And we Wait.........

Unfortunately Avery is not getting a new line whatever that maybe (whether it is a port or a brovaic) until Weds. UGH!!!!

It gets hard not to get antsy and go out of your mind when your kid feels perfectly fine and you are just waiting to get on a schedule. Avery is just mad that he is b/c he feels good. But he did get his new big boy wheelchair today. So at least he was able to get out of the bed and go for a walk which was really nice for both of us.

Also I learned that final diagnosis on the boys. It amazes me on how there are soo many people on this earth and yet Rick and I get together and makes babies with a disease that has only been found in 10, yes 10 people in the WORLD. Turns out Rick and I are both carriers who gave 2 copies to Avery, 1 to Isaiah and Janessa is a carrier. Now are you ready for the name of it..................................

Succinly-CoA Ligase deficiency. It is a Mitochondrial depletion syndrome with Methamolonic Acidemia.

You get all that..... I still have no clue what it means but it is an answer and something that will be useful for Janessa when she gets older.


So this is the phase in the game where we are ALL going crazy being in the hospital. I honestly don't know how other families do it who live here for months on end. My family goes stir crazy with anything beyond a wk. But I am certainly happy that he is not here longer b/c he is sick.