Sunday, 12 February 2012

These are the 'easy' days...

I hope this post comes out making sense! My poor husband has been working "night" shift and in court during the day all this week. I therefore, have been holding down the fort as they say...not to mention my sanity!!!

Last week I received a call from the neuro's nurse letting me know that her and the doctor viewed the video's I sent over. He didn't feel there was any rhythmic like motions in the 'new/strange' movements Ryan was making. He seemed to feel confident that it wasn't a new form of Infantile Spasms or any seizure like activity all. I believe him because I want to.

One of the things I find so intimidating about our new life is that these are the 'easy' days. I could be wrong who knows. It's so hard not knowing what the future holds. Sometimes I wish I had a crystal ball to prepare us for what lies ahead. Other times I'm kind of glad I don't know. Ryan is almost 16 months old but physically, emotionally and mentally functioning at about 6 months old. Will he ever catch up? Right now it's easy because he still looks like a baby and feels like a baby. He'll be getting older and bigger though...will he still act like a 6 month old when he's 2, 4, 6 years old? As the neurologist has told us a couple of times Ryan will never be "normal". Can I tell you how much I hate that word...hate it with a passion! He may never be a typical little boy, teen, man. But I can't and try not to focus on that. I turned a corner a little while ago in my thought process in getting through all this and it was because of a blog I found. A Mom of a special needs child said that becoming a parent to a child with disabilities is kind of like if you were planning a trip to somewhere you've always dreamed about and ended up somewhere completely different. You've read all the books, packed your bags, you've dreamt about all the possibilities and excitement of going to Italy. Then, your plane makes a very, sharp and abrupt change of direction and you find yourself in Holland. You don't want to be in Holland. This isn't the place you had dreams of, this isn't what you were prepared for but then you look around and see all the beautiful things like tulips for instance. You soon realize that Holland is just as exciting and incredible as the place you originally thought you would be. You see the beauty and possibilities this new place learn so many things and appreciate the 'trip' that much more. Reading that helped me give my head the shake it desperately needed. Instead of dwelling all the time on the future unknowns and the current fears and worries...I instead try to focus on how Ryan amazes me given all his disabilities. The other night he sat on his own for 42 SECONDS!!! When I feel how strong he's getting and when I see him watching and focusing on certain things it's an incredibly amazing feeling. Yes, I will still constantly be wondering and worry about Ryan's brain and it's function. Will he just have mild learning disabilities? Will he be autistic? Diagnosed with cerebral palsy? Will he be mildly or severely mentally challenged? Will he know his Mommy, Daddy and big sister love him so very dearly? Will he be able to love us back, say Mommy or wrap his sweet little arms around me in a hug? It's all so frightening and it's thoughts like that that I am forever pushing to the back of my head so I can get through each day. If I wasn't able to do that what kind of mother would Quin and Ryan have....?

Monday, 6 February 2012

New Seizures? Or Mommy Paranoia?

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 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!