When it rains, it pours...but the sun will shine again.

April 30th marked 5 months to the day that Ryder had been seizure free.  It was also the same day he relapsed.  Shortly before bedtime that evening, out of nowhere he had 30 spasms over a period of 5 minutes.  After speaking with some knowledgeable parents of children that have the same seizure condition as Ryder, and having them tell me to wait until the morning to contact his neurologist, I took him to the emerg.  We were seen extremely quickly thanks to the handy letter we have from his metabolic doctor that says he cannot, under any circumstances, wait to be seen.  It was our shortest visit to emerg yet (4 hours!), and our first hospital trip that did not involve blood work, yay!  It was exactly what the other Infantile Spasms (IS) parents had said would happen...the emerg docs agreed from my description that it was likely his IS had returned but they did question whether it was simply behavioural.  They sent us home after requesting an "urgent" EEG...for two weeks later.  It's difficult to explain to other people, let alone doctors who think they know everything about epilepsy, how serious this form of epilepsy is.  It's not just a seizure here and there where brain activity is interrupted for a brief period of time.  If Ryder is having clusters of spasms here and there, that means his brain activity is interrupted and chaotic ALL THE TIME, even when he's not outwardly displaying the spasms.  He can't learn.  He can't develop.  He will regress and lose skills for as long as that chaotic brain activity is occurring.  We got ahold of the neurologist the next morning and he was started back on his medication within 12 hours of seeing that first cluster of spasms.  About 1.5 weeks later we stopped seeing the spasms.  On May 21st, Ryder had a clear EEG which we were incredibly surprised by since the medication he is currently on did not work when we had tried it in the fall when the seizures first started.  Ryder will stay on this medication for 6 months at which point we will re-evaluate with his neurologist.  

Ryder is now sitting on his own and is managing to get himself stuck under the couch/chairs/tables because of his crazy combination of rolling, a little bit of bum scooting, and some backwards shuffling on his stomach.  

He is incredibly happy (we all survived the grumpy seizure med phase, thank goodness!), smiley, and loves to laugh.  He has little conversations with us and waits for his turn to "talk".  He has also recently become interested in standing with support.  I am so incredibly proud of the progress he is making.  Having the seizures under control once again has allowed us to focus on all of the positive changes we are seeing, instead of being overly critical of the skills he may have been losing.  With that being said, it has been getting more difficult to spend time with friends whose babies are around the same age as Ryder.  Seeing what other kids his age are doing, it is so difficult not to compare him and see the skills he is lacking.  It would be so much easier to keep him in a bubble and be thrilled with everything he has accomplished and continues to learn, but I adore our friends and their kids and can't imagine out lives without them and the support they have given us.

Something to consider when speaking to parents of children that have medical issues...(and then I will go back to embracing all the positive things in my life, because there really are so many!).  I understand that it is a common saying, but please try and put yourself in the shoes of someone whose child is medically fragile.  I can't even count the number of times of heard (and please know that I do realize I am much more sensitive to these types of things now than I was before): "Blah, blah, blah, my life sucks...but at least my kids are healthy..." or "I don't care if the baby is a girl/boy, as long as it's healthy..."  Umm..so what if you kids weren't healthy?  Or your baby was born with a medical condition?  Then what?  Would you love them less?  Is a sick child less valuable/important than a healthy child?  Of course not.  Yes, your life would likely have additional stress, but it's still your life and that baby is still your baby and you will love them just as much as their "healthy" sibling, or as much as your would have if they didn't have something different about them.  Ok, rant over. :)