One Day at a Time…

I hate to even write anything…it seems to always change. But I know you are praying; some of you worrying so I want to share the latest.

I have to say this has been a very, very long journey with so many details and I will take the time to share all the details….soon.

Today-I just wanted to let you know that his Methylmalonic acid level increased, his Lactic Acid level quadrupled and he went further into a catabolic state.  With all of that, coupled with the other symptoms (namely the Acute Life Threatening Events, liver enzymes and severe neutropenia) the metabolic doctor is pursuing Methylmalonic Acidemia.

We will have more testing done over the next couple of days and then meet with the metabolic doctor.

Caleb has slipped on the growth chart despite consuming more than 30 oz. of food in 12 hour periods.

His final labs are tomorrow and then we can put him on the necessary (protein free) formula and then wait some more…

And Caleb, my love…you just keep livin’ up to your name, sweetheart.  Numbers 14:24.

 

 

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