PT, PT and more PT

Physical therapy is the name of the game now. Evan has PT four times a week and his therapists are working him hard. He thinks he's playing, and that's pretty much the only way it'll work with kids. We've seen a lot of good progress and he improves in some area every day. He's still not as steady as he was pre-surgery, but we expect him to get back to where he was at a minimum. We are hopeful that he will surpass his prior goals, but we're all taking it one day at a time.

Watching Evan reminds me of when he was learning to walk and everyday there would be something new. We've watched him go through those milestones all over again: wobbly steps, standing up with assistance, walking with confidence, managing stairs, standing up independently, running, etc. He's still pretty wobbly when he runs and has a lot of strength to regain in his legs, but he has a lot of energy and that works in his favor!

We're Home!

We are home and so happy to be back. Aria and Evan were really excited to see each other and it was so cute to see them together after being apart for a week. It is so cool to see the close relationship they have and it makes us feel so proud.

Being in the hospital is such a surreal experience -- life just stops and everything revolves around when doctors make their rounds, medical tests and hospital activities. Night and day blend and you completely loose track of the day of the week. You bond with strangers going through similar and different experiences at the hospital.

Since we were just in the hospital, Evan got lots of visits from PICU nurses and they all made him feel so special. There really is something special about someone who chooses pediatric nursing as a profession. We have met too many nurses, but the ones who work with kids are really special people who probably never even know how significantly they impact their patients.

We are again thinking about how fortunate we are to have such a strong support network, and although we're ready to not need it, we are so thankful! Uncle Chuck came through again (as always) and hung out with Aria while we raced off to NY. She may be ready for us to leave again since she's pretty much gotten her way all week -- she really had a blast with him!

Our phones have been ringing a lot and we appreciate all the calls and emails. Hopefully when we get a couple decent nights of sleep we'll be able to catch up with everyone. Evan is doing well again and we are looking forward to putting all this behind us and only going back to NYU Hospital for scheduled visits!

Toxic Evan

This week has been a whirlwind we didn't expect, but we're so glad to be at NYU Hospital to get everything sorted out. The big news is that Evan is toxic and in this situation, that is good news. Dr. LaJoie suspected it and the tests confirmed it. Basically, he processed the meds differently than they would have expected. When he left the hospital after surgery his level was 9 (a little low) and they raised the meds a touch to get it up a little. For whatever reason, the level skyrocketed for him. Dr. LaJoie was expecting the level to be around 18, indicating it was a little high and it came back as 30! That made a diagnosis pretty clear and we have begun the process of reducing Evan’s meds. This means the seizures were provoked (by meds) and that is great news. We’ll be in the hospital a little longer and hopefully when the meds are worked out we won’t see any more seizures.

The hospital is really busy with epilepsy patients this week and they are diverting patients to other hospitals, so we’re just happy we were able to get in. Dr. Weiner told us he had to cancel two surgeries this week – I can’t imagine getting that call! Unfortunately, there wasn’t a room available that is hard-wired for the Video EEG machine so they had to bring the VEEG equipment into the room. Being in a hard-wired room gives you the freedom to unplug and walk down to the playroom and plug into the wall there to continue to be monitored. Evan was starting to get a little punchy sitting in bed all day, and we moved to a hard-wired spot this afternoon and he was happy to get to move around a little more and go to the playroom.

Luckily, Evan has been in a pretty good mood and that really makes things easier on us! He likes being naked and doesn’t want to wear anything so he’s been hanging out in a diaper (we’re back to the drawing board with potty training since surgery). I thought I’d share this photo from last night of Evan multi-taking: VEEG, playing with trains and watching TV. Now all he needs is someone to fan him and feed him grapes!

We finally got him in clothes today – you can’t walk around the hospital naked! At least that's what we're telling him! Things are looking good and we're waiting for the news that we can go home.

Evan's Back in the Hospital

Today I am writing with a heavy heart. On Sunday, Evan had three seizures and then had two more on Monday. The seizures were a little different: longer, with dizziness and vomiting and complete exhaustion afterward. We talked to Dr. LaJoie on Monday morning and she wanted to hook him up to a video EEG in the hospital so we quickly packed a bag, called Chuck to ask him to stay with Aria, went to Aria's school to let her know what was going on and headed toward NY.

We arrived at the hospital at 3:30 pm and were in his room on the Pediatric floor within an hour. They drew blood to check medication levels among other things. Next, Evan had a CT scan to make sure everything still looked good from a surgical perspective (it does). Finally, at around 10:00 pm the EEG leads were on and he was hooked up to video. Evan was up until around 11:30 pm and seemed to feeling pretty well. We haven't seen any additional seizures, so we're just watching him for the time being.

After we got set up in the room, Rob went to the PICU to say hi and a few nurses came over to the main floor to see Evan. He has a lot of friends in the hospital! Sadly, there are families we left behind who are still here, but we were happy to see that the little girl we shared a room with in the PICU is awake. She arrived a few days after us and was seizing nonstop. The doctors basically put her in a medically induced coma in the effort to calm her brain down. We were so happy to see her awake and get a glimpse at her beautiful brown eyes. They will still be here over Christmas but they are hoping to take out her breathing tube today or tomorrow and her mother will hold her for the first time in over a month. This sounds so sad but it is really happy news.

A steady stream of doctors came in to see Evan this morning. Evan's neurologist, Dr. LaJoie, thinks there is a good chance that Evan is seizing due to the Trileptal he's on. Medications effect everyone differently and when the level is too high it is considered toxic. There are set levels known to cause toxicity, but it's also possible that the drug is toxic at a lower level for Evan. The bloodwork results should be done by Thursday, but until then, Dr. Lajoie will treat Evan as if he is toxic and begin adjusting the meds a bit. She feels the symptoms we're describing point to toxicity and we're hoping that is the case.

For the time being, we are settling in for a somewhat extended stay in New York. Evan will be in the hospital at least until Friday. Last night Rob and I both slept at the hospital but a social worker here arranged to get a room for us at the Ronald McDonald House in Manhattan. Usually the Manhattan Ronald McDonald House is reserved for cancer patients, but they had space available so we got lucky.

Our current challenge is trying to find a place that will deliver a decent cup of coffee! Our runners (AKA Chuck and Becky) aren't here so we're on our own! Coffee isn't a problem, it's cappuccino -- all the delis have the machines with the push button cappuccino and we're looking for the real deal!

I'll update when I can, hopefully with good news!

Two Week Post Surgery

It has been two weeks since Evan's final surgery and he hasn't had any seizures (knocking furiously on wood) and is doing really well overall. He still has a decent amount of weakness on the left side but he's getting stronger every day. He has a lot of trouble with stairs and still can't stand up unassisted if he sits on the floor, but his train table has offered him a ton of PT opportunities he isn't even aware of. He stands at the train table, walks around it, reaches across, bends over when he drops trains, etc. Evan doesn't know it, but his passion is going to heal him -- body and spirit.

If anyone asked me to define myself in one word, I would choose "optimist". This is my gift and my curse. My gift because I can almost always see the up side of any situation and can turn any insult into a compliment. My curse because I don't like to admit when things are really rough. I never want to come across as a whiny complainer and it isn't productive anyway. I will say though, the three weeks we spent at NYU Hospital were the hardest weeks of my life. Every day was hard, each for a different reason. We were challenged as a family in ways we could have never expected and are so blessed to be surrounded by so many people who have offered support in many ways. I've said it before, but want to say again, thank you.

Chickens Dig Scars

We are back home and thrilled to be here! On Friday morning we had an appointment with Evan's surgeon, Dr. Weiner, and we flew home in the afternoon. We had been coaching Evan to say "Chicks dig scars" but instead he said "chickens dig scars". I guess to a 4-year-old the two sentences make about the same amount of sense. We can't take credit for the phrase though...before we went to NY for Evan's surgery, Andrew told me to tell Evan, "scars are cool and chicks dig 'em". Apparently what Andrew didn't know is that chickens dig scars too. Go figure! If you don't believe me, just ask Evan.

We haven't seen any seizures since the surgery which is really tremendous. We're hoping things continue in this way! When we were in Dr. Weiner's office, we asked Evan what he thought about Dr. Weiner taking his seizures away and he said, "That's cool...Dr. Weiner, I think that's a good magic trick!" We think he's right, it is a pretty good magic trick, but no smoke and mirrors for this one -- just pure magic!!

Belly Boy

I know I've mentioned how much Evan is eating, but I thought I'd offer up some visual proof. He has gained 5 lbs. in the last week and a half -- that's almost a 20% increase in his weight! I snapped a few shots today with my camera phone...

You don't get cheeks like this eating carrot sticks, although he eats those too!

I call this his bowl full of jelly.

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'll be home Friday night!

New York has been a surreal and amazing experience, but we are all really looking forward to being home tomorrow night. We'll meet with Dr. Weiner for a follow-up appointment and fly out in the late afternoon. It'll be bedtime by the time we get home, but that doesn't matter, we'll be home!

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.

EEG & Follow-up Appointment

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.

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.

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.

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 NYU Hospital – everyone here has been amazing. We feel fortunate to have such a strong support network of family and friends who have been with us through a lot of challenges. People often ask us how we manage everything and the real answer is that we don’t do it on our own -- somehow we have managed to surround ourselves with a lot of fantastic people who probably have no idea how much they have helped us at various points in this process.

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.

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.

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.

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.

Brain Invasion

Being visual people, Rob and I always get copies of Evan's MRIs and look at them with our untrained eyes. It used to be we had no idea what we were looking at, but Evan's most recent MRIs are pretty dramatic and it's pretty easy to find what we're looking for. Since I have the CD of MRIs, I thought I'd share these really freaky pics of Evan's head...

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.

After the second surgery another MRI was done and you can see the area removed in the image below.

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.

Evan is Charming the Nurses

Today, I am happy to say, we saw longer glimpses of Evan's true personality. He spent several portions of today flirting with and charming nurses. When he's feeling ok, he's really funny! This morning, at 2am, Evan invited one of the nurses to go on a rocket ride to the Moon, but he told her she needed a space suit first, then he told her it was on backwards! I guess this was her first mission, because she forgot her helmet and then put it on backwards too. After she was suited up they blasted off and visited the Moon and Pluto.

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.

MRI

Today Evan had an MRI to get a picture showing the new placement of the grids Dr. Weiner put in yesterday. He couldn't eat because he needs anesthesia with MRI and that was pretty tough because he didn't get brought down for the test until 3:30. That's a long time for a hungry kid to wait to eat!

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.

Our Son is a Rock Star!

Evan is out of surgery and everything went very well!!! The OR was available earlier than expected, so Evan's surgery was moved up. We were glad to have him go in early because he was complaining about being hungry and it was nice to move things along more quickly for him.

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.

Surgery is Tomorrow

As I mentioned earlier, Evan produced a lot of seizures and the doctors got all the info they needed to move forward with surgery. The stars were shining on us and an OR space came available for Evan for tomorrow, Wed. 11/14. Evan will probably be brought downstairs for surgery a little after noon.

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.

Still Grumpy

Evan has moments of being in a good mood, but is generally grumpy. He asks to go home and continues to ask for Aria, but the good news is that Aria will be here next weekend. We've had offers to get her here earlier, but I think we're going to stick with the original plan because we don't really want her here the day he has surgery.

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.

Evan Misses Aria

Today has been a little rough. Evan is having some pain from the surgery and his stomach is really bothering him. He is on steroids to reduce swelling and they tend to irritate the stomach so that's probably what's going on. This morning my mom called and Evan got to talk to Aria. We thought this would be great for him, but it ended up making him really sad. He spent the next 3 hours fluctuating between whimpering and actually crying because he misses Aria. It was so sad to see and Rob and I felt helpless since he latched on to the one thing we really can't do anything about. We can get him more morphine but getting Aria here instantly is a little tricky. She'll be here next week, so he'll just have to settle for the extra morphine for now!

He's napping at the moment and we're hoping he's in better spirits when he wakes up.

Finally he smiled!

The doctors and nurses have been pleased with Evan's recovery and we have too, but it's been hard to see the expression of pain on his face for the past couple days. Today he smiled and actually spent about an hour this evening joking with us and being very animated. We were so happy when we heard him giggle for the first time. Evan spent most of the yesterday and today sleeping, but we think tomorrow will be "game on!"

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.

Dr. Golden Hands

Thank you everyone for your posts to the blog, phone messages and good vibes! Evan had his first surgery today and everything went well. Dr. Weiner has done a decent amount of work in Italy and they have a nickname for him that translates to "golden hands". Can't ask for more than that!

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.

We're in NY

We got up at 4:30 this morning to fly up to NY and although it was a bit stressful getting everything together last night, we were glad to have been here early. It gave us a chance to get settled and make sure everything was in order for tomorrow. It is, and Evan will be at the hospital at 6:45am tomorrow morning. He'll get anesthesia, have a MRI and then go directly into surgery. Whew. We are expecting him to be away from us for about 5 hours, so hopefully we'll have some info by 2:00pm about the first surgery. Wish him luck and we'll post when we can tomorrow.

ta-ta Topamax

One of the things about shifting Evan on and off anti-epileptic drugs that always surprises me is the side effects we see, or more frighteningly don't see. It is not uncommon for a drug to have some seizure control for a couple weeks and slowly the seizures ramp up again. The drugs all effect him differently, causing sleepiness, aggressive behavior, insomnia, cognitive regressions or just a general dulling of his personality. The thing that makes it tough is that the changes happen slowly over time, so they are easy to miss.

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.

Neurotic? Me?

Ok, so I totally got busted for being a neurotic germ-o-phobe this week. We've managed to get Evan to a point where he is pretty healthy -- no small feat at the beginning of flu season -- and we're trying to maintain this healthy level until surgery. Can you say quarantine?

This week Evan had an appointment with his pediatrician, Dr. Hoang, and even the best pediatric offices are life-size petri dishes. A serious danger! I thought this through though and had my mom wait in the car with Evan until his name was called. We quickly whisked him through the waiting room and into the germ-infested examining room. Once in the exam room, I promptly began wiping down every surface with the Clorox wipes I smuggled into the office, working as quickly as I could before Evan touched too many things.

Everything was going exactly as planned. I was feeling pretty good about my Clorox wipes idea and had no problem ignoring the smirks I was getting from my mom. So, there I am, on my knees wiping away and in walks Dr. Hoang! Busted. Neurotic.

This is what I thought until I laughed and admitted what I was doing and it turns out Dr. Hoang thinks I should be even more neurotic! I have been given carte blanche from a medical professional, so look out! She said I was completely sane for being super cautious and that I should ramp it up. She said to give Evan a bath as soon as he gets home from his appointment and put Aria directly in the tub as soon as she gets home from school each day!

We won't be installing a portable biohazard decontamination shower outside our front door, that would be crazy...plus it's too expensive, I checked.

Pre-Surgical Meeting and Testing

Yesterday was a really big day and we are all exhausted today. On Sunday, Rob, Evan, Chuck and I went to NY in preparation for a full day of testing and appointments for Evan. We stayed at the Ronald McDonald House and my mom stayed in VA with Aria. Having Chuck with us on this trip was extremely helpful. It allowed us to really focus on our conversation with Dr. Weiner and Evan loved having so much special time with Chuck!

Our first stop was pre-operative testing. They checked Evan's vitals, got his medical history and drew blood for a full work-up. Although Evan wasn't thrilled about having blood drawn, he did really well and was so cooperative. Next, we met with a doctor from the anesthesia team. She was informative about what to expect the day of surgery and praised us for having already been to a cardiologist and having the report for her. We were just following directions! Apparently, if we hadn't done that in VA, she'd have sent us to get it done at NYU Hospital while we were there. She also said if anyone comes to our house with a cold or a cough, we should politely send them away. If Evan isn't healthy, the anesthesiologist can veto any surgery.

Our final and most important appointment was with the neurosurgeon, Dr. Weiner. While Evan was having testing done, Dr. Weiner's office called to let us know he was running a half hour late, so we took our time heading over there. When we got to his office, Dr. Weiner came out to tell us he had two emergency brain surgeries so he needed to push our appointment back a bit, but would meet with us between the surgeries. He seemed very calm and relaxed while he told us this, but it seemed pretty dramatic to us!

Before we went to lunch to fill the time prior to meeting with Dr. Weiner, we met with the nurse practitioner in his office who answered some of our basic questions...we don't have to shave Evan's head...they will shave the incision site only...the good bed in the PICU is by the window and she'll try to use her pull to get it for us...Evan will be on IV antibiotics and steroids the whole time he's in the PICU to keep swelling down and avoid infection...He'll have an MRI immediately before the first surgery and another one the next day to see exactly where all the grids are...the steroids will make Evan ravenously hungry...etc.

After lunch we went back to Dr. Weiner's office and Evan played with a couple kids in the waiting room. We used ample amounts of anti-bacterial hand wipes and gel throughout the day and actually used the entire container Chuck brought with him -- it was in a neat spray bottle and much cooler than the ones we buy!

Dr. Weiner got back to his office, looking every part the surgeon in his green scrubs and hair sticking up -- presumably from the hat he was wearing during surgery. He was great to talk to and discussed the surgery in detail. He's personally done about 500 epilepsy surgeries and 45 of them were TSC patients. We were a little surprised the number wasn't higher on the TSC surgeries, but we have to remember that this is a rare condition. He went over lots of statistics and NYU fares very well. We had already decided to do the surgery at NYU and much of what he said was reassuring and consistent with what we had already researched. Generally speaking, Dr. Weiner seems very down-to-earth and in spite of his reputation, very humble. He is an extremely likeable person without any attitude we might have expected from a highly accomplished neurosurgeon.

He also has a sense of humor...I came up with this idea of challenging him to a game of Operation. I ran my idea past a few people and some thought it would be disrespectful, while others thought it would be funny. They are probably both right. Since he had a second emergency surgery to perform, I just presented the game to him -- he seemed quite amused and happy to get the Operation game. He said nobody had ever given him Operation before and I was a little surprised -- it seems like such an obvious thing to give a surgeon! We pointed out that there is a "brain freeze" he can remove. He said he's going to bring it home to play the game with his kids...we're rooting for Dr. Weiner!

Cadiologist

Prior to surgery we had to take Evan to the cardiologist to be checked out. This required of any patient with TSC because many of these patients have heart defects along with the litany of other issues that come along with this disease.

Evan never got his heart checked while we were in the testing process to see the extent of the organ involvement. At the time he was phobic about the medical community and any big issues with his heart would have shown up by then, so we put it off a bit. We just never got around to following up on that.

We had a little anxiety about what the results would be, so Rob and I were just a little on edge, hoping not to add anything new to Evan's growing medical chart. We were in the office for two hours while Evan had an EKG and a sonogram of his heart. When the doctor looked at everything and came back in the room he said, " Evan's heart is absolutely perfect."

Whew!

Insomnia

Ever hang out with a 3-year-old with insomnia? You haven't lived until you have!

We've been in the middle of a medication switch -- off Depakote and onto Klonopin. Depakote has a side effect of blood-clotting, so Evan has to be off that one prior to surgery. The docs don't want to leave him vulnerable to more seizures than he's already having so we're introducing Klonopin. Klonopin normally wipes people out, but sometimes it induces insomnia, which is what we're seeing in Evan.

Just to add something else into the mix, the Topamax Evan is taking is making him aggressive. This is the second drug Evan has been on that has induced this lovely side effect.

So, our house has been interesting lately to say the least. Although it drives us a little crazy to have Evan repeatedly get out of bed at night, the up side is that he's really funny about it. He comes out of his room to sing us a song, tell us he forgot to say how much he loves us, complain about his pajamas as he stands naked in the doorway, or simply give an animated roar. He has surpassed the old "I'm thirsty" technique for getting to stay up later and moved onto more sophisticated methods!

We talked to Dr. LaJoie, who switched his meds around a bit, so we're hopeful that it will help....soon!

Tonight Evan came up with a completely new idea to avoid sleeping. He appeared in the family room doorway, naked, and complained that his bed was wet. Oh, and he was a little wet too. My thought..."uh oh". So, yes, he took his clothes off and peed in his bed. But Evan is much more creative than that. There was a plastic container in his room, so he put that on his bed, stood on the mattress and tried (with moderate success) to pee into it.

Adults with insomnia? Boring.

We Have to Get These Seizures to Stop

These are Evan's words, and he's right, we HAVE to get these seizures to stop! This is what he said last night while he was having a seizure. We are so thankful that Evan doesn't loose consciousness while he has seizures, but it was heartbreaking to hear him say, "we have to get these seizures to stop" while his little body shook.

Yesterday was a record day for Evan and we counted 30 seizures. This is not the type of record we want him to go for! Today hasn't been much better, but we're hoping things will calm down soon.

We are preparing to begin the process of introducing a new drug, Klonopin, and weaning him off Depakote. Evan can't be on Depakote for surgery because it is known to have a blood clotting effect. A wean takes a few weeks so we'll be starting to get him off Depakote as soon as we pick up the Klonopin at the pharmacy. Hopefully that will be tomorrow, but the pharmacy had to order it, which seems to be the routine for any new AED we try.

My Brother Ate My Homework

Not every kid can really use that excuse, but last night Aria was working on her homework and stepped away from it for a few minutes. Evan saw his chance and quickly picked up the paper and took a bite out of it. Rob and I were somewhere between shocked and amused and Rob wrestled the paper away from Evan, getting most of the bits out of his mouth. After it dried we taped it back together and it's almost as good as new. Aria was upset and first but then saw the humor in telling her teacher her brother ate her homework!

When Evan does stuff like this I always think it has something to do with his medication, but how many times can you use that excuse before people think you're just making that up? And what if it isn't the medication! The last one he was on definitely made him aggressive and now he's on a new drug but I'm not sure if it's the drug or not. My gut has been telling me for a while that this med isn't working for him, from a personality standpoint. Maybe we need to look at that more seriously now. The medication certainly isn't controlling his seizures.

Lots of News

We've had so much going on that our lives have been is a spin for a while. I'm not sure things will slow down anytime soon, but the latest info is this...

UCLA
We talked to the epilepsy team at UCLA over the phone and they presented Evan's case at their weekly meeting. They agreed that surgery is the next step and would be willing to see us and perform the surgery if we wanted to make the trek out there. Rob and I are not sure there is a real compelling reason to go to UCLA for this. We are at the point of comparing two groups of doctors at the top of their field, but with very different philosophies on surgery. Either UCLA or NYU would probably do an excellent job so that doesn't make the decision easier. We have decided to move forward with NYU after talking to a lot of doctors, hospitals and patients. Most families we've talked to have been really happy with NYU, but no hospital is perfect and we did find a couple patients who were not thrilled with the experience at NYU. I'm actually happy to know what issues other families have had so we can work hard to avoid repeating their experiences. We've been really happy with NYU so far and I guess when you get to this point you have to go with your gut.

MEG Scan
We still haven't heard from the insurance company about covering the MEG scan and Evan had it on Monday, so I guess it doesn't matter if they pre-approve it or not. Hopefully we won't be stuck with a big bill, but we don't plan to give up easily so they may as well just approve it now. We should have results from the MEG in two weeks.

Surgery
Dr. Weiner, the neurosurgeon, called me back and he was really great to talk to. He seemed really down-to-earth and set up a "tentative" date for surgery. It's on his schedule as tentative because he doesn't usually schedule surgeries before meeting with the patient. Minor technicalities! I should mention that Dr. Weiner is a pretty hot shot neurosurgeon and I have yet to hear anything but positive feedback on him. He is highly respected by his colleagues and adored by his patients, so I don't think we could ask for more than that. Here's what we have set up:

Oct. 22 - Intro meeting with Dr. Weiner & pre-surgical workup

Nov. 8 - Surgery - invasive monitoring / grids applied directly to brain
Nov. 15 - Surgery - remove tuber from brain
Nov. 21 - Surgery - remove more if necessary; doctor will decide on Nov. 15 if this surgery is needed

NYC Accommodations
We contacted FACES, a non-profit that works directly with the Epilepsy Center at NYU Hospital and they have three apartments available for anyone staying at the hospital for over a week. The apartments get booked early because it's a free place to stay in Manhattan, just minutes from the hospital and we were lucky enough to get a reservation for the whole stay. We'll be in a studio apartment about three blocks from the hospital. We feel very fortunate to have found this resource! A studio apartment in NYC is most likely pretty small, but we won't be there much and Rob and I will be taking turns sleeping at the hospital with Evan.

Cell Phone Nightmare

So, the other thing we were trying to get taken care of this week is the scheduling of Evan's surgery. We decided to get something at least tentatively scheduled at NYU to give us a date to work around, especially since we are leaning toward NYU. We have really come a long way -- I never thought we would be to the point where we'd feel better having a surgery date planned.

I've been walking around all week, carrying my cell phone like it's a precious jewel because the only person who can schedule this surgery is Dr. Weiner, the neurosurgeon at NYU, and I didn't want to miss his call. Of course, that's exactly what happened when both he and his secretary tried multiple times to call my cell phone which was rerouting to a fax machine. ARG! They had the right number and were calling from two different phones so I have no idea how that happened. As wonderful as modern technology is, it's not infallible I guess. Not a huge deal in the big scheme of things, but a little frustrating. Dr. Weiner is in the office on Mondays (surgery Tues. - Fri.) so hopefully we'll catch up then.

Big Week

This was a really busy week. On top of having Aria's first day of kindergarten, orientations at Evan's preschool and the craziness of trying to cram 5 days of work into 4 days because of Labor Day weekend, we also had a lot of medical things to take care of.

We called the Epilepsy / TSC Dept. at UCLA and talked with them about their surgery process. UCLA and NYU have very different philosophies regarding this type of surgery. NYU's is very aggressive - the most aggressive in the world, taking patients no other hospital will consider, although this is not Evan's situation. UCLA's approach is a less invasive and gentler approach (if you can call brain surgery gentle) relying more on pre-surgical testing and not doing invasive monitoring. Both are excellent hospitals and doing revolutionary work in this specific area of neurosurgery. UCLA was wonderful to talk to and we sent them Evan's records and CDs of scans -- they will be presenting Evan's case to their Epilepsy team on Monday.

We finally received the Letter of Medical Necessity from NYU to submit to our insurance company for our final pre-approval appeal for the cost of the MEG scan Evan will be having on Monday, 9/17. It took a little time to get the letter because Evan's file was not in the office while his case was waiting to be presented to the Epilepsy team at NYU. I have been working with the HR rep who deals directly with the insurance company and she is getting the packet of information to her contact who will escalate Evan's case so we should have an answer before the end of the week. Nothing like waiting till the last minute to get this taken care of! It they deny the appeal we will start the fight all over again with the claims dept. after the test has been done. We will see Dr. LaJoie on Friday, 9/14 during this trip to NY. We'll be staying at the Ronald McDonald House again and will bring Aria with us on this trip. The up side is that we'll be in NY for the weekend and will be able to do some fun stuff with the kids.

That's My Brain!

On Aria's first day of kindergarten the principal hosted a coffee for any parents who wanted to stop in. It was in the library and there were several people who showed up. Both our kids love books and Evan found a huge book of the human body to look at. Rob helped him get it down and turn the pages and when he saw the page with the brain on it he said, "That's my brain!"

Then he did the next logical thing and positioned his head over the illustration in the book...

The irony of this act was lost on Evan, but not us.

Epilepsy Team at NYU

Yesterday Evan's case was presented to the Epilepsy Team at NYU and, not surprisingly, they recommended surgery. So we have two things on our task list:

1) MEG scan, Sept. 17
2) Meet with neurosurgeon, Dr. Weiner, Oct. 22

After that, if we want to have the surgery at NYU, I guess we could pick a date. Crazy! So it looks like the soonest Evan would have surgery is November. Again, crazy! I guess this is where things start to heat up.

I Want a New Drug

Now that we weaned Evan off the drug that was making him aggressive we are starting a new one. I always hate this process because you just never know what side effects he'll have with the next drug, and they all have a laundry list of horrible possible side effects. Today we introduced Topamax and, on paper, it doesn't look better than any of the others:

In children, the more common side effects are abnormal gait, aggressiveness, behavior problems, confusion, constipation, difficulty concentrating, difficulty with memory, difficulty sleeping, dizziness, drowsiness, fatigue, increased muscle movement, increased saliva, injury, loss of appetite, loss of coordination, nausea, nervousness, nosebleed, pneumonia, rash, speech problems, urinary incontinence, viral infection, and weight loss.

He had his first dose and was pretty out-of-it and sleep today -- par for the course with the beginning of any anti-epileptic drug, so we should know what we're really dealing with in a couple weeks as he gets up to a heftier dose.

(Pre) Low Glycemic Index Diet

We are waiting to hear back from the dietician in Boston with Evan's personalized diet plan before we start him on the low glycemic index diet. This is basically a modification of the Atkins diet: no sugar, no carbs, high fat, high protein.

In the mean time, we have been introducing some of the foods to try to get him used to the dietary changes. Some things will be easy, like giving him a lot of cheese and bacon because he already likes those things. Pre-packaged items are pretty much out and he can't have artificial sweeteners. We have two approved natural sweeteners to use: Stevia and Blue Agave Syrup. Everything will have to be homemade and we are eagerly awaiting a delivery of homemade ketchup, coming soon in the mail from Grandma Mabel! She has made her neighbors do a blind taste test and everyone says her's tastes better than Heinz -- these are high marks, now we'll put it to the test with the true ketchup connoisseurs.

We have tried a few new recipes with mixed success: almond flour pancakes were a no go, but can hopefully be improved upon, fish sticks with an almond batter were delicious and everyone liked them except Evan and tonight we got rave reviews from both kids on a cinnamon bread made with almond flour. Rob and I were impressed with the cinnamon bread too. We are such food people that it is really hard to try convince Evan something tastes good when it really doesn't, and let's face it, you can't make legitimate flour out of nuts! We are continuing to experiment though and are slowly finding things that Evan can eat and actually taste good. It is definitely a challenge.

Don't Bite Strangers!

So I've noticed, in addition to reminding our kids about using good manners and treating people respectfully, there are several things we find ourselves saying now that we are parents: "hold my hand in the parking lot", "don't put that in your mouth" and even the dreaded "because I said so". But there are also a number of sentences I'd never have expected to utter:

"don't clean your feet with your toothbrush"
"don't forget to put your underwear on"
"don't put food in your underwear"
"don't bite your toenails"
"don't wipe your buggers on the wall and then cover them with scotch tape"
"don't sit on your sister's head"

and most recently:
"don't bite strangers"

Don't bite strangers? As if it's ok to bite people you know! Although realistically, I'd rather have my kids bite me than a stranger -- if they insist on biting. This winner of a phrase came out on our way home from Boston. We were at the airport and Evan ran up to a man we had joked with earlier and bit him. He actually BIT the man! So I said what any mother would say, "Evan, don't bite strangers!" Even as the words came out of my mouth it didn't sound quite right. Luckily, Evan only nibbled and the man just laughed about it, calling Evan a little puppy.

This biting incident was the wake up call we needed that Evan was experiencing increased aggression as a side effect to one of the meds he was on. The crazy thing is the way the aggression played out -- this is pure aggression and not anger based. He ran up to the man with a smile on his face and looked like he was going to hug him. We had also seen him hit and throw things but there are so many possible reasons for him to act out, it was hard to make the call. It could have been the disruption to his schedule with traveling, increased seizures, the lack of a nap, etc. When we got home we called his doctor and began weaning him off of one of the drugs and saw a huge improvement in just a week. These drugs are scary things.

Boston...WOW!

We are back from a great trip to Boston and feeling a little overwhelmed with life at the moment. We are fortunate to have family and friends in Boston and had a very nice stay with my Aunt Heidi and Uncle Lorne and got to catch up with my cousin, Robert, as well. We tried to keep the kids sane as best we could, and they loved going up and down all the stairs in the house, playing in the pool and petting the neighbor's dog. We also had lunch with our friend, Kristin after the appointment with Dr. Eskandar on Monday. Another friend, Helene, was visiting her family on Cape Cod and volunteered to entertain Aria on Tuesday while we met with Dr. Thiele -- I can't thank Helene enough for this because we ended up being in Dr. Thiele's office for 4 hours and it would have been really rough with both kids.

As for what we learned, we are still sorting everything out. Both doctors were very impressive which doesn't help to make a decision easier, but it's a nice "problem" to be choosing between two such impressive teams. The neurosurgeon, Dr. Eskandar, was very down-to-earth and talked about the surgery process at Boston which is a little less aggressive than NYU's. Dr. Thiele sat with us for a long time and really impressed us. She is so passionate and knowledgeable about epilepsy and TSC and shares information freely. While we were in the office Evan had about 5 seizures so she got to see first-hand how his seizures develop. She also had us meet with her dietician to start Evan on a Low Glycemic Index Diet (think Atkins or South Beach) which is a little less restrictive than the Ketogenic Diet.

We have to send the dietician a few days of logged food intake and have some baseline blood work done and then we'll start Evan on it. It won't be fun, but with the number of seizures Evan has every day, it shouldn't take long to know if the diet is having any positive effects. Now we just need to figure out how to make sugar-free ketchup, chicken nuggets with almond flour batter and french fries out of cauliflower!

Look out Boston!

Look out Boston, here we come! We fly to Boston tomorrow and will stay with my Aunt & Uncle for a few days while we meet with Dr. Thiele (neurologist) and Dr. Eskandar (neurosurgeon) for additional opinions. This may be the last information gathering appointment for us before we choose a doctor and hospital for surgery. My hope is that after meeting with this team of doctors we will have all the information we need to make our decision. We are leaning strongly toward NYU, but it would not be impossible to sway our way of thinking. We are going to Boston with open minds and are looking forward to meeting with the doctors there.

$5 million in funding for TSC Research?

Early last Sunday morning, the U.S. House of Representatives approved its version of the Department of Defense (DoD) Appropriations Act, which includes $5 million for the Tuberous Sclerosis Complex Research Program (TSCRP) in the Congressionally Directed Medical Research Program.

The Senate has taken no action on its version of the DoD bill, but it is expected to be reviewed in September. Hopefully they will vote to support an appropriation of $5 million for TSC Research in the Senate version of the DoD Appropriations bill, matching the level approved by the House of Representatives.

There are a few hurdles along the way to Presidential approval, but last year the request for funding didn't make it this far so I'll take that as a good sign.

Insurance is a Wonderful Thing!

Having insurance is a wonderful thing, just ask anyone who doesn't have it. We are fortunate to have excellent coverage and feel blessed for that. In the process of learning about Evan's condition & choosing his best options for treatment, we have traveled to multiple states for additional opinions and tests. All the doctors have been in network and we weren't even required to get referrals. Having insurance is a very good thing.

But there is also a downside to dealing with insurance companies and it seems to be the way the overall industry works...they deny a LOT of claims and send bills for things that have already been paid. Trying to resolve these matters requires hours of time on the phone while being transferred from person to person. It is frustrating and exhausting. After all this effort the bills are usually marked as paid because they are for covered procedures, but it is a continuous hassle.

Our most recent issue is with getting a MEG scan for Evan. This test has been identified as necessary to determine exactly where Evan's motor strip and sensory strip are located. The tuber they want to remove is on or near one of them, but there is some question as to exactly where the cortex is located in Evan's case. Basically, the tuber, motor strip and sensory strip all formed at the same time in utero and the formation of the tuber may have caused the two strips to move over a little. The MEG scan will identify where all the brain cortx is located and will then be overlayed on the MRI to give a clear map of the tuber and the cortex involved.

NYU hospital requested pre-approval for a MEG scan from the insurance company. They denied it. NYU sent in an appeal based on medical necessity. They denied the appeal. We can appeal it one more time before we are stuck with the bill, so we are preparing to do that. We're working with NYU Hospital, the insurance company and the HR representative who manages the account and hopefully everything will work out in our favor.

I am optimistic the insurance company will see things our way and realize how important this test is to the success of brain surgery for Evan. Having insurance is a wonderful thing and we are so grateful to have it. Now they just need to compromise and do it MY way!

Going to Boston

Boston is beautiful this time of year, and if you have to visit a doctor in Boston, I think the summer is the best choice for timing.

Having said that, we are off to meet with Dr. Thiele, a neurologist specializing in TSC & epilepsy and Dr. Eskandar, a neurosurgeon at Massachusetts General Hospital. We will be meeting with them on August 13 & 14 just to get additional opinions before we sign on for surgery. We aren't expecting any suprises with these meetings and expect them to recommend surgery, but we want to make sure two hospitals agree before we move completely into this realm.

It's a scary step, but as we move forward it doesn't look like there are other viable options. Evan had over 200 seizures in June and it looks like he'll match or exceed that in July. This is not our choice for an area of over-achievement!

So, there is somewhat of a feeling of desperation sinking in and we have the overwhelming sense that we need to do something. He just can't go on like this and it isn't easy watching him go through it.

My son needs brain surgery

For so long the 5 hardest words for me were: My son needs brain surgery. We skirted the issue and anyone who asked about surgery heard us say we were "considering surgery" or Evan "may be a candidate for surgery." We've seen 10 neurologists and 2 neurosurgeons in the past year and a half, and we've talked about surgery with every one of them, but it always seemed so abstract. We were always projecting out into the future. We'd ask about time frames and they'd say maybe in a year or so. Rob and I would both sigh in relief and leave the doctor's office with a prescription for a new drug and the hope that this one would work. Surgery was still on the back burner.

Well, it's been a year or so, the drugs haven't worked, the seizures have increased and we are now faced with surgery. Not this week and not next month, but sooner rather than later.

Today we spoke with Dr. LaJoie and she told us Evan's blood levels are too high, indicating that the Depakote dosage needs to be reduced to get him back down to a safe level. So, we're reducing the Depakote and adding in a new drug, Zonegran. There is something disheartening about starting yet another drug. We also talked at length about surgery, a concept we are reluctantly embracing.

To begin the process for brain surgery, the epilepsy team at NYU Hospital reviews the case and agrees surgery is the correct recommendation before moving forward. Then things start moving. Today we asked Dr. LaJoie to present Evan's case. For Evan, the team meeting is probably just a technicality, but a process I can respect. This is not something to take lightly and I'm glad that even doctors who deal with this every day still take it seriously.

Funding for TS Alliance Research

A few months ago Rob & I joined a group lobbying on Capitol Hill for additional funding for Tuberous Sclerosis research. The TS Alliance recently asked for additional help in letting our elected officials know the importance of supporting appropriations to the Tuberous Sclerosis Complex Research Program (TSCRP) within the Department of Defense Congressionally Directed Medical Research Program. My mom wrote a heartfelt letter and sent it to all of the representatives in Minnesota. I found it very moving and asked her if I could post it to the blog. Here is what she wrote:

Dear Congressman Oberstar,

Thank you for your support of Tuberous Scerlosis Complex (TSC) that we discussed during your visit to the Finland Recreation Center in March for the St. Urho's Day Celebration.

My grandson, Evan Moss, of Alexandria, VA, was born with this debilitating disorder. Although we are very fortunate that he is mentally high functioning and is not autistic, he has uncontrollable seizures....like 10-20 per day. He is on his sixth medication and it is unlikely that it will control them either. On a recent visit to NYU Hospital, a video EEG recorded over 30 seizures in 2 days......even one is too many. It appears that we are looking toward brain surgery for seizure relief....a scary thought at any age.

Our family and friends have been coping with TSC for almost 4 years and it is emotionally draining for us all and physically draining for my daughter, a Minnesota girl, and her husband. My granddaughter, 5 1/2, not only reports when her brother has a seizure, but also starts counting so that she can also report the length of the seizure.

Since 80% of people with TSC also have autism, perhaps a cure could also unlock some of the mystery of that disease that seems to be affecting our youth in such dramatic numbers.

Please contact your peers in the US House of Representatives Appropriations Committee and ask them to support the $10 million for the Tuberous Sclerosis Complex Research Program (TSCRP). Fully funding the TSCRP is essential to finding a cure for this debilitating disorder. We just need one miracle so that he and many like him can enjoy a healthy life that most of us take for granted.....I don't think one is too much to ask for.

If there is anything that I can do to help you with this cause, please advise.

Saying Good-bye to NYC - for now

We'll, we got the info we came for and it's time to leave NY. After breakfast, Evan and Rob played outside while I cleaned up our room --all the guests at the Ronald McDonald House clean up before they leave to help keep their costs down. This place was amazing and I know that when we come back it will be like visiting friends, some we already know and some we have yet to meet.

Everyone asks, and there is no food from McDonald's in the Ronald McDonald House. They do supply coffee and we found these cups in the kitchen too.

Evan did some serious playing that doubled as great PT -- Flavia would be proud!

Hello!

And with that, we are off to Virginia. We were all really missing Aria and I know she was missing us too, even though she had the grandparents at her beck and call. It'll be good to be home, and then we are off to Florida to spend some time with Rob's family and hit Disney World one day. We all deserve it after this week!

VEEG -- Thursday

Rob and Evan had an NYU Hospital slumber party and when I arrived at the hospital in the morning, Rob had a big smile on his face and told me Evan was being released a day early. Apparently they got around 30 seizures on the Video EEG in two days -- only 17 that we saw -- and they were all coming from the same place. Dr. LaJoie said she didn't think it made any sense to stay longer because all the seizures were so consistent.

So as soon as I arrived at the hospital, we started packing to go back to the Ronald McDonald House of Long Island. When I say packing, this is not an exaggeration. We arrived at the hospital with a suitcase filled mostly with toys and activities. Everything had been spread out, so it took a while to condense it all back into a medium-sized rectangle.

The EEG tech came in and doused Evan's head with acetone to loosen the glue attaching the EEG leads to his scalp and Evan did really well with the whole process. They don't work hard at removing the glue though so Evan was left with a very interesting hairstyle with a lot of crusty glue all over his head.

Before we were released, Dr. LaJoie came back to see us and we got our new medication schedules, lab orders and final words. She asked us if we had any thoughts about doing brain surgery and we asked what they would do if we don't go for surgery. The answer was try different meds (which really haven't shown much success in controlling Evan's seizures). So we asked what sort of time-frame they would recommend for surgery and Dr LaJoie said, "Oh, we're ready when you are. Just give us a little notice when you want to come up." Yowza, that hit like a ton of bricks! So now we have a lot to think about. We still need the MEG scan before we make any moves, so that gives us a little time to sit on all this info.

We left the hospital and made our way back to the Ronald McDonald House. We decided to stay the night and head back home in the morning to make the trip a little easier on all of us.

VEEG -- Wednesday

After a rough night we really had our eyes on the prize – a hard-wired room. Dr. Devinsky came in early and said he was going to push hard for a new room, and that was without us even asking!

His news from Evan's first night of Video EEG observation was that all the seizure activity is coming from one place and he thinks the tuber is on the sensory strip instead of the motor strip. These areas are right next to each other, but if Dr. Devinsky is right, this will be HUGE if we end up looking at surgery. If they remove part of the motor strip, it will leave Evan with a fine motor impairment -- possibly a bum hand, and this part of the brain isn't good at redirecting info. If they remove part of the sensory strip, Evan may not be able to touch his nose with his eyes closed. Neither is optimal but the second option is much more appealing. Dr. Devinsky wants to do a MEG scan next, to more clearly identify exactly where Evan's motor and sensory strips are. They will take his MRI and lay the MEG scan over it to see exactly what's going on.

Our next visit was from Dr. LaJoie who said pretty much the same thing as Dr. Devinsky. She was great and talked with us about adjusting Evan's medications and told us Evan is actually having Simple Partial seizures instead of Complex Partial seizures. I'm not sure it makes much difference in his treatment or case, but it was interesting to learn that.

After Dr. LaJoie left we were moved into the golden hard-wired room. Although the parents in the four-bed room were very nice, we were happy to leave them behind! We moved into a room with another little boy having a VEEG who was a year younger than Evan and the family was super cool. Evan spent the rest of the day plugged into the wall in the playroom for VEEG monitoring. While he was there he made a plant in a horticultural therapy session, played with the train set, attended a birthday party and finished his day off with a rowdy game of Bingo.

Rob spent the night with Evan and I made my way back to Long Island where I was welcomed by all the families we met our first morning there. It was nice to have a warm, inviting place with a comfortable bed to return to!

Big Doctor Day - Tuesday

Evan was thrilled to ride on the Long Island Railroad to get to the hospital. Life doesn't get better than this, a lollypop and a real train!


When we got into Manhattan, we had a big day with two doctor appointments followed by admission to NYU Hospital for the Video EEG. The appointments gave us a chance to meet Dr. Devinsky face-to-face and also meet another neurologist, Dr. LaJoie. The appointments with them were pretty routine with no real surprises in regards to Evan's treatment. Dr. Devinsky has already reviewed Evan's entire medical file and we had spoken on the phone a few times so it felt more like a follow-up visit than an introduction.

Next we walked across the street to be checked into the hospital. They were expecting us and were pretty quick to get us in a room. The downside was that they put us in a room with four beds, but they said they would try to get us moved in the morning. The downside, part 2, was that Evan had to stay on the bed. Ugh! The other rooms are "hard-wired" for the VEEG and the kids can unplug from the wall, walk to the playroom and plug back in there. So, we asked everyone with any authority if they had us in line for a new room on Wednesday. No firm answers but we kept our fingers crossed. Someone needed to have enough seizures to be sent home!

Evan actually did really well with his bed confinement, but we had some technical difficulties and the machine stopped recording. Staying true to Murphy's Law, Evan had a pretty big seizure while the machine was offline and followed it up with a few more. Finally, they got the machine recording again and we looked like we were back in business until the video portion stopped working. But at least the EEG part was recording and that's more crucial. Evan did not disappoint the doctors and kept right on having seizures to give them the data they need.

Evan was awake until almost 11:00 because there was so much noise and activity in the room. In addition to the normal hospital noise, we had three crying babies too: one with colic, one post-surgery and one irritated, as best I can tell. They cried pretty much all night, with no more than 15 min. of silence at a time . Somehow, Evan seemed to sleep through everything and looked so peaceful in the midst of the chaos. So, the first night was a bumpy one, but the up side was that all the families were very nice and kept giving us cookies and treats. You know how the Moss family is, just feed us and we'll be your friends!

Ronald McDonald House of Long Island

Wow, wow, wow!!! This place is really out of this world! We arrived late on Monday night and were greeted at the door with big smiles and a new toy car for Evan. The 4 1/2 hour drive took about 7 1/2 hours, but we felt so welcomed when we finally arrived. The saving grace for the trip was the portable DVD player for Evan--he was thrilled to watch Thomas the Tank Engine DVDs over and over and over again. Evan said it was just like movie night. Aria stayed at home with Grandma Mabel and Grandpa Jim and is prepared for her every whim to be answered with an enthusiastic "yes". Aren't grandparents great--we won't be surprised if she asks us to leave again when we get home!

As I said, the Ronald McDonald house is really amazing. We walked in the lobby designed to look like a Victorian village and got a quick tour of the place. There are multiple open kitchens lining a huge community dining area and each room has fridge and pantry as well as access to an ample amount of supplies for anyone in the house to use. This place is all about the kids and there are play areas everywhere in addition to a great playground outside, nestled in the gardens. Every morning a bakery donates bagels, breads and muffins and almost every evening dinner is prepared by a different organization. Any leftovers are warmed up for lunch. So, if you are near the house you really don't have to worry much about food, there is always something to eat.

Feeling thoroughly overwhelmed, we made it up to our room which is large (especially by NY standards) and has two Sleep Number beds topped with handmade quilts. On the dresser were more gifts for Evan: a fleece pillow and a couple bears. He brought the pillow and one of the bears to the hospital with him.

All I can say is, what a wonderful place. It takes such a burden off families to have such a warm, inviting and affordable place to stay while a child is in the hospital. We are so grateful to be staying here and feel very lucky.

Here are some photos of the Ronald McDonald House of Long Island:
I think this place really was built with love. This quilt was hanging and was made and donated by the Long Island Quilt Association. Each room also has quilt on the beds made the the same group.

This is the quaint lobby area.

Here is a small portion of the dining area.

There are 12 (or so) kitchens like this one for guests to use.

Evan loved the train in this area donated by the NY Jets!

This was our bedroom, where eveyone slept soundly.