Today Evan had a quick EEG and an appointment with his neurologist, Dr. LaJoie. The EEG looked beautiful and calm with no crazy brain wave action going on. An EEG is just a snapshot of his brain activity during the timeframe of the EEG, but the fact that there were no unusual spikes is a great sign.
After the EEG, we met with Dr. LaJoie, and she was astounded by how incredibly verbal Evan is. He's always been very social and verbal, but nothing like this. The past week or so Rob and I could barely get a word in. We don't know if it's the drugs or if the surgery unlocked something, so we'll wait for the steroids to be out of his system and see. The appointment with her went really well and she was happy with his progress. We'll be back up in NY in a few months for a 2-day Video EEG in the hospital to see the results of a longer test, but we haven't seen any seizures since the surgery and Evan said he hasn't had any. Nothing but good news and we're hoping it stays that way. We couldn't be happier.
November 27, 2007
November 25, 2007
Feed Me!!
Feed me Seymour,
Feed me all night long.
'Cause if you feed me Seymour,
I can grow up big and strong...
--Audrey II, The Little Shop of Horrors
Feed Me clip on youtube.com
The steroids have hit Evan full force and he's HUNGRY. This is not some off-hand comment that Evan is hungry. It's like he is possessed by a 300 pound man who hasn't eaten in a week. The boy eats until his stomach is so full his belly button changes from an "innie" to an"outie" and then asks for more food. It's crazy, like nothing we've ever seen. Then his stomach hurts -- duh! The obvious solution is to limit his food intake to save him from himself, but hello steroids! He goes from hungry to mad and hungry and it isn't pretty. The up side is that we are in New York and every restaurant here delivers, even McDonald's if you have a $20 order!
Todays eating fest began at 6am with a grilled cheese sandwich and some left over chicken nuggets. It wasn't long before he needed another grilled cheese sandwich. At 10am, Evan wanted lunch at McDonald's but they don't serve lunch until 11:00. That delay wasn't pretty! We left the apartment at 10:30, hitting Starbucks before we showed up at McDonald's at 11am prompt. Food is the instant mood mender for Evan so he was immediately happy when he saw the golden arches. After gobbling up all his chicken nuggets and fries we had this conversation:
Evan: I'm full.
pause
Evan: Maybe I'll have just a few more french fries.
Evan eats two fries
Evan: I'm hungry!
Me: You just said you were full.
Evan: No I didn't, I'm really hungry.
Me: Are you sure? Your belly looks really full.
Evan: No it isn't. I have an idea: maybe you can ask them if they have more chicken nuggets and they will say, "yes". Is that a good idea?
Rob: We might try to find you something healthier than McDonald's.
Evan: Hmmm, maybe I'll have a grilled cheese sandwich instead.
Rob: You want to go back to the apartment to have a grilled cheese sandwich?
Evan: No, I want to eat it here.
Me: McDonald's doesn't have grilled cheese.
Evan: Yes they do.
Me: They have cheeseburgers, but no grilled cheese.
Evan: OK, I'll have a cheeseburger.
Rob goes to buy a cheeseburger
Pretty much every conversation with Evan goes this way and although it's sometimes hard (like when the food takes a while to arrive) there is a side of it that's funny. So, in the end, we just let him eat but try not to let him gorge himself too badly.
Feed me all night long.
'Cause if you feed me Seymour,
I can grow up big and strong...
--Audrey II, The Little Shop of Horrors
Feed Me clip on youtube.com
The steroids have hit Evan full force and he's HUNGRY. This is not some off-hand comment that Evan is hungry. It's like he is possessed by a 300 pound man who hasn't eaten in a week. The boy eats until his stomach is so full his belly button changes from an "innie" to an"outie" and then asks for more food. It's crazy, like nothing we've ever seen. Then his stomach hurts -- duh! The obvious solution is to limit his food intake to save him from himself, but hello steroids! He goes from hungry to mad and hungry and it isn't pretty. The up side is that we are in New York and every restaurant here delivers, even McDonald's if you have a $20 order!
Todays eating fest began at 6am with a grilled cheese sandwich and some left over chicken nuggets. It wasn't long before he needed another grilled cheese sandwich. At 10am, Evan wanted lunch at McDonald's but they don't serve lunch until 11:00. That delay wasn't pretty! We left the apartment at 10:30, hitting Starbucks before we showed up at McDonald's at 11am prompt. Food is the instant mood mender for Evan so he was immediately happy when he saw the golden arches. After gobbling up all his chicken nuggets and fries we had this conversation:
Evan: I'm full.
pause
Evan: Maybe I'll have just a few more french fries.
Evan eats two fries
Evan: I'm hungry!
Me: You just said you were full.
Evan: No I didn't, I'm really hungry.
Me: Are you sure? Your belly looks really full.
Evan: No it isn't. I have an idea: maybe you can ask them if they have more chicken nuggets and they will say, "yes". Is that a good idea?
Rob: We might try to find you something healthier than McDonald's.
Evan: Hmmm, maybe I'll have a grilled cheese sandwich instead.
Rob: You want to go back to the apartment to have a grilled cheese sandwich?
Evan: No, I want to eat it here.
Me: McDonald's doesn't have grilled cheese.
Evan: Yes they do.
Me: They have cheeseburgers, but no grilled cheese.
Evan: OK, I'll have a cheeseburger.
Rob goes to buy a cheeseburger
Pretty much every conversation with Evan goes this way and although it's sometimes hard (like when the food takes a while to arrive) there is a side of it that's funny. So, in the end, we just let him eat but try not to let him gorge himself too badly.
November 24, 2007
Freedom!
They released Evan from the hospital yesterday!!! We are so happy not to have to sleep there anymore, but we may go back to visit in a few days when Evan has a follow up appointment. We thought the doctors would discharge Evan today, but he wanted to leave so badly they gave in and let him leave a day early. Dr. Weiner wants us to stay in town for a week just to make sure everything continues to go well before we leave town, but we will be making our way back home soon.
When Evan was discharged, Chuck, Roman and Aria were still in town, so we all crammed into the studio apartment last night and had a great slumber party. After Aria and Evan were in bed, Chuck hung out with the sleeping kids at the apartment and Rob and I took Roman to the observation platform of the Empire State Building. It was a great view of NY at night, but probably someone smarter would have done it in the summer -- it's really cold and windy on the 86th floor in November! It really was breathtaking though and well worth it. By the time we got back to the apartment, Rob and I were zombies but Roman seemed like he could have kept on going. I vaguely remember being 16!
This morning Rob took Roman and Aria to the museum to check out the Egyptian area and all the suits of armor. They all came back smiling and seemed to have a great time. Chuck, Roman and Aria took the train back to DC this afternoon, so things were pretty quiet after that. It was sad seeing them leave but wonderful to have them up here for a few days.
Evan is still pretty wobbly when he walks but we get him walking often so he can build his muscles back up. We have been holding his hand when he walks and each time he looks like he has regained a little strength. We think he'll need more therapy than what he usually gets for a little while in order to get back to his pre-surgery form, but we are definitely seeing physical improvements we never expected. Evan is curling his left toes and he never could before and when he walks barefoot, he doesn't look like he's dragging his left toe like he used to. The best news is that we haven't seen ANY seizures! We're hoping Evan's progess continues in the same direction and we couldn't be happier.
When Evan was discharged, Chuck, Roman and Aria were still in town, so we all crammed into the studio apartment last night and had a great slumber party. After Aria and Evan were in bed, Chuck hung out with the sleeping kids at the apartment and Rob and I took Roman to the observation platform of the Empire State Building. It was a great view of NY at night, but probably someone smarter would have done it in the summer -- it's really cold and windy on the 86th floor in November! It really was breathtaking though and well worth it. By the time we got back to the apartment, Rob and I were zombies but Roman seemed like he could have kept on going. I vaguely remember being 16!
This morning Rob took Roman and Aria to the museum to check out the Egyptian area and all the suits of armor. They all came back smiling and seemed to have a great time. Chuck, Roman and Aria took the train back to DC this afternoon, so things were pretty quiet after that. It was sad seeing them leave but wonderful to have them up here for a few days.
Evan is still pretty wobbly when he walks but we get him walking often so he can build his muscles back up. We have been holding his hand when he walks and each time he looks like he has regained a little strength. We think he'll need more therapy than what he usually gets for a little while in order to get back to his pre-surgery form, but we are definitely seeing physical improvements we never expected. Evan is curling his left toes and he never could before and when he walks barefoot, he doesn't look like he's dragging his left toe like he used to. The best news is that we haven't seen ANY seizures! We're hoping Evan's progess continues in the same direction and we couldn't be happier.
November 22, 2007
Happy Thanksgiving!
Today, the hospital catered a Thanksgiving feast for everyone on the pediatric floor and we all (Evan, Rob, Aria, Roman, Chuck and me) joined in the festivities. It was great to get Evan out of his bed and he spent about two hours at the Thanksgiving "party". He also walked for the first time after surgery! He’s wobbly, but he’s been in bed for almost three weeks and was stoned on morphine at the time. Afterward, he was really wiped out so we brought him back to his room where he took a seven hour nap. It's my night to sleep at the hospital, but I have a feeling there may not be a lot of sleeping going on. I hope the nurses are ready to be entertained!
The best news is that we haven’t seen any seizures and our plan is to continue on this path. It also looks like he has a little greater range of movement in his left foot. Maybe Rob and I are imagining it, but it sure looks like there is some improvement there. Prior to surgery, Evan had a slight weakness in his left leg, but it would sure be great if it's even less! This can happen after an epilepsy surgery but it's never expected, just a bonus if it does. We're looking forward to seeing him walk again tonight and can't wait for his therapist, Flavia, to do a post-surgery evaluation.
I have to say, this is the best Thanksgiving we have ever had. I would never choose to be staying in the hospital for a holiday, but the fact that Evan had his last surgery just before Thanksgiving seems very symbolic to us. There are so many things we are thankful for and Dr. Weiner’s skilled hands are at the top of our list this year. We are also thankful for the care Evan has gotten at
Right now I am thinking how fortunate we are and what a charmed life we have. Evan just had three major brain surgeries and he is doing amazingly well, but there are other kids around us who are still struggling and my heart goes out to those families. You develop bonds and relationships with people in the hospital and everyone pulls for each other and cheers when kids get well enough to go home. I'm glad to say we've seen a lot of kids get discharged and we're so happy for the families who leave us behind and we're eager to follow.
November 20, 2007
Third & Final Surgery Complete!
Evan's third surgery is complete and everything looks good! He's moving everything and talking, so that's a great sign that his motor strip is still intact. He's also asking for food and mad that we won't give him any -- we'll take both of those as good signs too. After anesthesia, the stomach is the last thing to wake up so if we give him anything to eat it'll probably just come right back up.
Dr. Weiner said the surgery was pretty dramatic and he removed about as much as he did on the last surgery. All the tissue he removed was abnormal and was the focus of the seizure activity we've been seeing this week, so he feels very good about the success of the surgery.
Right now Evan is sleeping and I'm hoping he doesn't wake up until his stomach does because it breaks my heart to tell him no. He didn't go to surgery until about 4:30 or 5:00 tonight, so it was a long day without food. He napped off and on before he was brought downstairs to the OR and when he woke up we all tried to entertain him to distract him from his hunger. We went through our repertoire of songs and drew a train on Aunt Becky's tummy with markers. Evan scowled through that, but we thought it was funny. Becky was a riot making the train move by rolling her stomach.
I'm going to go back to Evan's room now to watch him sleep. I remember bringing him home from the hospital after he was born and just watching him sleep for long periods of time. There have been many times here at the hospital that have reminded me of those early days. Evan looks peaceful and comfortable and I'm hoping he's feeling well and in good spirits in the morning.
Dr. Weiner said the surgery was pretty dramatic and he removed about as much as he did on the last surgery. All the tissue he removed was abnormal and was the focus of the seizure activity we've been seeing this week, so he feels very good about the success of the surgery.
Right now Evan is sleeping and I'm hoping he doesn't wake up until his stomach does because it breaks my heart to tell him no. He didn't go to surgery until about 4:30 or 5:00 tonight, so it was a long day without food. He napped off and on before he was brought downstairs to the OR and when he woke up we all tried to entertain him to distract him from his hunger. We went through our repertoire of songs and drew a train on Aunt Becky's tummy with markers. Evan scowled through that, but we thought it was funny. Becky was a riot making the train move by rolling her stomach.
I'm going to go back to Evan's room now to watch him sleep. I remember bringing him home from the hospital after he was born and just watching him sleep for long periods of time. There have been many times here at the hospital that have reminded me of those early days. Evan looks peaceful and comfortable and I'm hoping he's feeling well and in good spirits in the morning.
November 19, 2007
Final Surgery Tomorrow, 11/20
I'm am very happy to say that Evan's final surgery has been moved up a day, so Tuesday, 11/20 is the big day. We are glad to be able to move things up a little even if it is only a day. I have to say, it is great to be on the final stretch. Dr. Weiner feels really good about the final surgery and sounds confident about the outcome. We are confident too, but from the sidelines.
At the moment surgery is scheduled for sometime around noon, but Dr. Weiner will be in early in case an OR space opens up early. He said he'd be pacing until he gets in the OR. He seems excited to do the surgery and it's cool to see him so passionate about Evan's case. He really is a great man, in every aspect.
At the moment surgery is scheduled for sometime around noon, but Dr. Weiner will be in early in case an OR space opens up early. He said he'd be pacing until he gets in the OR. He seems excited to do the surgery and it's cool to see him so passionate about Evan's case. He really is a great man, in every aspect.
November 18, 2007
Waiting for Surgery
We only have a few more days to get through until Evan has his last surgery and we're ready. Evan is somewhat moody from the steroids, his head itches from the wrapping and he can't get out of bed because he has hardware in his brain. After the next surgery, he will return to the PICU for a day or so and if all goes well will be moved to the main pediatric ward quickly. Once he is out of the PICU, he'll be able to move around and go to the playroom. As long as he doesn't hit any snags he'll be checked out of the hospital a few days after that.
The doctors all feel confident about the surgery and we are still feeling optimistic about the results. As my mom said, we only need one miracle.
Having a steady stream of family here has been a huge help. Chuck was here first and created a good rhythm of starting us off with strong coffee and doing runs for whatever Evan wanted. Debbie G. came for a visit on Evan's worst day, but it was great to see her and she stocked me with trashy magazines -- I know all about Britney's issues, the tell-all book Tom Cruise is nervous about, the rumors about Angelina Jolie's pregnancy and the latest drama on Dancing With the Stars! Bob and Beth brought my mom and Aria to NY on their way to visit family and it was really great to have them with us. This is a hard place for Aria to be, but I do think it was good for both her and Evan to be together for a few days. We didn't feel like we had any quality time with Aria or my mom but having them here was wonderful. Rob's sister Becky came the day before my mom and Aria and she just extended her trip a few days, so we still have a runner for Evan and she does jumping jacks and crazy dance moves to make him laugh. I like it best when he holds out to laugh to see how far she'll go!
After Evan's surgery, Chuck is coming back up with Aria and our nephew, Roman. They will all be here for Thanksgiving and in spite of where we'll be, I think this will be the best Thanksgiving ever. It will be the beginning of a whole new existence for Evan.
The doctors all feel confident about the surgery and we are still feeling optimistic about the results. As my mom said, we only need one miracle.
Having a steady stream of family here has been a huge help. Chuck was here first and created a good rhythm of starting us off with strong coffee and doing runs for whatever Evan wanted. Debbie G. came for a visit on Evan's worst day, but it was great to see her and she stocked me with trashy magazines -- I know all about Britney's issues, the tell-all book Tom Cruise is nervous about, the rumors about Angelina Jolie's pregnancy and the latest drama on Dancing With the Stars! Bob and Beth brought my mom and Aria to NY on their way to visit family and it was really great to have them with us. This is a hard place for Aria to be, but I do think it was good for both her and Evan to be together for a few days. We didn't feel like we had any quality time with Aria or my mom but having them here was wonderful. Rob's sister Becky came the day before my mom and Aria and she just extended her trip a few days, so we still have a runner for Evan and she does jumping jacks and crazy dance moves to make him laugh. I like it best when he holds out to laugh to see how far she'll go!
After Evan's surgery, Chuck is coming back up with Aria and our nephew, Roman. They will all be here for Thanksgiving and in spite of where we'll be, I think this will be the best Thanksgiving ever. It will be the beginning of a whole new existence for Evan.
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