An Illustrated Guide To The Week: 2

Word on the street is that you liked the last "week in pictures" post. I promise, one of these days my comments are going to be fixed and you can all leave little replies under each post. Right now, it is looking like sometime in July..yikes! If only I were cool enough to crack html codes and figure it out myself. Alas, I have no skills in that area. Until then, keep posting on Facebook and talking to me IRL.

Saturday:

What 3 hour status seizure? Cole was up and at 'em, fixed the lawnmower with Dad and you would never know that he was in ICU less than 48 hours before. This child continues to amaze me. It takes me days to recover from a 10 minute seizure. Cue, "Eye Of The Tiger"

Sunday: 

Our agency pulled our nurse to another case, while she was on her way to our house. I was...upset.

Cole has been going through a gigantic growth spurt. His feet have grown two whole sizes since starting school in August. He now wears an 11...I think I wore an 11 in 3rd grade..he is 4 years old! I believe all of the growth charts that predict he will be over 6' 5". Need to work out some more so I can have hope of lifting that! I got him some super cute orange Sperry's at Nordstrom Rack on mega sale. I hope that they last more than 3 months! We had the missionaries and some friends over for dinner. Sunday, other than the nursing issue, was lovely.

Monday:

I did not send Cole to school since his teacher was sick and that meant germs could be hiding out in the classroom. I went to my usual Monday morning routine with three of the cutest little kids ever. Then, after I got home, we did average little kid stuff! It was hot, but we armed ourselves with the cooling vest (our new one should be here soon!), hat (that is also too small), Fl-41 glasses and set off on a nature hike with friends. Cole loved scooping up moss and sticks in his net and looking for "creatures". It was short and sweet, little over an hour, but hey-a true play date! THAT does not happen very often.  We come home and Cole starts having LOTS of little seizures.  Including 5 drop seizures, which have been in hiding for over two years.  I got nauseous and anxious just thinking about going back to the days of the helmet and having him within arms reach at all times.  I quite enjoy using the restroom by myself every once in a while, thanks.  He hit his head on a chair on the way down and got a gigantic bump right where there used to be a permanent one from all of his falls

Tuesday:

I knew that traffic was going to be awful on the way to therapy.  We drive right by Dulles Airport and I had already seen lots of posts on Facebook, etc that the roads were extremely slow.  Why?  The Space Shuttle Discovery was piggybacked on a huge aircraft and circling the D.C. area, then landing at Dulles before going to its new home at the Air and Space Museum.  We left early, since it usually takes us an hour to get out there.  We actually got to see the shuttle TWICE!  Once while it was circling, and then we were right by the airport when it landed.  This is an awful picture, but I pulled off the side of the road with hundreds of other cars and tried to take it with my phone.  It was so amazing to see how little it looked in the sky and then bigger and bigger on its final approach.  It was right above our heads at one point and I just couldn't help but think of my family. I am married to someone who grew up on the Space Coast and could be defined as a space geek. Plus, our brother-in-law worked for NASA for 15 years.  He had personally put his hands on Discovery many, many times.  We have seen Discovery in the hangar and Atlantis and Endeavour on the launch pad at Kennnedy Space Center during an employee Open House in 2009.  I will never forget how gigantic they are, and how patriotic I felt.  In fact, looking at all of the pictures again makes me want to do another post about the experience.  I will refrain! Here are a couple of pics from that trip :)

A true piece of American History has retired.

Wednesday:

Wednesday was, kind of, a normal day.  I sent Cole to school, he was fine except for all of these myoclonics that have been coming full force this week.   Have not seen any more drop seizures at this point.  I exercised for the first time in a week and still can't walk correctly a few days later.  I really should know better than to do an hour of squats and jog/walk for a half hour.  I was watching Breakfast At Tiffany's on my laptop in prep for an event this weekend and was thinking I was so cool for multi-tasking. Ouch.  I couldn't stop looking at our new photos and can't wait to share them with you on the blog.  All in due time.  For right now, enjoy this one-if it doesn't make you smile, I don't know what will!  Cole was still having lots of myo's and we gave him rescue meds twice on Wednesday to stop the cycles.  He woke up 3 times in the night, for extended periods.  He always wakes due to seizure activity, but this time he stayed up.  Weirdest thing ever, he asked for food at 4 am.  Seriously?  This is a kid who hardly ever eats, let alone asks for food.  He wanted a quesadilla.  So-he ate an entire quesadilla around 4:30 and then went back to bed.  SO strange.

Thursday:

I could hardly sleep on Wednesday night, never mind that Cole was up and down the whole time.  I had a huge meeting with the school district Medical Review Board.  This meeting is to approve nursing for school hours.  Bottom line-if Cole doesn't have a nurse, he doesn't go to school.  So-big deal for us.  Last year, I came out of this meeting and cried in my car.  The board had told me that I was going to have to homeschool Cole because he was too complicated.  Low and behold, the warrior in me came out and I fought multiple battles and won!  This time, I actually had the principal and Cole's teacher with me, on my side.  I can't describe how good it felt to have the principal of his school stand and say to the board, "I would be extremely disappointed as a professional, if you do not make this happen".  She went to bat for Slugger and Cole, so did his teacher.  It. was. epic.  I started to cry (not my forte.  I rarely cry anyway, and never in meetings!), I was so overwhelmed with emotion and admiration for these two ladies who have helped to change our life.  The majority of Cole's class is sick, so I kept him home.  His teacher came to the house and finished the end-of-year testing before we have his IEP next week.  It was great to get to talk to her one-on-one for an extended period of time.  I (sometimes) miss being in her classroom every day.  There were multiple times during the testing that my eyes got big and there was disbelief all over my face when I heard and saw Cole's answers.  He truly amazes me and has come so far in so many ways since starting school.  For example, one question is-"what do you do when you are tired?".  Cole answered "Go to sleep!"  I was thrilled!  His answer for that particular question last time was a blank stare and running off to play with toys.  He is still really behind on some things, but other areas he is almost to age appropriate, Hooray!  During the testing and in the hours after, I saw more eye flutters than he has ever had in one day.  That, coupled with increased myoclonic jerks, I knew he wasn't doing well.  Slugger alerted and I just thought it was for the clusters.  I was wrong.

Around 8:00, the boy I nanny was picked up after staying later than usual.  I was exhausted.  Took Advil for my sore muscles and a throbbing headache and went upstairs to take a hot bath while Brian got Cole ready for bed.  I had just shut the water off and was settling in when I heard, "Nik?!  Can you come down here?"  I sighed, then went into action.  Cole lost his urine at the onset, which is not normal.  He started with a right sided complex partial, which generalized.  His fists were clenched, also not normal.  His breathing was really junky and we thought he might aspirate.  I really think it is time for portable suction in this house.  We called the paramedics because it had been over 20 minutes and no sign of slowing down even with 17.5 mg of Diastat and 3 mg of Versed.  It is always fun to run around, get dressed and pack a hospital bag while you are simultaneously trying to keep tabs on what is happening with your child.  Cole finally stopped seizing after 30+ minutes, right as Brian was carrying him out to the ambulance.  Glad I didn't send him to school, or there would have been issues there, I am certain of it.  Adrenaline made certain that I was not going to have that peaceful slumber that I craved.  Our neighbors and friends know that we are never boring. 

Friday:

After the meeting on Thursday, I picked up this beauty at a thrift store.  The bell won my heart.  Not bad for a thrift find-only $19.99, versus $70 for one like it at Wal-Mart.  We don't know how well he will do on it, and I am certain that he is not going to be able to figure out the brakes.  Homeboy's gigantic legs are just too long for his tricycle though and he needed something else.  Riding a bike takes a lot of core strength and coordination, so we are hoping that he will get a lot of physical therapy from it.  So far, he has just run into a lot of walls :)  Hopefully, the rest of today is uneventful.  I do not have a nurse for 6 days, since my main one is on vacation and the agency can't seem to find a replacement.  Bother!

I am going to the White House Spring Garden Tour tomorrow afternoon and Gourmet Club in the evening.  So looking forward to having a moment or two to myself.  Then again, Dravet could throw me a curve ball and interrupt the best laid plans.  Oh, well!  We will come back fighting.  Always.