Exceeding Expectations

A year has passed since the last Ryder update, and as I said last time, I'm happy I haven't felt the need to post sooner, but it has been a crazy year.  It took some time to process some of the information/changes and I didn't feel like I could hold it together if there were any questions from the people in our lives who care so much about our family.

At the end of January 2015, Ryder went for a follow-up EEG shortly after he was weaned off of the seizure med that was treating his Infantile Spasms.  It showed none of the chaotic brain activity that had been present before.  We had been expecting these results because of the improvements we had seen in Ryder's development and awareness, but it was still exciting to hear someone say it out loud.

During January 2015, Ryder started an "intensive walking program" with his government funded physiotherapist.  This resulted in 6 physio appointments per week (3 with his government physio and 3 with his private physio)...it was exhausting to say the least.  While I greatly appreciate all the people who work so hard to encourage Ryder and push him to reach his full potential, there are some people who should not be working with children (or more specifically be allowed to speak to the parents of children with special needs).  At every appointment during his walking program I had to listen to the physio tell me that it was quite possible Ryder would never walk on his own...that I needed to practice more with him using a walker at home (because we weren't already busy enough)...that he had to learn (ie. I had to force him) to keep his hands on the supports of the walker because if he couldn't do that, then he wouldn't be able to use the walker, and if he couldn't use the walker then he wouldn't be mobile...it was defeating.  No parent wants to hear that their child will never do something as "simple" as walk.  

I helped strap him in to a crazy contraption that was teaching him how to put one foot in front of the other, and walked in front of him waving toys and singing like a crazy person trying to keep his attention.  I felt so much pressure to ensure he made progress. At the beginning of the intensive walking program, the physio said that if he wasn't making gains, then she would cancel the remainder of the sessions and try again in a few months.  For those that know me well, I don't like to lose and I don't like to be wrong (at least I can admit it now!).  I couldn't let her "win" and be right about Ryder not having the ability to ever walk.  I had to prove her wrong, I had to win this one. However, we really didn't see much progress with the walker and the other weird machine he was using.  He continued to let go of the handles of the walker, and would get bored and just sit in the middle of the hallway while we were doing laps. It was (as has been the case with many of the things in Ryder's life) just such an incredibly forced and unnatural way to learn how to do something that comes naturally and easily to vast majority of the population.  Luckily for me, we have our amazing private physio (Kara) who continued to work with Ryder during his other walking program.  This was where we were seeing the gains.  He had been taking a small number of independent steps with Kara for about two months, and plateaued around 6 steps in a row.  The following week he jumped up to 12 steps in a row.  A few weeks later he took 26 steps for Kara (the same week the other physio told me once again that it was likely Ryder would never walk on his own), and then that evening in the middle of March 2015 we went outside to play with Ethan, and Ryder just started walking completely on his own.  He'd figured it out and hasn't looked back since!

Ryder had his appointment with Ophthalmology at McMaster at the beginning of March and we were pleased to hear they were happy with how his eyes had continued to develop after being diagnosed with Delayed Visual Maturation (basically they said his eyes were just developing slower than would be expected, but that they were developing).  His nystagmus has greatly improved and was mostly only noticeable when he is tired or is trying to focus on something that was slightly out of the central field of vision. They prescribed glasses to help with the alignment of his eyes so that it was easier for him to use his vision more effectively.  A few weeks later I took Ryder to Sick Kids in Toronto for a follow-up Ophthalmology appointment and to have an ERG done.  The ERG is a sedated test that allows the doctors to evaluate his vision more precisely and was being used to check if Ryder's seizure medication had damaged his peripheral vision in the past year.  I was confident that this was a pointless appointment because we'd just had a great check-up two weeks earlier.  I came back in to the room and the conversation went something like this...
Doctor: The test went well.  His peripheral vision has not been damaged.  Ryder has bullseye maculopathy and his central vision is significantly reduced.  
Me: Umm, what?
Doctor: He has lesions in the back of both his eyes.  He can't see out of the centre of his eyes.  He can't see your face.
Me: Silence...
And then the doctor walks out...I had no words, I couldn't tell him to stop and come back and explain what the heck he was talking about.  I had a million thoughts going through my head: No, this guy is wrong/The Mac doctor *just* told us his eyes were good/This isn't supposed to happen until he's 10/He's walking around and doing kid stuff/He has to be able to see/He can see/He doesn't know what I look like/He won't be able to read/He won't be able to drive/He has to be able to see...It just kept going until I was sobbing in the treatment room while Ryder was unconscious on the table.  The nurse asked if I was ok.  I said no.  Because I wasn't.  This guy I had never met before, and hadn't even introduced himself to me, just told me my baby was essentially blind, and then walked out of the room...all in a span of 30 seconds.  She asked if I had been told this information before, although I'm sure she already knew the answer based on my current state, and said she would watch Ryder while I went and called Ben, and that she would get the doctor to come back and provide a better explanation.

A few days after the surprising eye diagnosis...
he's still the same Ryder he was before!

When the doctor came back in, he did re-state what he had said earlier, but didn't do a very good job of explaining what all of this meant.  He couldn't tell me how much Ryder could see, but he did say that Ryder had likely had these lesions since birth.  He couldn't explain why no one had ever noticed this before.  He couldn't tell me how long it would be until Ryder's central vision was completely gone.  Basically I didn't get any answers.  It was a rough few weeks.  I overanalyzed every little stumble, trip, and fall, and started noticing new things about the way Ryder looked at people and toys.  Then I started to think more logically.  The reality was that nothing had actually changed since before the appointment at Sick Kids.  Ryder's vision was exactly the same as it had been before.  The only thing that had changed was our understanding.  When I came to that realization, things calmed down and went back to our normal.









Well, this has been a long one, and I only covered three months of the past year! Thanks for reading. We appreciate everyone's support of Ryder!