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.

NYU Hospital

So our big medical news is that we are going up to NYU Hospital next week. We'll be meeting with Dr. Devinsky and checking Evan into the hospital for a 4-day video EEG. We will be arriving with a suitcase full of toys and activities with the hope of keeping Evan entertained. The last time we did one of these, Evan couldn't leave the room and that's what we're expecting again.

My parents are going to stay at home with Aria while we're in NY, so she should be adequately spoiled while we're away. Rob and I will take turns sleeping at the hospital and we have a room at the Ronald McDonald House of Long Island. You can only stay there if you have a child at the hospital and it looks pretty amazing. Surprisingly, the rooms are only $25 a night!

We're planning to take the train to the hospital and Evan will love that. We'll be updating the blog while we're in the city and will try to keep everyone informed as best we can through the blog.