Non-Emergent EEG (3rd one) in Parker

In December Charles had a non-emergent EEG repeated to see if anything had changed from his December 2011 seizures. Grandma Dianne came to the rescue to help take care of Charles during this procedure - she brought her trusty iPad and showed him videos, etc. Once again, thanks Mom!! And, Thanks Aunt Cami for watching Liesl that day. It takes a village to raise Charles. :-)

Charles got to play with some cool toys in the waiting room first. The smile is when he was SO excited that the tech was taking the wires off. I have to say, at first I was leary that there was only 1 tech assigned to do the EEG on Charles, and that since it was outpatient and not done at Children's, I wasn't sure it would go very well, but this tech did a great job. And, so did I keeping him happy for 1 hour. Thank heavens for iPads, books, stuffed animals, and MANY different snacks.

Grandpa's 70th Birthday Weekend...and of course a seizure weekend too

My Dad (Charles' Grandpa) turned 70 in December 2011. His brother and sister and their spouses came to town for the party - Uncle Tom & Aunt Vylee and Aunt Janet & Uncle Eric. Being Jachs, we had to add a little drama to the already busy weekend. But let me back up first. As Charles parents, we have spent his whole life making sure his naptime is the PRIORITY...as we know his rest is so important to help avoid seizures (which we've decided are brought on by a few different things - overstimulation, under-rested, under-medicated, ear infections, etc.). So, for the first time in probably 14 months, we let Charles "stay up late" and "party" with the family for my Dad's 70th. Well, we thought we were getting punished for it when we ended up in the Children's Hospital Emergency Department, yet again (I think that's 4 times now). However, after visiting with the docs, we realized that since it had been his last appointment with Neurologists, Charles had gained 10 lbs, but yet his Rx had never been increased - so he was being under-medicated. At that point, they raised his Keppra amount again - almost doubling it - to 2.5ml (originally 1.3).

May 2011 - Neuro Outpatient Clinic Visit

Charles had some seizures in either April or May of 2011, after not having had any since New Years Day. In May 2011, Annie (Amelia's best friend) was in town for a "girls weekend", and I had a quarterly outpatient neurology clinic visit at that time. Annie got to come with me and we asked lots of questions. As I recall, they increased his meds at that point from 1.5ml to 1.8ml per dosage. Annie, Charles, and I got the famous "Children's Hospital Gelatto" as a treat afterwards. I should have Annie write this post because she will remember it so well, but she and I discussed the amazing atmosphere at Children's Hospital - it's an overwhelming feeling - it's intense, it's impressive, it's huge, it's emotional, it's slow, it's busy, it's hopefully healing. When you go with your child, you are quickly made aware that SOOOO many children are SOOOO much worse off than your child. It emits emotions that are sometimes too overwhelming. One anecdote, we always "valet" the car when we go to the hospital and one time, they valet guy said "how's Charles"? I was flabbergasted. Although I don't have a picture of that day, this photo was taken of Charles the week before - at the park. I've decided I really should include some photos of Charles being his fun, happy, young self and not just a "patient". Charles likes his PJs whether he's at the hospital OR the park. Yeah, 4th child, PJs BECOME their outfit. I just LOVE this baby.

New Year's Day 2011 - and what a day it was...

On New Year's Day 2011, Charles was 9 months old and the seizures reared their ugly head again. By this time, he had been on meds for 3 months, so were they doing the trick? As I recall, we spent 10 hours in the Children's Hospital Emergency Deparment (now, for the 3rd time). The neurologists requested a repeat of the EEG to see if they could capture the tremors/seizures/jerks while they were happening. All the seizures to date looked like jerks or shaking or pulsing. They would last approximately 4-5 seconds each and he could have up to 200 per day. But he would only have them for 1-2 days, then sometimes go months without having them again. Grandma Dianne took care of all of the kids back home - Charles' 3 siblings. Mom - thanks for always watching the kids, coming to the hospital to support us, accompanying me whenever Ken needed to work. And, thanks everyone else for all your support...baby blankets, blessings, meals, identifying the seizures, etc. I'm going to try to remember to mention everyone involved whenever possible.