Hi people!
I have just learned information TODAY that was actually in the docs hands on August 3rd, from his first MRI and it is quite KEY...WHY No one pursued this with diligence, I'LL FIND OUT...I don't know why today is the day we are hearing of it...Please pray for us during this time. It doesn't do me any good to kick in walls or fly off in a rage, but SERIOUSLY, the medical industry is experiencing serious GRACE because if God weren't in charge of this and I were, some serious butt kicking would be occurring! (Docs should be praising God and thanking Him for mercy now...)

Noah will have a follow up MRI this week to see if this finding is still there, better or worse. We'll keep you abreast.

Here's the info if you want to copy it to a doc for review (the bold sentence the KEY information):
MR spectroscopy: Short echo MR spectroscopy was performed in the left basal ganglia, left parietal white matter, and in the midline posterior to evaluate the cortex. There is elevation of the lipid peak consistent with stored fatty acids which can be seen with peroxisomal disorders. However, there is no reduced NAA or elevated choline to suggest neuronal degeneration or abnormal myelination.

Noah's muscle and nerve biopsy findings are in Sydney, Australia, with a Professor Robert Ouvier and his team for analysis. He's the leading guy regarding peripheral neuropathies in children.

I don't want to write any more about it...I really just want to snuggle with Noah and enjoy his company. One of his nurses from the PICU used to say "he's just a nice person". He melts my heart!