September 06, 2015

Good to be home!

To say it is good to be home is such an understatement. We are not exactly back to our typical routine but it is incredible to sleep in our own bed with no beeping or sounds of other children waking in the night. The entire experience has been pretty surreal and since we have been home I have awoken several times not knowing where I was right away.

In our few days at home we have seen several of Evan's friends, taken Evan to a local Physiatrist (doc who manages his therapy) and been to Evan's school twice. We are in the process of finalizing a plan for Evan's return to school and at the advice of the physiatrist, Evan will receive homebound instruction for the first month of school. The principal said Evan can still come to lunch for some peer-to-peer interaction which will be great.

Evan is progressing really well and walking better every day. We don't worry as much about him falling but he tires more quickly than he did before surgery. Evan never complains about being tired but we can see it in his face. Today after running errands and walking a lot he told us he was lightheaded and rested for 15 min. and said he was feeling much better. These small comments from Evan are our indications to slow things down for him. His brain still needs time to heal.

August 28, 2015


It's official! We are busting loose from inpatient therapy! Evan has progressed rapidly and will still need PT and OT multiple times a week but he is well enough and safe enough to be discharged! Evan was happy to pull of the "FALL RISK" bracelet!

We will be in NYC until Monday. Evan has a follow up appointment with Dr. Weiner Monday morning and we will head home after that.

We are looking forward to a weekend off in the city with Evan. Aria is at home with Aunt Mary because she had a class she wanted to take. They have big plans to go sailing which sounds incredible!

August 21, 2015

Venturing Outside

Evan is doing so well with his therapy and we are so proud of him. He receives three hours of therapy daily and every day he rises to the occasion. He works hard and is exhausted. 

On Friday he got to go outside during physical therapy and the goal was to go to Dunkin' Donuts! 


He walked a total of about four blocks and stopped several times along the way to rest. We are now officially cleared to take Evan outside over the weekend. What a luxury that sounds like after being cooped up for so long!

Aunt Mary and Aria were her for the weekend and Evan was so happy to see them both. We went out to eat in Saturday and ventured further today with a leaner wheelchair.

The highlight of our outing was s game of chess in Union Square Park. And yes, he won!

Although we miss home, I it was a great weekend! We have much to be thankful for.

August 20, 2015

Cautiously Optimistic

We had a bit of a rough day yesterday. At 2:30 am, Evan had a seizure which pretty much rocked our world. We spoke with Evan's medical team and increased his meds to make sure he has good seizure coverage. Dr. Weiner was surprised he had a seizure said it could be a one-time thing as his brain heals from surgery. We are all hoping it was an anomaly and not a trend!

In spite of the seizure, when Evan woke up was ready for his first full day of therapy. Three hours of hard work really wore him out and he napped after each session. Today he showed improvement already and his energy level was also higher but he did welcome a long nap in the afternoon.

Yesterday Evan also had fun with a sunglasses craft project. 

Mindy is always such a good sport!

August 19, 2015

Party Bus to Inpatient Rehab

Yesterday Evan was transferred by ambulance from the hospital to rehab. We all rode over in the ambulance. It's a much better experience to ride in an ambulance when it's not an emergency situation.

Evan pointed out the pretzel cart on the corner in the way in...

We met a bunch of nurses and therapists as we got Evan settled in. This is what happens when a therapist asks for your PT goal and you don't really answer so your mom does...

August 18, 2015

Hospital Insanity!

Evan is doing really well and improving everyday.

Yesterday was insane all day long at the hospital. We are learning that Mondays are one of the busiest days for patients! Our steady stream of visits from Evan's medical team began at 7:20 am and we met with everyone: neurosurgery, neurology, physical therapy, occupational therapy, speech therapy, physiatry, social  workers, nurses, child life specialists, music therapists, etc.

The big discussion yesterday was regarding inpatient therapy. The recommendation has been for 10-14 days of inpatient PT and OT. We explored our options, including trying to have this therapy done in DC but that didn't work out so Evan will having his inpatient therapy in NY. He has made great progress already and we are eager to watch him blow us all away!

August 16, 2015

Lighter Bandages!

Evan is so happy to have his bandages lightened up. They removed The drain and changed the dressings this morning. He kept commenting on how much better he felt and thanked every nurse that walked into his room for removing that drain.

Tomorrow we should have a better sense of inpatient versus outpatient therapy needs.

August 15, 2015

Evan is Walking!

Evan is doing really well. We walked a bit today and he needs some support for balance and tires quickly. He can move all his fingers on his left hand but has some weakness and delay in response.We think it will all come back with PT and OT, Evan will be evaluated on mindset to assess his therapy needs.

We had lots of visitors today. Evan had a great time with Marcus and Josh today!

And I was blessed with baby time!byhere is something so relaxing about holding a baby.

One Day Post Surgery

Evan had a great day today. He's only one day post surgery and looking great! We had a busy day with all the docs checking in on him, a MRI, removing 2 IVs and being moved from PICU to the main floor. These are all great signs of progress. We are still waiting to hear recommendations regarding therapy. We don't know if he needs inpatient or outpatient therapy but we should know more on Monday.

Evan was so happy to have a visit from Marcus and Josh today.

Becky was a great Blackjack dealer and Evan's was the big winner...again...I've never seen someone so lucky at cards as Evan!

At this point our goals are to kept Evan's spirits up and to embrace hope.

August 13, 2015

Update!!! Good news!

Surgery went really well! The motor strip was not impacted and Evan was awake and feeling well. We saw him wiggle his toes and fingers and will know more when PT looks at him. Dr. Weiner said, "This is the surgery he needed. I can't see how this won't help him." We are thrilled beyond belief!

Surgery has begun

Evan went into surgery this morning and now we begin the wait again.

Evan tries to catch some zzz's after Dr. Weiner signed his head to mark which side they will operate on.

The anesthesiologist (in the red had) dubbed herself Evan's dream girl! A few minutes after this photo was taken Evan told her he likes it when he feels like he's flying! 

Surgery Day

I'd say Evan is having surgery tomorrow but I realized it's already tomorrow!

It was a long day!

Evan had brain mapping today which is a crazy process. They hook him up to a machine and stimulate the EEG electrodes that are directly on his brain. The goal is to identify the areas of his brain that control motor function to help Dr. Weiner ID what is safe to remove.

When they did the mapping, the motor area revealed a pretty small area to remove without causing a deficit. Because of this Evan will only have one more surgery. 

Dr. Weiner said its a complicated surgery and called it "black belt neurosurgery" but feels confident about it. Evan has an early OR time and I will update when we have info.

August 10, 2015

Evan had a seizure!

Last night Evan had a seizure. We were really relieved because we have heard of people having the first surgery for invasive monitoring and then not having a seizure. When that happens, I've heard they don't continue with the surgery. At least we don't have to worry about that! The docs would like to see a couple more seizures but if that doesn't work out at least they were able to get some good data last night.

Today we had a flurry of activity and a room change. Evan's EEG is very clean between seizures with some occasional spikes.

Evan humored me by waving to the camera for his close up! He seems tired this afternoon and isn't eating much. Luckily we have a basket full of snacks from his friends and family so we are able to get him to nibble throughout the day!

August 09, 2015


So it sounds like Evan's EEG is pretty quiet with no seizures. After the third surgery this is what we want to hear but for now we really need him to have a seizure so the docs can confirm where the seizures are starting and what tissue to remove.

Today was pretty quiet with the exception of having to get another MRI. They were concerned about the way the fluid was draining and wanted to make sure he didn't have a brain bleed. Everything checked out just fine so we are continuing to wait for a seizure. When concerns like that come up it makes you think about how serious this surgery is. We know so many people who have done this and it's Evan's second time but there is nothing routine about this procedure.

Aria and Evan have been watching a lot of movies and Dr. Who and It's so incredible seeing them together. Just before I took this photo Evan looked so sad. Then Aria walked into the room and he was all smiles! What a special bond they have!

August 08, 2015

What would you do?

Tonight Evan was feeling like his old self and was feeling philosophic. He asked the same question to multiple nurses:

"If you woke up one morning and could push a button and make TSC and epilepsy go away but you would lose all memories and experiences you had that were connected to TSC and epilepsy, would you still push the button?"

Evan's answer was the most I nteresting. He said he would not push the button because he has had so many good experiences and met so many great people because of TSC. 

August 07, 2015

Hospital Field Trips

Today Evan got a PICC line (peripherally inserted central catheter) which is basically a fancy IV that can be left in for longer periods of time and can be used for both blood draws and medication delivery. It goes from a vein in his upper arm to his heart and is done with sedation using ultrasound to guide them.

He couldn't eat until after the PICC line was in place so he spent a few hours being hungry as he waited for his turn. Luckily they were able to get it done in the morning! 

Evan also had an MRI to make sure Dr. Weiner has the EEG grids and strips exactly where he wants them. Everything looked perfect!

We had a visit from Liza today and Evan was so happy to see her. He was still a little loopy and I think he thanked her 5 times for coming to see him. 

The challenge of the day was bouts of nausea off and on. He hasn't eaten much but he's making progress. 

We are looking forward to tomorrow and are hoping for a quieter day since it's the weekend and a calmer stomach.

August 06, 2015

Feeling Hopeful

Today was a long day filled with lots of waiting. Dr. Weiner was really pleased with how the surgery went. There will be two more surgeries to complete the process and it is reassuring that today went so well.

Today Dr. Weiner performed a craniotomy to expose Evan's brain and put EEG grids and strips directly on the surface of his brain. This will give a better idea about exactly where the seizure activity is coming from. There was an additional complication today because Evan had a similar surgery 8 years ago and Dr. Weiner was going into a prior surgical site. Apparently Evan healed beautifully from the first surgery and it was better than could have been expected. Dr. Weiner was able to insert everything he wanted without having to make compromises due to complications and was beaming when we told us about how the surgery went.

Evan was brought up to the PICU and we found out there was a fire somewhere in the hospital. The lobby was evacuated and the OR was closed due to power concerns but it was controlled efficiently and we did not have to be evacuated. That would have been crazy.

Ever since surgery Evan has been feeling nauseated as has been getting some help with IV anti-nausea meds but it has been a little tough for him. Hopefully tomorrow will be better on that end. 

Great results overall for today and we are really pleased about the potential for the docs to get really good information due to the success of this surgery.


Dr. Weiner just came out and spoke with us and he said everything went well, better than expected even! Smooth surgery and he was able to do things exactly the way he wanted. Dr. Weiner was beaming. Now we are waiting for Evan to come up to his room.

Evan is in Surgery

We brought Evan to NYU this morning for surgery. There is something surreal about walking down the street to go to the hospital for brain surgery!

It's always great to see Dr. Weiner!

Evan has such a great perspective and has learned to advocate for himself.

I went into the OR with him and stayed until he was sedated. My outfit was less than flattering and could have benefited greatly with a belt.

Now we wait. The surgery will take 3-6 hours.

August 05, 2015

Getting Sugary for Surgery

We arrived in NYC this afternoon and after getting settled we went out for dinner and cupcakes. I don't know what other people do to prepare for brain surgery but a decadent chocolate cupcake felt right to us.

My mom is flying in tonight and we will all show up at the hospital at 8:30 tomorrow morning. We will meet with a nurse, the anesthesiologist and the surgical team before heading to the OR. We aren't sure exactly what time Evan will have surgery but our guess is they will begin around 11:00 or 12:00.

Tonight at dinner Evan remarked, "Next month I won't be having seizures any more!" When preparing for surgery, that attitude is even better than a chocolate cupcake.

August 04, 2015

14-Minute Seizure

Tomorrow we go to NYC and Evan's first surgery is on Thursday. This morning Evan had a 14-minute seizure which is almost twice as long as a typical seizure for him. We gave him two doses of his rescue med and called 911. It's been a while since we had to call them and Evan's seizure was over just before they arrived so we didn't transport him. Now he's sleeping peacefully as if nothing ever happened.

My plan is that this was an important visit from EMS marking the last time they will visit us here. They invited Evan to come to the station for hot dogs after surgery which sounds like a much nicer way to see them!

August 03, 2015

Cut on the dotted line...

Evan has always had a great sense of humor and positive attitude. It's hard not to smile at his approach to life. He decided he wanted to have an arrow carved into his hair, pointing toward his incision from the first surgery. Dr. Weiner said he would use the same scar as a point of entry for this week's surgery so Evan thought he'd help out with directions

Yesterday we took him to an incredible barber shop, Artcutech, and Kyle took his time to create what Evan requested. It was fascinating to watch him work. He commented on how good Evan's scar looks and talked about it as a design element. In seven years since Evan's surgery, it was the first time I ever saw anyone embrace Evan's scar with so much positivity, including myself.

I think we are ready now:

July 28, 2015

Whirlwind of Appointments

We successfully maneuvered our way through 5 appointments in NYC in two days. And we are all exhausted!

Yesterday we met with Dr. LaJoie who is back at NYU! We followed her to Long Island and she moved back to NYU just in time for Evan's surgery. The stars are alignment for Evan! The best possible news is that she will be on hospital rotation in August so Evan will be managed by Dr. LaJoie and Dr. Devinsky throughout the surgical process from the neurology side of things.

We stayed at the Ronald McDonald House which is always a beacon for weary hospital travelers. We had a warm welcome from both new and familiar faces and we were so grateful for a catered Mexican feast donated to the families staying there. After dinner "The Bubble Man" was in the house for entertainment. I never realized how relaxing it is to play with bubbles. You have to move slowly and breathe evenly -- I think it was tai chi in disguise!

Today we checked out early to begin our marathon of appointments. Cardiology is a stopping point for all surgery patients and that went smoothly. Evan's heart is perfect so no worries there! One of Evan's PICU nurses from his first surgery in 2007 is in this office so we had a mini reunion!

Hematology was a rough stop. Evan has a considerable amount of anxiety relating to having a needle even "look" at his arm. We had a full room with two nurses and a child life specialist patiently focused on helping us turn Evan around. It took a lot of coaxing, discussion, negotiation, bribery and distraction to get to a point where he willingly gave up his arm. At that point he sat there as still as can be while the nurse got the vein on the first try and filled about 8 different viles. After that ordeal we were all spent and hugged goodbye like we were long lost friends.

Next stop was pre-surgical and It was a pretty smooth visit. It was a long appointment to go over medical history and meet separately with a nurse and anesthesiologist.

We finished the trip with a visit with Dr. Golden Hands himself, AKA Dr. Weiner. It is always a pleasure to see him and he has a quiet way of whisking away any nervousness as he talks through the process and answers everyone's questions. Evan was completely engaged and had several questions about the surgery and recovery. It was fascinating to see him take an active roll in the discussion and Dr. Weiner commented that Evan is a young man now and shared how much he enjoyed talking with him. He met Evan when he was 3 years old and has been a central part of his journey.

Now we are on our way home with our bellies full of New York pizza and only a few more days before we return. I am at confident about our decision and know Evan will have a positive outcome. I feel nothing but optimism about our next steps.

July 23, 2015

Ten days and counting

I woke up this morning with the surreal realization that Evan will have surgery ten days from today. It has been scheduled for a couple months, and in my mind it has always been so far away. Today we went to NYC for pre-surgical visits and Evan will have 5 appointments in the next 2 days. 

The scheduling aspect of this surgery is pretty chaotic but we have a place to stay and are lucky enough to have family who will join us in NYC and stay with Aria at home so she can take a class she's interested in.

Going through this process a second time is a really different feeling. The logistics are easier but it was harder to get in the right head space. What I know about this experience is that it will challenge us in ways we never expect and as prepared as we think we are, there will be surprises. We will have experiences ranging from inspiring to unbearable and will not be able to plan how each day will go. Surgery days are the hardest and are filled with anticipation and lots of just waiting around.

Understandably, Evan is nervous and we do our best to ease his concerns with honest and optimistic answers. We have had a lot of challenging conversations lately!

Sometimes people say they don't know how we do it and I usually make a joke about being addicted to coffee. If I really think about it I can honestly say I don't know how we do it either. As a parent dealing with a child's chronic medical condition you cherish what goes well and no matter how hard things are on us, the hand Evan has been dealt is so much harder. He has a string spirit and always manages to rise above his own circumstances. Evan bounds through life with a confident smile and is always ready with a joke. His laugh is infectious and he has a way of drawing people in. We look to Evan for strength and guidance and if we are wise we follow his lead.

July 12, 2015

Seizures in the North Woods

Rob and the kids are in northern Minnesota at my parent's house and I will be there for a long weekend next week. 

This beautiful part of the country with idyllic lakes, mild temperatures, gorgeous vistas and the nicest people you'll ever meet is a terrifying place to be when Evan has a seizure because they are so far from a hospital. The nearest hospital is 30 miles away and the nearest hospital with a pediatric epileptologist is 60 miles away.

To make things interesting Evan has had three seizures in the last 24 hours, much more frequent than his norm. He has also had emergency medication for each seizure. We start to be concerned about possible respiratory failure when giving him so much emergency medication in such a short time span. I emailed his neurologist and she called Rob almost immediately. We have increased Evan's normal medications and if he has another seizure he will probably have to be transported by ambulance to the hospital.

It's hard not to be there with all this going on. I know Rob is perfectly capable of handling this but it's just not the way I like to do things. 

June 27, 2015

fMRI Success!

Yesterday Rob and Evan spent most of the day traveling back and forth between Virginia and New York for a second try at getting an fMRI. It was hard not to be there but I'm so proud of Evan for being such a trooper.

Evan came through with flying doors and did a great job not only with getting the IV but also the long MRI process.

He was heavily rewarded with Pokemon cards, ice cream, pizza and frozen lemonade. All well deserved in my book! This stuff isn't easy for most adults and Evan is a true champ!

June 22, 2015

Finding Peace with Frustration

Yesterday we spent Father's Day in NYC and had a fantastic time as a family. We strolled through the city, saw Blue Man Group and had dinner at Mandoo Bar, our favorite restaurant in Koreatown.

Today Evan was scheduled to have a Functional MRI (fMRI) before we left the city. This is basically a specialized MRI used to map brain activity. It requires an IV to inject contrast during the scan so we showed up early to get the IV. Evan has difficult veins and a decent amount of phobia of needles -- a direct result of bad IV experiences.

We arrived at the appointment hoping for the best. Evan always says he prefers to have the IV in his hand vs. arm and this is where things always start to take a turn for the worst. Today was no exception. After some effort to cajole Evan into letting the nurses look at his arms, he points to the tiny veins on his left hand and tells them he wants the IV there. It's a long process to get him to let them pick up a needle, including tears and hyperventilating. Finally, I get him to take a deep breath and focus on me and the newly opened Pokemon cards that I slowly reveal as the nurses work. On the second card I know there is a problem. Evan's focus is strong and he doesn't flinch. It looks like they are fishing for the vein. Evan holds steady, his gaze contradicting what I see when I glance at his hand. Three more cards and the nurse pulls everything away from his hand and holds gauze over the small mark. She blew the vein. I show Evan the rest of the cards and he looks at his hand and then at me, in horror.

We both know this means they need to try again and I feel like I have somehow let him down. Over the course of the next two hours we try to gear up for another attempt. Evan is resistant. We try everything to calm him and encourage him to let a new nurse try a bigger vein in his arm. He cries, hyperventilates...we explain the importance and try to encourage him to let them try once more... The nurses give him breaks...this goes on and on and on. His appointment slot passes but they say we can still do the fMRI if he gets the IV. More tears, hyperventilating and failed attempts to convince Evan to let them try one more time. In the end he refuses the IV.

We leave the office and we are all exhausted, frustrated and deflated. It's a mixed bag. We are frustrated with the nurse for messing up, with Evan for not trying again and with the knowledge that we have to come back to New York in a few days to try again. 

We are on our way home now and the frustration has passed. No sense dwelling on what we can't change. We will be back in New York on Friday for another fMRI appointment and we will arrive hopeful that Evan will have a better experience.

June 21, 2015


Yesterday Evan was super helpful and cleaned the bathroom! This is an optional chore and I have told the kids I will pay $5 per bathroom any time they want to make a little extra cash and Evan took me up in the offer. He was excited to raise the last of the money to get a new Skylander figure because apparently we don't have enough already! 

He did a great job and then a half hour later complained of a headache, then nausea. We started going down the he sick, is it a reaction to his meds, is it the chemicals in Soft Scrub, is it something else?

The headache got worse,vomiting began and sleep followed. Migraine, I thought. Pretty classic symptoms followed by some head sensitivity afterward. I may not be a doctor but I am a seasoned, although only occasional, migraine sufferer. A quick google search revealed bleach is a common trigger for migraines so I'm guessing that's our culprit.

We will bring it up with his neurologist  but I can't help wondering how many more things are going to be thrown at this kid! He was feeling great in the afternoon and in true Evan style, you would never know he had been down for the count just hours earlier. Evan also had a seizure early this morning.I hope this is a one time thing and not a new trend. I say "no" to the migraine / seizure package deal, thank you very much! Enough is enough!

Now I will happily join the yuppie ranks and start looking for organic, no odor cleaning supplies than work half as well and cost twice as much!  

June 05, 2015

Step Forward to Cure TSC: National Walk

The past year has brought more medical testing in addition to cause for hope for our family.

As Evan's seizures have increased, we have seen him struggle with additional challenges regarding memory which has also caused some educational difficulties. We knew it was time to step up his medical treatment and he spent 6 days at NYU Hospital to be evaluated for another brain surgery. The surgical process is a series of 3 surgeries requiring Evan to spend most of August in the ICU. This is not a decision we have taken lightly and Evan has led the way, telling us that any risk is worth stopping his seizures. He has tentatively been scheduled for surgery on Aug. 6.

In addition to this news, his recent MRIs revealed a small tumor on his liver and several tumors spread across both kidneys. The largest kidney tumor is 3.2 cm. and although we have spent many years watching it slowly grow, the time has come to take action. We are fortunate that in 2012 the FDA approved a medication that can actually shrink this type of tumor, literally changing the course of treatment for Evan! There are side effects, including a weakened immune system so we will wait until he recovers from surgery to start this medication.

Although this sounds like an overwhelming medical scenario to deal with, we are filled with optimism for the success of this surgery and the likely outcome of shrinking Evan's kidney tumors. On days that are tough, I only need to look at Evan for strength. He is always positive and ready with a joke and a smile and his laugh is infectious. He still participates in advanced curriculum coursework in math and language arts and is well-liked by his classmates and teachers. He has truly come a long way and our hopes for his future continue to be bright.

We are currently looking forward to joining the walkers that will come together on the Mall in Washington, D.C. to raise awareness and funds for the Tuberous Sclerosis Alliance (TS Alliance). So much of what we are thankful for is due to advances in medical research funded by this organization, so to say they are near to our heart is an understatement. I have also been working for the TS Alliance for about 3 years and I feel so fortunate to know that everything I do makes a difference for Evan and so many people living with TSC.

We will be walking as the Seizure Tracker team again this year and hope you will consider supporting our team in honor of Evan. Check out our individual pages by linking from the main page...

Team Seizure Tracker walks for TSC!

Thank you for being part of Evan's team!

Lisa, Rob, Aria and Evan

May 09, 2015


There is not much that feels better than being released from the hospital after a week of living there! Eauwr this week I said all I wanted for Mother's Day was to be out if the hospital and I got my wish!

This is what freedom looks like:

Last night Evan talked about some of his concerns about having brain surgery. We told him we wouldn't make this decision without him and that his opinion is very important. Nervously, I asked him if he wanted to have brain surgery and he said, "I'll take any risk to cure myself." 

He also talked about missing Aria:

Evan: dad, if I tell you something will you promise not to tell Sria?

Rob: (hesitantly) ok...

Evan: I really miss Aria. I wish she was here.

I wouldn't have posted this except that when he spoke to Aria on the phone this morning, the first thing he did was tell her how much he missed her. The boy cannot keep a secret-- not even his own!

We are on our way home now and will be back in time for dinner! It will be great to see Aria and Grandpa Jim!

May 08, 2015

2015 VEEG - Day 5

Today was a calmer day. Since Evan had a seizure last night there was no pressure or stress about getting the necessary information for a surgical evaluation. Also, because he had a seizure at 10:30 last night nobody had to stay up until 4am!

Evan didn't have another seizure but they decided to still do the SPECT scan. The radioisotope was injected at 3:00 pm and he had the scan at 5:00 pm. It was impressive to watch him lay perfectly still for 30 minutes without sedation. I know a lot of adults who would have trouble with this. The machine zoomed in close to him and rotated.

At this point, we started him on his meds again and hopefully will get discharged tomorrow morning. There is a bit of wild card though because if he has a seizure tonight they will probably keep us another day. We are hoping he doesn't have a seizure tonight but because he hasn't had any medication in a few days we don't know exactly how things will go as he ramps back up.

Fingers crossed for no seizures tonight!

May 07, 2015

2014 VEEG - Day 4

We managed to keep Evan up late again but we also had a new challenge: a stomach virus for Rob and Evan. They were both sick all night and into the day. Evan was given an IV medication for the nausea and Rob went to the ER for fluids and nausea medication. I spent a good portion of last night and today sanitizing and re-sanitizing -- our room now has the reassuring scent of bleach. The nurses gave me my own container of super strength bleach wipes and I am considering it an early Mother's Day gift!

Rob and Evan are both doing much better but we have all been quarantined, at least for today. Whenever people come into our room they suit up in a blue plastic gown we have been referring to as hazmat gear. Hopefully that restriction will be lifted tomorrow.

As for seizure activity, we had a busy day. He had a simple partial seizure at 7:15 this morning but it didn't evolve into his more typical complex partial status seizure. Then he had his typical seizure this evening. He fell asleep doing his homework and had a seizure shortly after that. We will have more info tomorrow morning.

We have also made huge progress on Evan's needle phobia. The nurses have been great and Evan keeps a keen eye on his IV port and was asking frequently if it needed to be flushed. They taught him how to do it and now he flushes his own UV when they come in! 

There is a special place in heaven for pediatric nurses!

May 06, 2015

2015 VEEG - Day 3

It's amazing how the days start to blend together while staying at the hospital. Evan is in good spirits and has had a lot of fun activities to keep him busy and has enjoyed playing video games in the playroom with some boys his age.

It looks like we effectively switched Evan's days and nights. He was up until almost 4:00 am and slept until 11:00 am this morning but did not have a seizure. We spent a good portion of the day with a nurse stationed just outside our room and an ominous metal box containing a radioactive isotope sitting near Evan's bed. 

Our nurse was ready to jump into action if Evan had a seizure and would have injected the isotope into Evan's IV and scheduled imaging.

Without a seizure, all drama was postponed while we continue to chase Evan's elusive seizures.

At this point we have taken him off all medication and he will stay up until 4:00 am again. We will see what tonight brings.

May 05, 2015

2015 VEEG - Day 2

Today was a busy day! Evan played video games, watched a movie, created an art project, made smoothies, met a magician and had a music therapy jam session!

We had to try again to get an IV and this time they brought in a nurse who has the reputation of always getting the vein. He was amazing: gentle, soft spoken, calm, confident and precise with a needle! Evan was quite nervous but had no need to be and we were all relieved to see the IV functioning perfectly.

Evan hasn't had any seizure activity yet so we will reduce his medication tonight to see if it will push him into having one. We spend so much time trying to prevent seizures that it is hard, even after years of doing this type of testing, to fully embrace the idea of wishing for a seizure. But we don't get to leave until he has one so, seize baby seize!

They also want to do is a SPECT scan. This requires an injection of a radioisotope as soon as Evan has a seizure followed by 3D imaging to determine the specific areas of the brain impacted by his seizures. The challenge is that Evan's seizures typically happen in his sleep and they have to have a nurse sitting next to him ready to insert the radioisotope and at NYU this has to be done between 9am and 3pm. So, they will try to switch Evan's days and nights to get this test. They want us to keep him up until 4am it too! Yikes!!

May 04, 2015

2015 VEEG - Day 1

The first day of a video EEG always has its ups and downs.

We were up early to travel to NY and met with Dr. Devinsky before checking into the hospital. Evan did a great job getting the EEG hooked up. This used to be so hard but he's growing up and some things are easier now.

We had a visit from a therapy dog that everyone enjoyed, especially Mindy!

Things turned a little for the worse when it was time to put an IV in. Evan has a lot of anxiety about needles and the nurse blew the vein when she tried to insert the IV. Evan was doing so well up to that point and then made it pretty clear that he didn't want them to try again. We ending up refusing the IV at least for tonight. We will revisit the conversation tomorrow.