Epilepsy Today

Today Ellen and I got up early and headed to the hospital.  She had her neuropsych evaluation from 9-12 and then we checked in to the hospital at 1pm.  

I was present for the first 10 minutes or so of the neuropsych and then one of the doctors and I went to his office to chat for a bit about Ellen’s stuff and professional stuff (I needed a referral for a colleague’s client).  Then I waited.  I kind of wanted to be in there to support Ellen, especially since I know that when she gets tired and isn’t trying she sometimes needs help focusing.  A good example of this is her last hearing test, which she failed three times.  It was a 5pm appointment, and she was fried.  She was just ready to go home and having a tough time concentrating.  John finally took her aside and said, “Honey, I know you’re tired, but if you don’t pay attention and really focus on this, we are going to have to keep coming back again and again until you pass.”  She passed the next test.

Then again, I also didn’t want her to rely on me to focus her.  Much as I wish I could, I will not be standing next to her for the next 12 years as she learns things.  She is going to have to figure out how to learn and focus on her own.  I did give her a huge cup of orange mango juice to go in with, so hopefully that kept her peppy.  She seemed pretty happy when she came out to greet me in the waiting room.  

In great news, we had two amazing interactions today that showed me that she is definitely making progress.  First, she and I had breakfast in the atrium of the hospital before going up for neuropsych.  There was a lost balloon floating up near the ceiling and Ellen pointed it out.  I asked, “What does that balloon say on it?” and she answered, after a very short pause, “Happy Birthday!”  (which was right!)  She is definitely starting to recognize some sight words and put things together.

After we went out to lunch, I brought her to the gift shop so we could browse since we had a bit of time to kill before our admission.  She originally chose a bracelet that she wanted and then went looking for something for Harry.  I didn’t want to spend a ton of money, so I repeatedly asked her to tell me how much things cost.  And…she did.  She was able (for anything less than $10) to say, “Oh, this is $4.89” or “This is only $9.99, Mom!”  Eventually, she chose a present for herself (a Jeannette doll from Alvin and the Chipmunks) and a present for Harry (a small Scooby Doo doll.)  They were both ONLY $7.99!  What a steal.

Her admission seems to be going ok.  She isn’t frightened by it anymore, which is good.  She does seem to get more bored than she used to (just cycling through activities very quickly and easily restless) but hopefully this admission won’t be longer than 30 hours or so.  And hopefully we’ll figure out whether we should keep her on this medication or not.

In sad news, Harry broke down as I buckled him in to his car seat tonight.  He was at school all day and came out with John for dinner.  We had a taco & ice cream sundae party and FaceTimed with Eli and Gabbie and then John stayed and I brought Harry home.  He started sobbing as we pulled away, “I want Ellen and Daddy to come home with us.  I SO SAD, Mama.  I SO SAD.”  We talked about how great it is that we can spend a night away and then still see each other again, and how nice it is that he and I were going home to see the doggies, and how much Ellen had thought about him all day (she really did.  In the neurology office she carefully chose a piece of candy for herself and then asked if she could choose one for Harry.  At the admission desk, she carefully selected a sticker for herself and then asked if she could select one for Harry.) and how much love she had put into Scooby Doo.  After our discussion, Harry perked up a little and then asked to call them, where he gave a heroic 2.5 year old interpretation of his feelings “I was just sad for you and then I had my Scooby Doo and then there was a surfboard and I was sad for it and I missed you and wanted to eat my taco.”  (Something like that.)  He is currently sleeping in Ellen’s bed, Scooby Doo next to him on the pillow, all cuddled up with his new friends.

Exciting stuff

So, I know it’s been a long time. We have had a lot going on. I started an internship 16 hours a week on top of my full time job in September. The kids went back to school full time (I used to be home with them on Mondays) and Ellen went to Kindergarten. I made a commitment to continue running 3 times a week even when my schedule is crazy and so I am up at the crack of dawn those three days to fit in my run. We are all still getting used to the new schedule.

Ellen started Kindergarten and she loves it, but it’s a big change.

The days are very long for her and she has been having trouble in the afternoons (just getting very quiet and sleepy-seeming, having a tough time paying attention), so she is now taking a 20 minute rest in the nurse’s office after lunch each day. So far, it seems to be helping.

The new medication is doing a very good job at controlling Ellen’s seizures. She has dropped two of her other medications and is down now to only two. She has LTM this week Weds/Thurs to see if her spikes are more controlled on the EEG. It’s tough because the new medication also seems to have some side effects. Ellen’s processing speed is slowed way down and her short term memory seems to be suffering, which could be a sign of encephalopathy or could be within the range of normal. Ellen has neuropsychological testing over the next few weeks to try to figure it out.

Ellen’s appetite is also way down. She has lost some weight and it’s hard to tell if the old medications were artificially inflating her appetite or the new ones are suppressing it, or if she’s just becoming more picky developmentally, or if she is less hungry because she is doing less physical activity (she went from having 2-3 hours outside or in the gym each day to 15 minutes of recess a day and one gym period a week), or if we’re on the downswing of a growth spurt (she grew 2 inches between August and September, so maybe she’s just not hungry because she’s not growing a ton right now), or what.

Harry continues to be a maniac. Recently I told a friend that this photo captures the essence of Harry.

He finds joy in every day and meets new challenges with energy and enthusiasm. He also loves to dance.

This weekend we did a 5k for the Michael Lisnow Respite Center. Grammy even came and did it with us!

This is the first 5k that Ellen has ever run or walked the whole time! We brought a stroller just in case and she started in it for the first minute or so until the runners cleared out and then away she went! Although we kept offering her the stroller in case she got tired, she kept saying, “Nope! I’m good!” She was determined to do the whole thing and it was totally something she wanted to prove to herself. I was just amazed at her determination and the fact that she came up with it all on her own.

After the 5k we went to the Octoberfest at Ellen’s school. It is the biggest fundraiser of the year and there are pony rides and train rides, bouncy houses, an all you can eat sundae bar, balloons, face painting, the whole nine yards. They also do a very extensive raffle with over a dozen themed baskets and then 100 or so other prizes. Ellen’s class did a “dress up and dolls” theme with a bunch of dress up clothes and American Girl stuff. There were some really cool baskets, including two separate ones with Lego Friends (like 6-10 sets each), one with Legos, another with Star Wars stuff, one with like two dozen hardcover books, one with every type of craft supply you could ever imagine, and so on. They had like $250 worth of stuff each (the list and values were on each.) Grammy and I toured the baskets with Ellen on Friday night and she had her sights set on a Disney Junior basket with tons of Doc McStuffins, Sofia the First, and Jake and the Neverland Pirates stuff. We talked about how we probably wouldn’t win one but it would be fun to hope. I was really hoping to get one of the Lego baskets.

We bought 20 raffle tickets and Grammy bought 20 too. We spent about a half hour carefully choosing where to put them. We ended up putting about 5 of them in the Disney bucket but spread the rest around pretty liberally, 2 or 3 here and there. Then we headed outside and the kids bounced on the bouncey houses, each rode a pony, rode a train, and each got a balloon. Grammy bought some cookies from the bake sale for us to bring home. It was very busy, literally thousands and thousands of people, but it was a beautiful day and the kids ran around and really enjoyed themselves.

We left around 2 and headed to the library to grab a movie. We got Chinese food at 4pm and planned to make an early night of it. We were eating and watching The Emperor’s New Groove when I got a phone call. We had won one of the baskets! We were all freaking out! What are the odds? I jumped in the car to go and grab it and Grammy reports that Ellen kept clapping her hands together and saying, ‘Can you believe it?’ and ‘I can’t believe we won!!’ Harry was completely oblivious.

Turns out, we won the Disney Junior basket!!!

It is magnificent!

It’s full of books and sticker books and activity books and play sets and dolls.

Harry is enthralled with the Jake and Neverland Pirates Tiki Hideout and Ellen is loving the Sofia the First books and the Doc McStuffins play set and big book of boo boos. There are like 10 things we haven’t even opened yet.

As I was leaving the PTO President said, “Are you going to tell them about it or put them away for the holidays?” It was too late to tell them we hadn’t won but I thought about taking one of two things out before I got home. But everything was so nicely presented and I thought, “How often is this exciting thing going to happen? We should just let them enjoy it!” Full disclosure: There was a Sofia the First gift set with hideous soft dolls and a gift receipt so I did hide that after we unleashed the avalanche of toys and no one noticed. Or so I thought…Last night Ellen was looking at the photos of the basket and she pointed at the image of the doll (right in front, all the way at the bottom) and said, “Where did those dolls go?” I was all, “Hmm? What?” and she was all, “Those, Mom. Those dolls? Where are they?” I was all, “Hmm, I guess I don’t know.” LIES!

As I was leaving the school with the basket, there was a family getting in to their car and one of their kids was a young girl, I’m guessing in Kindergarten. She was just staring at me with her mouth wide open, gaping at the ginormous basket of toys I was about to stuff in my car. Her face was priceless and honestly, I kind of felt the same way. Holy shit. How lucky are we? So, right now things are good. Busy and crazy, but good. Maybe the basket is a sign from the universe that things are looking up? If not, we’ve still got tons of fun new toys.