, 2007
DR Trip 2nd Leg: Smoother Waters
Yes, I am happy to say that the rest of our trip went MUCH smoother. With Soren hydrated again, he only had 2 more rather uneventful seizures (tonic stiffening for only about 10 seconds without the horrible clonic jerking). We returned to Atlanta and were given a terrific tour of one of the Turner buildings (with Cartoon Network on one of the floors). Moira was thrilled with all the goodies she got. And I even got to have an evening out with some CN friends while Aaron took care of the kids!
Then on to Miami, where Aaron's folks joined us, and to the DR! I actually made it through without food poisoning and got to play in the pool AND the sea! Soren had a great time in both as well with his special flotation device. They even had this small wading pool that Soren could stand in (something he usually hates doing but for some reason, in water, he chose to do it!).
Soren's treatment Friday went well. The only problem is that with these injections, Soren keeps getting stronger and stronger! When we first went back in 2005, Soren was so weak and having so many seizures, he would just lie there and not put up a fight when the IV was put in. Now he squirms, rolls to his side, gripes, and raises a fuss--just as any typical 3 year old would when being stuck by needles! I'm happy to have this problem, but it made the doctor and nurse's job much harder. Nurse Daisy was brilliant and got the IV in on the first try and then held his hand still to made sure Soren didn't mess it up. Doctor Maria was also great getting the injections into Soren's thighs when all he wanted to do was kick! Dr. Rader and his team really took the time to make sure everything went smoothly, which we really appreciate.
We made it back to our hotel in time for lunch and got in some more pool time. Then we had Saturday to relax before turning back around to Miami on Sunday and LA on Monday.
Soren's Almond Breeze made it through the trip without leaking all over the luggage. However, security in the DR did find these containers of liquid suspicious and pulled my father-in-law into a back room to explain what it was. Don't worry, he and the milk made it out without incident.
Amy
Then on to Miami, where Aaron's folks joined us, and to the DR! I actually made it through without food poisoning and got to play in the pool AND the sea! Soren had a great time in both as well with his special flotation device. They even had this small wading pool that Soren could stand in (something he usually hates doing but for some reason, in water, he chose to do it!).
Soren's treatment Friday went well. The only problem is that with these injections, Soren keeps getting stronger and stronger! When we first went back in 2005, Soren was so weak and having so many seizures, he would just lie there and not put up a fight when the IV was put in. Now he squirms, rolls to his side, gripes, and raises a fuss--just as any typical 3 year old would when being stuck by needles! I'm happy to have this problem, but it made the doctor and nurse's job much harder. Nurse Daisy was brilliant and got the IV in on the first try and then held his hand still to made sure Soren didn't mess it up. Doctor Maria was also great getting the injections into Soren's thighs when all he wanted to do was kick! Dr. Rader and his team really took the time to make sure everything went smoothly, which we really appreciate.
We made it back to our hotel in time for lunch and got in some more pool time. Then we had Saturday to relax before turning back around to Miami on Sunday and LA on Monday.
Soren's Almond Breeze made it through the trip without leaking all over the luggage. However, security in the DR did find these containers of liquid suspicious and pulled my father-in-law into a back room to explain what it was. Don't worry, he and the milk made it out without incident.
Amy
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