So it's been a bit of an unsettling couple of weeks leading from January into February. I rushed Ryan to the ER after what I think may have been a possible seizure. My heart was in my toes on the way to the hospital and while they were checking him out. The doctor on call got a hold of Ryan's neurologist who said that he would set up an EEG for my little guy. This all happened on a Friday. On the following Monday, I called the neuro's nurse to find out where things stood with an appointment but she didn't have any information. This went on ALL WEEK...it was infuriating! I kept calling the nurse and the EEG unit but an appointment had not yet been made and a requisition hadn't even been sent yet...WHAT? Finally a week and a half after taking Ryan to the ER we are told that an appointment had been made...FOR MARCH 19th, 2012! Apparently the neurologist doesn't feel that what I described was something concerning. The fact that he hadn't done it again since makes him even more confident that Ryan is ok.
Now in the last week or so Ryan has been making 'funny' faces and having a bit of body jerks (or are they just funny baby/toddler movements). The thing is once you have a child diagnosed with any type of epilepsy you question and panic about any new or strange movement they make. It's like being a parent to a volcano and you're just waiting for it to erupt. I don't know if Ryan's Infantile Spasms are breaking through his Vigabatrin medication and coming back in a different form or if I'm just being paranoid. Regardless, I just want someone to take me seriously! I took some video the other day and sent it off to his pediatrician who didn't feel it was anything to be worried about as Ryan didn't show any sign being "out of it". The video's have been sent to the neurologist and after a follow up call from myself I am waiting for a return phone call.
On a brighter note, yesterday (just a day after the 1 year anniversary when Ryan was diagnosed with Septo Optic Dysplasia) he held and brought to his mouth a vibrating toothbrush that lights up! He's been holding and playing with things more lately and just recently started learning how to put things in his mouth. This toothbrush though is amazing! When he was on his tummy it rolled away from him...he reached out to get it...put it in his mouth and moved it back and forth a bit!
He is awesome!
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