Redefining Normal

Last night Rob and I went out for dinner to celebrate our anniversary and we dropped the kids off at Bob and Beth's house. We had a perfect evening filled with great food and lots of laughter. After dinner we went to pick up Aria and Evan and had a glass of wine by the firepit while the kids played. They were up a little late but on a Friday it's not such a big deal. I couldn't help noticing how "normal" and relaxed I felt. It was rejuvenating and we both needed that.

This morning I was watching Evan sleep, his steady breathing gently lifting his chest. I marveled at the length of his eyelashes and admired his lightly freckled cheeks.

As I watched him sleep I noticed his hand twitching in his sleep. Not a seizure but maybe a neurologic induced movement. I watched him more closely just in case and within minutes his body began to shake in the rhythmic movement that defines what is now normal to us.

I snapped into action and gave him the rescue meds as Rob rushed into the bedroom. The seizure lasted 7-8 minutes, as most do for him. These are always the longest minutes, filled with worry and dread.

After the seizure Evan slept again, this time as a result of the meds we gave him but looking every bit as angelic as he did earlier.

This redefined normal weighs heavily on our whole family and I'd like to find a better treatment option, one that actually works. I'm looking forward to the day when my version of normal doesn't feel so warped!

NYC

We had a mad dash to Manhattan from Long Island today. Rob and Aria had to head home and Evan had an appointment with Dr. Weiner so we drove in and parked after dropping them off.

They picked up dumplings in Koreatown to eat on the way home and Evan and I had NY pizza. I'm not sure which child was more happy!

Evan and I wandered a bit and went to a movie before his appointment. We had a pretty nice afternoon and it's always so nice to see Dr. Weiner too. This was an info gathering appointment but it's a little nerve wracking to think about possible next steps if he keeps having seizures.

NY Doctor Visits and EEG

Evan is still having seizures and his neurologist wants to take a look at his brain waves again. She wants to see if, in addition to the seizures we are seeing, there might also be something going on in the background that we should be aware of.

So we made the trek up to NY to see if there are any answers to what's going on with Evan. He got hooked up to the EEG yesterday and we will be interested to hear the results after a few days of EEG monitoring.

Evan did really well with the process and it was helpful to have Mindy with him. The biggest complaint has been that his head itches.

We also had an appointment with his neurologist, Dr. LaJoie, to talk about next steps and treatment options. Today we will see Evan's neurosurgeon, Dr. Weiner. We try to follow up with him whenever we are in NY and it's always nice to see him and hear his input on the most recent MRI.

MRI

One of the hardest things to do is watch Evan receive anesthesia prior to an MRI. Two things make this challenging: he's scared and nervous so he sometimes cries or resists the process and we watch his body crumple as the anesthesia courses through his body. When he was smaller I would hold him and that was a more difficult psychological experience to have him in my arms as he lost consciousness and his body went limp.

Then there is the waiting. It seems like an eternity as we sit in the waiting room, waiting...waiting...waiting.

This year was the first time Evan had Mindy with him and we were amazed by how she reacted to Evan. His anxiety level was high and she knew it. The team was really good with Evan but the member of the team who really shined was Mindy!

As Evan laid on the table to receive his anesthesia, Mindy put her front legs across him and rested her head in his lap. She did this on her own with no commands; she just knew what to do and provided him the comfort he needed. He was petting Mindy as he fell asleep.

When he woke up, we were with him and Mindy was laying watchfully by his side. He was happy to see her when he woke up and quickly began his nurse-charming routine. He was very groggy and the first thing he asked for was Mindy. The second thing he asked for was the Skylanders toy we promised him. We knew he was on his way back to normal when he started playing on his iPod Touch. A couple popsicles later and we left with our eyes on the next prize: McDonald's!

Overall, not a bad experience. Evan was super polite and his manners were shockingly impeccable, especially given his altered state. I think he knows please and thank you get you treats and lots of attention in hospital settings.

Once again I find myself in awe if my son. In spite of everything he deals with everyday, he approaches these challenging situations with grace, humor and a positive spirit.

Early Morning Seizure

Last night Evan curled up in my lap like he used to do when he was younger and somehow he folded himself up to fit. I wrapped my arms around him and found myself wishing I could envelop him in my love and make everything better. Make his seizures stop.

As a parent, you want to be able to help your children with the small problems and fix the big ones, but in this area we are powerless.

We can tell in the days leading up to a seizure that one is brewing, but this can last several days. We wait and sleep restlessly in anticipation of being jolted awake by our seizing child.

The seizure always lasts too long and the minutes pass slowly in the tense air of our bedroom. After several minutes it finally stops and we are relieved, exhausted and left feeling beaten. Sometimes we sit speechless in a daze, sometimes we cry, eventually we turn off the light and go back to sleep. There is nothing else to do.

This morning Evan had a seizure and he slept in to recover from it before going to school. This time he remembered having a seizure, but often he does not. He was a little wobbly when he woke up but and also had double vision. Once that passed, his spirits were high, as they usually are after a seizure, and he cheerfully had breakfast and got ready for school. For us, the morning after a seizure offers frustration, concern and that ever-constant feeling of helplessness. We follow Evan's lead and get ready for the day.

Tonight Evan is sleeping soundly and tomorrow will probably be a good day.

So Thankful

November is a month filled with emotion for me. It is the month Evan was born, the month he began having seizures and the month Dr. Weiner gave us back our son through brain surgery. November is also the month we launched SeizureTracker.com and we feel so fortunate to have given this resource to the epilepsy community. Finally, November is Epilepsy Awareness Month and that seems so fitting.

It has been five years since Evan had surgery and to this day it was probably the best gift we ever gave Evan. The first stage of his surgery was just a few days after his birthday and the final surgery was just before Thanksgiving. That year we celebrated Thanksgiving with a collection of families from different cultures, all facing their own unique challenges. We were brought together by different events and all sat down to celebrate the holiday together at NYU Hospital. I will always remember that as the most symbolic Thanksgiving our family has celebrated together.

I am so thankful for the experiences we've had as a family. I love that our home is filled with laughter and my favorite times are when we sit at the table, lingering over a meal, laughing and telling stories. I feel blessed to experience this almost every day. Aria and Evan bring so much joy to our home.

The two newest additions to our family, Dinky and Mindy, never cease to amaze me. Dinky watches over Aria as much as Mindy watches over Evan. I love to see how much Mindy has bonded with Evan, and know their relationship is crucial to her success as his service dog. She has responded to seizures we didn't know Evan was having and she is his constant companion. Aria dotes over Dinky and he is happiest at her side.

We have so many people in our lives who have offered support, guidance, and relief through this journey and we are forever thankful for each of you. Some of you may never know how much of a difference you have made in our lives.

I am also thankful to be married to a wonderful man who is always ready with a smile, a hearty laugh and enough love to feed my soul.

Next month Evan gets his dog!

We can officially say that Evan will get his dog next month! Evan is getting really excited! Pretty soon he'll have a furry friend at his side.