Falling into a new normal

He is all over the place and climbs on EVERYTHING!

Ok, I will be the first to admit, I've been slacking on the posts...it's been over six months, but when it comes down to it, I'm glad I haven't had any huge news to update.  Things in our household have have settled down to a level I can deal with most days...

Happy boy figured out how to pull up and cruise,
and showing off his new feeding tube.
August 2014

Ryder is doing great.  He has remained seizure-free since mid-May 2014 which is a huge step in the right direction.  After a long and drawn out 7-week wean from his seizure medication, he finally stopped taking it on January 20.  He has been started on another anti-epileptic medication to *hopefully* prevent the other types of seizures he is likely to develop in the future due to his metabolic condition.  His neurologist was willing to completely take him off all seizure medications and just wait to see what happened...but I was not having a good day that day so when he mentioned that idea and I immediately started sobbing he quickly offered a "maintenance" medication to alleviate my obvious stress and anxiety over stopping all seizure meds completely.  Now that Ryder is off of the drug to treat Infantile Spasms, we wait...it was exactly one month after he stopped the medication last Spring that he relapsed.  I can't put in to words how painful an experience that was, but needless to say I will be able to breathe much easier when we make it to the end of February with no sign of this awful disease (that's not to say it couldn't come back months down the road, but that one month mark seems like a very big deal right now).  Ryder will have an EEG done next week to ensure the chaotic brain activity hasn't returned in the meantime.  But based on his physical and social development, I expect it will come back normal.  Fingers crossed!

While we have had several trips to emerg, none have been overly traumatic or lengthy.  Just the odd respiratory issue or gastro bug which in Ryder's case require IV fluids, bloodwork, and monitoring for a few hours.  In September, I was able to set up a conference call between Ryder's metabolic doctor and Dr. Venditti at the National Institute of Health in Maryland (he is the only doctor in North America who specializes in Ryder's condition).  The call ended with our doctor accepting Dr. Venditti's recommendations on changing the doses of some of Ryder's medications, and reducing the restrictions on his daily protein intake.  It was both frustrating and rewarding to get news of the changes because they were all things I had been requesting for several months (based on reading countless medical journal articles written by Dr. Venditti and his team) and our doctor had continually refused to acknowledge my suggestions.  We will be taking Ryder to Maryland sometime this summer so that he can take part in Dr. Venditti's natural history of MMA study.  

Practicing steps with Kara

He started private physiotherapy in June and the changes both physically and socially have been absolutely incredible.  While our healthcare system is great, seeing a government-funded physiotherapist once every 4-6 weeks for an hour is not beneficial in the least.  Kara is one of Ryder's biggest supporters, but she also has an amazing personality and makes my day better and more positive every time she visits (it's kind of like physio for Ryder and therapy for me!).   Ryder and Kara work together three times a week and we have seen such amazing progress, which I truly believe would not have been possible without her help.  Kara's super positive outlook and clear love for her job are admirable.  She's basically just amazing all around, and Ryder's huge gains in development prove it.  He began crawling in the July, standing independently in October, and took his first steps in November.  We are still waiting for him to use walking as his main method for exploring and getting around, but he has the skills, we just need his cognitive development to catch up and realize how much more efficient walking is compared to crawling...but it will happen...and hopefully soon! 

November 2014...some of his first steps!

 January 2015...making lots of progress!

While we have come to accept our new normal of multiple medications and an injection each day, a minimum of four appointments each week, bloodwork every four weeks, and hours upon hours feeling happy over every little accomplishment while at the same time worrying about what the future holds...this is our life, it's amazing, and I wouldn't change it.

My amazing boys