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!
WOW. I would call right now, but you’re cuddling. I have a great remedy for your hair loss, I’ll bring it up.
I thank God that he measures us by our hearts, not by our minds.
A & J –
I wish I knew what all of that meant in laymen’s terms, but I’ll just pray that whatever this means that it will be a key to break this mystery that is your reality once and for all.
Thanks for the update. I hope you’ll get some action on pursuing the fatty acid issue. This seems consistent with what us “lay folks” have been thinking.
Thanks for keeping us all posted – literally. You, Jason, Noah and all of your family and care givers remain in my prayers.
Ever wonder why they call it “Practicing Medicine”?
The scriptures say that the man without the Spirit does not understand the things of the Spirit, but the man with the Spirit is able to judge all things…the natural things and the things of the Spirit….I have been praying for God to send a born-again, Spirit-filled doctor who can understand what God wants revealed for Noah…..God is faithful, and He will do it.
You know it sounds like there are too many chiefs and not enough indians pursuing Noah’s case.