Noah has another MRI tomorrow at 11 am. They want to run a MR spectroscopy (an additional reading done using MRI). During his first MR Spec there was evidence of an elevated level of lipids (see post below), which could be evidence that Noah is storing fatty acids in his body and not breaking them down. This could explain why the mice died – he is building up toxins in his body. For whatever reason, during the second MRI they didn’t do the MRS.
Even though we are frustrated that we are now just finding out about the results of this test (not surprising that there was a breakdown in communication as Noah’s had about 20+ Dr’s on his case since he arrived), we are happy that our favorite neurologist is really acting as an advocate for Noah. We asked him to be his primary Dr about 4 weeks ago, as we did not want to see the just another Dr who just happens to be attending that particular week. We wanted a leader – someone to be in charge. I’m confident that Dr. Brian is pushing hard to figure out what is going on and God will reveal.
Please pray that the second MRS will lead to additional results.
I can’t even imagine how frustrated you feel at times, but its so obvious that God’s grace is with you. I’m still praying!
GO!! DR. BRIAN!!!
God bless you all. Praying for you…and then praying some more…
Jason and Ade,
I will be praying for his MRI tomorrow. I am really frustrated for you guys but also relieved that it was actually finally told to you. May God continually hold you guys up with his strength and spirit. I LOVE and miss you guys.
I am so happy you were able to go outside with Noah. I am sure it is something few patients get to experience. Love and prayers always,
P.S. Ade your beauty (inside and out!) far outshines the hairloss you are experiencing 🙂
Praying for Noah and your family daily/nightly.
A small group here at the International House of Prayer-Kansas City are joining with me during the Night Watch.
Love In Christ-
(I met you at Chris & Terra’s wedding. I sang in the wedding)
Blessings. . .
Thanks for the posts.
I’m glad to see Noah’s getting out. He’s definitely the rugged outdoors type… you just don’t know it yet.
He’s also very comfortable with his masculinity… considering those shades look more like Mom’s style than his… I’m sure they served the purpose very well, though.
your mother KNEW to pray that the hidden things would be revealed! oh that is the gooood gooood news! (ALTHOUGH in my heart i’m seriously wanting to kick some butt WITH you!) 😉 but thank You Lord for showing us how to pray – thank you for revealing what was hidden… thank you that YOU are able to heal ALL hidden things regarding noah’s health!
You guys continue to amaze me. Thanks again for your example of faith and grace!
And it’s good to see that Noah is now fashionably fitting in with the rest of the “big glasses” gang.
You may want to check into ALD (Adrenoleukodystrophy). “ALD accumulates high levels of saturated, very long chain fatty acids (VLCFA) in the brain and adrenal cortex because they do not produce the enzyme that breaks down these fatty acids in the normal manner.” This disease is very very rare and found most commonly in young boys some of the symptoms include retinal degeneration, hypotonia both of which I am almost positive Noah has had. I hope this leads you somewhere! =)
Jason and Ade,
Much love and prayers for all of you. We also pray for strength and wisdom. We love you guys so much.
definitely praying for you guys and the latest (not so latest) developments.
Ade and Jason…you guys are such amazing parents. That little guy is so loved and so blessed to have parents like you. In the midst of the pain you still manage to bring life and joy to his world. We are praying for your stength, endurance and healing. Much love…Mauri and Rob