A day spent at DuPont Hospital...

Honestly, my head is still spinning!  We had two extremely important dr.'s appointments for Ryan on Wednesday, October 20th.  Each equal in the weight of importance and it was anything but easy.  Our time spent at DuPont was overwhelming and daunting.  Ryan seizures are now known as "Progressive Myoclonic Epilepsy" b/c they are changing how they present. His neuro. no longer refers to him as having "Myoclonic Epilepsy". His seizures use to present as "hiccup like episodes" and now they are presenting as "laughing spells". The neuro. has once again upped his meds and it was explained to us (both Ron and I) that his neuro. truly does want Ryan to be seizure free and unfortunately this is the only way they can do it :(


Then, it was on to Ryan's ortho. dr. where he went over every little detail about Ry's Gait Lab experience. I will say I was fascinated till he started to say those dreaded words, "Ryan does require surgery"! Apparently, Ryan has moderately tight hamstrings and needs hamstring lengthening surgery. The good news is that he doesn't need the surgery right away. His ortho. dr. said sometime in Spring would be great.


We traveled home from Delaware in silence, maybe each of us needed that silence to regroup?  Once, we were home we literally kissed the boys and we were off running again to an Epilepsy Conference.  It was an awful amount of traveling we did on that day but who knew that the last event we attended would be the most rewarding?!  I learned more at the Epilepsy Conference than from Ryan's current neurologist.  It was absolutely fascinating, and it is mind boggling thinking about the different types of seizures that men, woman, and children experience on a daily occurrence.  It was gratifying to be a part of this event.


Love & HUGS,
Jenny, Ron, Ryan, & Lukey :)

Pumpkin Pickin' 2010

With everything going on with Ryan, I almost forgot to mention that we went pumpkin picking, our family and my sister and her new boyfriend.  I'm not going to lie, with all that is going on in our lives I wanted to cancel but it was my sister who told me she had A LOT of fun pumpkin picking last year that she wanted to do it again...with her boyfriend.  I will state she sorta twisted my arm :)  You know what the boys had with the festivity of pumpkin picking from Johnson's Farm.  As you will recall, it was Ryan who told Lukey, on his very 1st Halloween Season with us, that we don't buy our pumpkins from a grocery store, we pick them from the ground at Johnson's Farm!  Too cute!!!

This year I tried to make it a bit more festive and put them in matching shirts, (I believe this was more for me than for the boys...to get me into the mood of Halloween) Ryan with his skeleton shirt on and Lukey in matching attire BUT if you notice Lukey's has candy that is in the stomach part of his skeleton :)  Everyone who knows Lukey, has said boy is that shirt appropriate :) 

As you will take notice to the last four photos...we went to another farm b/c I had a coupon and boy was that a disappointment :(  Ryan told me it was a faux Johnson's Farm and he was not impressed-LOL!  I told my sister about it and she said to me, "See that's what you get for going with out Chris and I"!  All in all, our family and now my sister and her boyfriend too, love Johnson's Farm :)

Love & HUGS,
Jenny, Ron, Ryan, & Lukey :)

Break Through Seizure Activity

I want to write that everything is going great in our lives...but the truth is-it isn't :(  We are almost 99% positive that Ryan had break through seizure activity on October 5th and October 16th.  Its extremely difficult to pin point when Ryan has a break through seizure that if you blink and don't realize what you are watching you will miss it and just go on as if it were nothing...maybe just some behavioral issues or him being "funny" or having these laughing spells.

On October 5th, I get a call from the school that Ryan had an accident, which is not like Ryan at all!  I thought nothing of it, went into school brought a change of clothes and that's it.  It wasn't until the next day, when I read the most disturbing news and realized Ryan did have a seizure!  I received an email from Ryan's resource teacher (who I adore and Ryan does too, she truly is the type of person who exudes care) that Ryan was acting "funny" almost drunk like she said to me in this email and then she realized he became incontient and had an accident.  He doesn't remember any of this.  His neurologist upped his meds...once again :/

Then, on October 16th, we went to Ryan's Trail-A-Thon at Shadow Equestrian, which Ryan was excited for but at the same time he wasn't acting like himself.  Again, he was acting as if he was drunk, the fact that everything everyone said was funny, his legs were jelly, and he kept on falling.  To make a story short, we eventually went to the CHOP's ER and trust me if I had to do it all over again we would have went to DuPont :/  CHOP's ER couldn't or wouldn't do anything for Ryan, b/c Ryan was not in any distress once we arrived at the ER.  The attending physician told us, short of reinventing the wheel there is nothing we can do for him-AHHHH WAS SHE KIDDING ME???  We walked out of there just as clueless as we walked in, not a good feeling!  CHOP suggested we call Ryan's regular neurologist on Monday and explain to his scheduling department that we were in the ER.  I did follow this advice and we see the neurologist on Wednesday.  Also, we have Ryan's Gait Lab Analysis on Wednesday...can't wait...stay tuned!

Enjoy some photos of Ryan at his Trail-A-Thon, even though everything was a mess that day he did do a spectacular job on his horse, Shadow!  He received a trophy and a ribbon, he's all about the trophy and the ribbon :)

Love & HUGS,
Jenny, Ron, Ryan, & Lukey :)