Texas is Seizure Free for Christmas Break

We went on a road trip to San Antonio the week between Christmas and New Year's.  I don't think Charles had seizures that week (the only full week in a year).  We had a great week filled with fun activities with our friends, the West family.  I can only attribute it to LOW STRESS.  Annie and Micah took good care of us all week. As an added bonus, Charles caught his first fish. 

 The Alamo

 

PET Scan Nap

Another step in the process towards surgery is a PET scan.  Pretty uneventful, but one funny story.  Right before he went into the machine I told him "get in the zone and take a nap" (that way he would stay still).  He said okay.  The specialists looked at me like I was crazy.  It's only a 15 minute procedure.  Sure enough within 2 minutes he was snoring.  That's my boy, any chance for a nap.  They had to wake him up after 13 minutes, they couldn't believe it.

Neuropsychology Evaluation

As another step towards surgery, Charles had to have a 6 hour neuropsychology evaluation with a pediatric psychologist at Children's Hospital.  Some of you may or may not know, Charles is VERY smart.  I put him in his "Genius" shirt just in case they didn't get that :-)  He was a trooper.  It was a long day for him, even had to have a lunch break in between.  We got his results back a couple weeks later in the mail and his IQ was near the top of the scale.  I always thought it was smart, but now I have proof.  Its amazing to his doctors that no matter what he's been through this past 6 years that he's still doing so well academically and that it hasn't affected his cognitive abilities. 

September EEG Repeated with SPECT, Plus "Code Blue" Night

Each test and step Charles takes is one step closer to finding out where EXACTLY the seizures are coming from in the brain.  So, we went back to the hospital for another 1-week EEG, but also added SPECT this time.  He did great.  I slept every night at the hospital.  One night, I woke out of the dead of sleep at 3am (which I never do) and sat up and immediately thought I needed to check on Charles.  I ran to his bed and he was barely conscious, I immediately hit the seizure button AND the nurse call button and they came in.  2 Nurses totally panicking, and one asked the other under her breath "should we call 'code blue'?" I said ?WHAT?! If you're thinking about, then DO IT!"  I texted my mom (she sleeps with her cell and Ken and I don't) to call Ken (and he was there within 13 minutes - it's a 20 minute drive).  About 30 doctors, nurses, specialists, etc were there within a minute, all working on him.  His nurse did chest compression as they couldn't get a strong pulse.  He was ultimately okay, but what a TERRIFYING experience.  They don't use heart/pulse/oxygen monitoring as a regular practice on the EMU floor (Epilepsy Monitoring Unit).  Everybody asked how did I know to get up, my response is "God woke me up".  That's all I can say to explain it. 

That night (actually morning now) after things settled down, an Epileptologists by the name of Dr. Pramote Laoprasert called me to explain that he reviewed his EEG from the night and that he was okay (obviously not super great though).  He had a grand maul while sleeping, which has not happened to our knowledge.  He had a thick Thai accent and I was probably impatient and unkind based on the horrible night we had just had, but it was also hard to understand him (since it was on the phone and lots of people around) and I was exhausted being up half the night.  That was our first introduction to Dr. Laoprasert, which would later become our "favorite doctor ever".

Charles got lots of fun gifts that week from friends, neighbors, family members, etc.  One of his favorites though has been a patchwork (I Spy) blanket that my best friend Annie West made him.  It's been a GREAT conversational piece whenever he has hospital visitors, staff, etc.  The Child Life ladies stopped by one day and helped him give his bear an IV....it was VERY entertaining.

Wedding Weekend - Charles is asked to be Uncle Phil's ring bearer...

Charles' Uncle Phil (Ken's brother) and his Fiance (now wife) Kim, asked Charles to be the ring bearer at their wedding!  This was very cool and Charles was SUPER excited!  But the night before the wedding, I found him a little teary eyed right before bed time.  I asked him what was wrong.  He said "what if I have a seizure when I'm walking down the isle".  I said "let's say a prayer that, that won't happen".  His faith is amazing to me! He felt better after that and went to sleep.  The next morning was the wedding.  He got through the wedding ceremony and walking down the isle with NO PROBLEM.  Then, 30 minutes into the reception, the seizures continued, but he got his reprieve long enough to fulfill his responsibility. 

This is quite often the sight of my boys after Charles has seizures. David holds his little brother while he's recovering. So sweet. Thanks mom (Dianne Greaves) for capturing this sweet pic.

July 2016 - Our First week long EEG

After meeting with the doctors over the past 9 months, they recommended we did a 1 week stay at Children's Hospital for a 5-day EEG to capture seizures to identify where they were coming from.  Charles was a trooper.  Unfortunately at one point, we went to look out the window (remember, he has a fear of heights) to see brother David looking for a Poke'mon Go spot.  And all of a sudden, he had a grand maul seizure.  I felt horrible, but the doctors had lowered his meds in order to induce seizures that week, so I guess we got some info we needed, but they are such awful seizures, they always make me super nervous.

He was sure happy when he was done and they washed his hair in preparation for going home.

Kindergarten and Swim Team/Summer 2016

I'm doing a little "catch up" but Kindergarten (2015 to 2016) went pretty well.  He was able to go to school almost every day.  He also swam on his neighborhood summer swim team and he did GREAT.  He won almost every race, a real natural.  He only had a couple of minor, minor seizures when in the pool (we watched him closely) and a few at the park when it was play time on Friday nights with his teammates.    We also had a trip to Vail for an annual work conference I go to (and bring the family)...on the drive up he got SUPER car sick so we had a detour to Vail Hospital (hence the 1 hospital pic) but looking back on it, I think it was some seizures in his belly, which has also happened since then.  We were in Vail during the GoPro events so that was a super fun weekend to be there.  Charles went to his first concert (didn't last long, as loud noise and crowds are a couple of his triggers).  He loved swimming at the hotel pool, eating ice cream, and trying out his slack line skills.  We also had a trip up the Gondola (for which he didn't look overboard, fear of heights also a trigger, and a big one).   Summer 2016 went pretty good, but when we started 1st grade and in school all day, it all went downhill for his seizures.