November 29, 2007
We used to have to cinch all the waistbands of his pants and they still fell down, now nothing fits! His last steroid dose is tomorrow so I'm guessing things will start to get back to normal in a few weeks. For now, we just laugh and feed him -- he's so hungry!
As you can see they didn't shave his head for the surgery, just the incision line. The scar itself is pretty big but is healing well. I may post photos in a few days for the gruesomely curious, like myself. I was a little nervous about seeing Evan's head for the first time but it actually looks much better than I expected.
We've learned a few things being in New York for 3 weeks, mostly involving food:
--There is a lot of good pizza and a lot of bad coffee in the city, you have to know where to go.
--You can have your dirty laundry picked up at your door and returned clean and folded by the end of the day. The huge bonus is that it's only a few dollars more than doing it yourself at a laundromat.
--You can have a grilled cheese sandwich delivered to your door from any Deli at any time -- we seem to hit the 5am slot.
--At the pizza shop you can just ask for "a slice" if you want cheese only, no need to put in extra descriptive words, like "cheese".
--McDonald's will deliver if you order a minimum of $20 -- I guess this is good?
--We never found a restaurant that doesn't deliver -- this is definitely good!
--If a cabbie honks at you while you're crossing the street you're fine; if the cabbie doesn't honk, pick up the pace or you may get hit.
--City kids are afraid of dogs and people are shocked that Evan isn't scared at all by them.
--And most of all, New Yorkers are really great. We have met so many nice people while we've been here! I'm sure there are people here who fit the New York stereotypes, but we honestly haven't found that to be the case. I'm so looking forward to going home, but there is a part of me that will miss New York.
November 27, 2007
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 25, 2007
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.
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
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
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
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
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
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.
November 17, 2007
After the first surgery, Dr. Weiner inserted a depth probe to about the middle of Evan's brain, where the two sides divide. He inserted grids on the surface of the brain too, but the depth probe goes in much deeper and has 8 points on it that collect seizure info. The advantage is that it is getting information from deep inside Evan's brain instead of from the surface. This was extremely important in Evan's case because Evan had three tubers in this area and Dr. Weiner was able to put the probe through all three. The probe ended in the tuber deepest in and this is where the seizure activity was originating in Evan's brain. Up until this trip, every doctor thought the seizure activity was coming from the largest tuber closest to the surface. The image below is of the depth probe in Evan's brain after the first surgery. The white area close to the center of the brain (where the depth probe ends) is the tuber causing all the trouble.
If you look really close, you can see a depth probe on each side of the area removed. They go deeper than what you can see in this image and are picking up additional seizure activity. The final surgery will be to remove a little more brain tissue to eliminate the rest of Evan's seizures and remove all the grids and probes.
The crazy thing is that Evan is completely normal after having this much of his brain removed. His spirits are effected by all this brain invasion, but you'd never guess by talking to him or interacting with him that he just had two pretty major brain surgeries.
November 16, 2007
Having Aria here has directly improved Evan's mood and I'm hoping it lasts when she leaves for a few days! She'll be back up here for Thanksgiving, but we don't want her to be here on the day of surgery, it's just too much waiting around.
We spoke with all of Evan's doctors this morning and they are seeing a decent amount of sub-clinical seizures (seizures with no visible signs) on the EEG, and all the seizures are all coming from the area surrounding where the tubers were. This is good because it means Dr. Weiner is getting a lot of clinical data which will help him fine tune what additional tissue needs to be removed. Also, there are no seizures coming from unexpected regions of Evan's brain. After the third surgery they will remove the grids and close everything up. Depending on how quickly Evan bounces back, he'll be moved onto the main pediatric unit. This can happen in just a couple days, but it's different for each person so we'll just have to see how he does. For the moment, Evan's surgery is scheduled for Wednesday, 11/21, but Dr. Weiner is hoping to do it on Tuesday instead. He'll have to go through some negotiations to get OR space, but we're hoping it won't be too hard with the holiday coming up.
November 15, 2007
Evan knew Aria and my mom were on their way up for a visit (thanks Bob and Beth for bringing them up here!) and he was really looking forward to seeing them. When we knew they were close, we told Evan that Aria would be here when he woke up after the MRI. As he awoke, his first words were, "I want Aria". They really do have a special bond. Evan cried when he saw her and then was in really good spirits for the rest of the night. He requested McDonald's for dinner and Aunt Becky (who arrived last night to relieve Uncle Chuck) went running to do Evan's bidding. When she got back he was fast asleep.
The not so great news is that Evan is still having seizures. But the up side is that there is still one more surgery and Dr. Weiner will be able to remove more and hopefully end Evan's seizures once and for all. This is pretty typical with a three-stage surgery so it wasn't a complete surprise, but we were hoping Evan would be done! We should know more tomorrow after Dr. Weiner looks at the MRI and EEG data, but we do know the next surgery will be more involved than just removing grids.
For now I'm just happy Evan is in good spirits and still feel we are on the right track. Seizure eradication, here we come.
November 14, 2007
After surgery, Dr. Weiner said he was really excited at how well everything went and he was beaming. He couldn't have been more encouraging. Evan woke up easily and was able to move everything and respond to commands. This is huge because a big concern was the possibility of a deficit on his left side and it looks like everything is exactly as it should be. We'll know more in the coming days, but so far everything looks good.
Dr. Weiner put the grids back in to do more monitoring and the final surgery is scheduled for 11/21. The last surgery gives him the option of removing more brain tissue if necessary, otherwise it'll be a quick surgery to just remove the grids.
I have to say that when we got to the OR I felt so good about everything that I wasn't even worried. It just felt right. Some people say moms have a special intuition when it comes to their kids. I don't know if that's true or not, but I just felt so good waiting for the surgery to be completed, not at all the emotion I'd expect to be feeling.
When I walked out of Evan's room to write this he was sleeping and Chuck just came out and said Evan is sitting up, eating ice and saying he's a rock star! I'm going to go see my rock star now.
November 13, 2007
We are not a particularly religious family, but we really appreciate our friends and family who are. Evan has been put on a lot of prayer lists over the last couple years and there have been a lot of prayers going up the ladders of multiple faiths: Catholic, Jewish, Christian, Protestant, Mormon, Muslim, Hindu, Buddhist, Quaker, Lutheran, Sikh, Pentecostal, Greek Orthodox, Hasidic and probably some I don't even know about.
We just want to thank everyone for their prayers, well wishes, good vibes and positive energy in whatever form they come in. Please keep it coming, tomorrow is the BIG day!
We feel extremely confident about the surgery and I think tonight we saw our last seizure.
November 12, 2007
Evan's surgery is scheduled for Thursday, 11/15, but there is a chance they may do it on Wednesday, 11/14, instead. They have gotten all the clinical data on seizures that they need, so if they can arrange to get the OR they'll push it up a day. It's good news that Evan has been having seizures while we've been here because it gives the doctors a more clear picture of what to remove. There are kids who come in for this and have the first surgery, then never have a seizure and end up going home without going any further in the surgical process. I'm just glad we're not in that situation. We've heard more than once that Evan is following the textbook and we're hoping he keeps it up all the way to being seizure-free after surgery.
Yesterday was a little rough. Evan pretty much slept all day and then threw up a couple times in the evening. He was hard to wake up but his vital signs were good. As a precaution, they sent him downstairs to get a CT scan and after the test he perked right up and was pretty cheerful for a little while. The CT was fine and the nausea might be from the medication so they also gave him something to settle his stomach. One of the hardest things has been seeing Evan so sad and upset -- it's just so out of character for him. We find ourselves just waiting for those moments where he will smile or giggle. Then we sigh in relief, hoping it will last as long as possible before we have to wait again.
McDonald's chicken nuggets seem to brighten his spirits and Uncle Chuck has offered to go to McDonald's ten times a day if he has to! Evan also sat up and requested hot chocolate, so Chuck was off and running for that too.
November 10, 2007
He's napping at the moment and we're hoping he's in better spirits when he wakes up.
Rob's brother Chuck came up to NY yesterday and it has been great to have him here. Evan has enjoyed having him with us and Rob and I were able to leave the room to look at the MRIs with the surgeon. It really is a huge help to have an extra adult in the room.
Evan had an MRI before yesterday's surgery and another one this morning. The purpose of the second MRI was to view the placement of the grids Dr. Weiner put on Evan's brain to map his seizure paths. We were able to seen all the grids on the MRI and it was pretty cool -- in a geeky, medical way.
Now we wait for seizure activity. The goal is to capture enough seizure activity through the grids to be able to give Dr. Weiner even more specific information about the area he will remove. So, this is the time we hope for seizures. The second surgery is scheduled for Thurs., 11/15, so if Evan is consistent, They'll have enough info by the end of the weekend to make a solid evaluation.
November 08, 2007
Dr. Weiner said he was able to see the tuber he's going to remove and feels really confident about the next surgery. He expected this surgery to take about three hours and he was done in half the time! Evan was in his room at 3:00 and he's pretty wiped out and sleeping soundly so far.
That's the basic update, I'll post more later.
November 07, 2007
November 05, 2007
When we notice the differences in Evan, we start wondering if it's the drug or a side-effect of the seizures themselves. Only when he comes off a drug do we really see clearly what the real culprit was.
We just completed a wean off Topamax and it's astounding to see how different Evan is now. I feel like we did him a real disservice keeping him on that one for as long as we did. He was only on it a few months but it really slowed him down mentally. In the last week we've seen him become much more engaged and talkative...actually he doesn't shut up now. He's creating imaginary games about going to the moon in his rocket ship and has his attention span back. He hadn't been playing with his trains as much and now he's at the train table for over an hour at a time. He's having long and involved conversations with us instead of one or two sentence conversations.
I'm happy to see our son's true personality is back, I just wish we'd pulled him off Topamax sooner.