Thank you, everyone, for your prayers prior to today and today, too, of course. This morning we had the Care Conference. It went well. We started it out in prayer which is always good! Jason’s brother, Adam, is a ND/Acupuncturist and was able to be with us as an advocate for us as family but also parents seeking to integrate medicine for their child. Everyone is on board with every treatment we want to do with Noah as far as integrating several therapies. I think because the doctors don’t have an answer or a cure for the unknown, they want to support us in knowing that we are doing all that we can do to care for Noah. The reality is that Noah NEEDS the ventilator, it is his life support…therefore, until we can go home, we NEED to be here for his respiratory support. It was a collaborative effort today and for that we are grateful. We feel supported.
Anyway, some of the labs that came back, including Noah’s samples and my own, show the antigen for Aspergillus (a fungus) along with the antigen for Borellia Burgodorfi. In my plasma sample they found elevated levels of Babesia along with a few other buggers that I don’t know the name of off hand. All of this to say…our docs on the outside would say that during the 2nd trimester when the blood/brain barrier is not protected, the above bacteria were able to penetrate the cell walls within Noah’s brain, causing a metabolic inefficiency, showing itself as a genetic disorder. The docs on the inside of these walls would say that Noah was born with a rare genetic disorder, an inability to process or metabolize VLCFA (very long chain fatty acids). I asked the docs if it was a matter of semantics, meaning, is it possible that the two are the same? That the “bugs” penetrated the cell wall, attacking the peroxisomes which contain the enzymes that break down the VLCFA’s. He said that that was a possibility.
All of this to say, due to the galactomannan Aspergillus test that was performed at UT San Antonio, we have begun Diflucan at a low dose and will increase it over time. Everyone is also on board with him having supplements to support his systems. We are waiting on several of those right now. We are trying to track down some energy machines that can possibly help on a cellular level,, neutralizing bacteria and fungus int eh body, relating to our body on a bio/physics approach.
Anyway, that is the logistical side of today, but I just wanted to share an encouragement that came my way last night/today…I have a sweet friend that has a pretty tender one on one with God. She has been seeking Him, and finding Him, in her life in many creative ways. Well, one way God speaks to her is through dreams. I hadn’t talked to her in a while, but God told me last night that she was going to have a dream and call to encourage me with it. This morning while I was in the shower, she tried my cell to no avail. After I got out, the home line was ringing and it was my friend calling to tell me that she had the sweetest dream about Noah and that she was smiling in it and didn’t want to wake up out of it. God is Good.
I leave in the morning for KC. Please pray for Jason, Em, my folks, Jason’s brother and his wife, Auntie Ro, and baby Xavier, my sister, Dana, and our friends Jason and Becky who will all be coordinating care of Noah while I am away. There will be a lot of shuffling of schedules, I do realize the sacrifice and I am so grateful for the opportunity to be able to leave town to celebrate a most exciting new chapter in my dear friend, Molly’s life! I pray for strength for everyone! Any updates will come from Jason or my mom. Love to you all! Ade xoxox