Glycine Encephalopathy

The trick in life isn't getting what you want, it's wanting it after you get it।

Well Sept. is almost over & Tyler is doing remarkably well with his peg tube, we will go into the hospital again with in the next month or 2 & have a Mic Key button placed in. Which is going to be a lot better for many things & I won't go into all the messy details on the PEG tube.

Tyler & Cory had a nice, happy & peaceful birthday. Tyler had NO seizures on his birthday & we actually went 6 days w/o : ) He has had some very mild ones only lasting 10 seconds or less, however, we'll go several or 6 days with out & he's been off the last mono therapy AED last week.

We will continue to keep him off those meds & plan to do more Cranio-Sacral therapy which I've paid for a class to learn & kinda try to practice now & we will continue to do acupressure massages, hopefully daily if I find time, micro current therapy ( like a tens machine, but more detailed & programmable to meet individuals needs) we also will keep doing acupuncture @ least once a month, Tyler loves it!
We also have been enjoying moxa/moxi combustion sticks for therapy enabling the GI tract & immune system to function as normally as possible without giving to much western medicine.

I am really liking the journey that has led me to find a balance of Eastern & Western medicine~I am still fine tuning & somewhere in all this we still have to be just parents.

Tyler is an extraordinary human being, who will lead not only those with Non Ketotic Hypergylicemia NKH) / Glycine Encephalopathy http://www.geneclinics.org/profiles/nkh/index.html
or special needs, but everyone who has been involved with all kinds of people to become braver, stronger, beat the odds, humble, happy & everything good.
He makes me want to be a better person, & teaches me to do the right thing even if I am the only one ( besides him) who agrees.
My job is to do what is best for him & anymore I just operate on intuition. He is my life & I will do what I would want care givers to do for me if I were in the same situation.

We have come a long way, but lots more to go...