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: