Over a Year...

Over a year since my last post.  Yikes!  I have thought about that a lot over the past several months.  BUT, since time travel is still not possible, nothing can change that except getting on and doing a post.  So, here we go.

In this past year plus, much has changed and much has remained the same.

There were a few growing pains last year when school started, primarily with the program Evan is in as two programs merged (temporarily) into one.  Everything got ironed out.  We made the decision prior to the start of school last year to have him repeat 1st grade.  He was progressing as fast as everyone else in the class, but everyone else was more advanced than he was.  The gap just wasn't closing, and seemed so big.  By having him repeat 1st grade, it helped to close that gap for him and put him more in line with his peers.

Evan really made some strides both with his understanding of the various topics as well as in his social growth.   Progress in all areas, just on Evan's personal timeline.  I cried (literally!) when I saw his final report card.  He had scores on his general education report card I have wanted to see for 2 years, but feared I would never see.  Scores that he was "at grade level" in several areas.  All question as to whether we made the right decision by having him held back was answered, just like that.

In December he had a 24+ hour EEG.  This was his second such EEG and, as anyone who has been through one of these, it was emotional and difficult at times.  We choose to stay at the hospital for these so we have the benefit of the video component (VEEG).  All I can say is...Hats off to OHSU!  Both times they have really done a great job with keeping Evan engaged and entertained.  Art projects, visits from service dogs, various musicians, and Make a Wish was also there during this stay.  THE BIG NEWS of this VEEG is that it was drastically different than his last.  His last VEEG about 3 years ago apparently showed tons of abnormal activity.  This time, Evan's neurologist reported seeing just one abnormal spike (YAY!) and commented that he had to look at the old results to remind himself where Evan's activity had been.  We are all so very hopeful that he is outgrowing this!

After that, it was pretty much smooth sailing.  Evan finished up 1st grade and summer was upon us.  No seizures since the beginning of December, so we fell into a sense of comfort.  I, for one, was really starting to believe he had indeed outgrown them.  6 months, then 7 months pass.  The "reality check" part of my brain was still there, but with each passing day, became quieter.  Towards the end of July, our hopes were dashed (for now).  Evan had a seizure, and a post-ichtal like we had never seen before.  But, what do you do?  Even though we were heartbroken, we move on.  Start the count again.  Pray.

Evan has not had a seizure since then.  We are still guarded, but continue to be hopeful.

In August we took a trip to Wisconsin to visit family.  The kids were ecstatic to fly on an airplane.  I was nervous at first (how do I get all his meds/supplements in carry-on, what documentation do I need, what about food for him, etc), but after a phone conversation with a super nice guy at TSA (yes, TSA!), many of my fears were put to rest.  We all had a great time connecting with family, spending time at the family farm, doing a lot and not much.  One main highlight was going to Kalahari, a HUGE water park/hotel at Wisconsin Dells.  An epic trip and great cap to the summer.

Evan is now a bright and cheerful 2nd grader, and the year has gone very well so far.  He is definitely independent, and is determined to do a lot of things himself.

First day of School - 2016

Watching him grow is a daily gift.  Just this past month he has actually proposed a compromise to his brother when they were arguing about what they wanted do!  Normally it would have been the classic "Yes"... "No"... "YES!"... "NO!" back and forth battle.  I was sitting at the table at the time, and got up to guide and intervene.  When I asked what was going on, I couldn't have been more shocked when he told me about the compromise he had offered up.  I was speechless, and touched.  My heart was so warmed because we had been working on this for a long time.  The cognition aspect and the connections in the brain that make this happen, were THERE!  This time, the problem was his pre-teen-ish brother being a bit obstinate (oh the joys of pre-teen-hood...and this is just the beginning).

Another growth area has been a bit harder.  With all of these connections happening, his awareness is awakening.  Evan is becoming more aware of his epilepsy and how that makes him different.  He asked one morning not that long ago if I had seizures (I don't), then if dad and his brother do (they don't).  His face sank, and he said with sadness "So just me?".  I gave him a hug as I choked back tears and explained that there are many MANY people out there with epilepsy, some even at his school.  I hopped onto Facebook and showed him some pictures of people with epilepsy that were on one of the groups I belong to.  Many other boys, girls, adults...all ages, all so individual, also experience epilepsy.  He seemed to feel a bit better.  As his bus pulled up to take him to school, I wished we had more time to discuss it.  He often will make statements or ask questions about "when my seizures are gone", mainly around food/diet given his restrictions.  He wants to be able to have hot lunch once in a while.  He wants to be able to experience the same foods other kids get to experience.  I want that for him as well, so very badly!

This epilepsy thing isn't easy, but I am so blessed that God chose me to be his mom.  I'm thankful he is a tough kid and that we have a great support network.  I have faith that it is God's plan that one day he will be healed and get to have those experiences.