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



18 Responses

  1. Our God is so wonderful in how He comforts us, and uses us to comfort others. I’m thankful for the progress the labs have let you make with Noah, and I’m super glad that he’s getting some new treatments that will help build him back up. πŸ™‚

    Still praying, and I have a question for my medical curiosity. Are the inside docs thinking that Noah has a form of ALD?

  2. Hi guys! I was sent the link to Noah’s blog months ago by Angie Umfleet and have been following your family ever since. My husband and I pray for Noah and talk about him regularly. Isn’t it funny how you can never have met someone but when you share the link of Jesus, somehow you automatically love them like family. Your words and faith have inspired me and strenghted my own faith over and over again. I am a also a pediatric speech-language pathologist. I spend all day everyday with families and little ones with special needs and have even been able to share your blog as a witnessing tool. It’s amazing to me how many different ways God can use a little man in Colorado to accomplish so many things while resting in His Father’s arms. Know that Cape Girardeau, MO has been touched by your sweet baby and the thoughts and words you have shared have strengthened my own walk. As I was praying for you tonight in the shower (where I always seem to have the best conversations with God πŸ™‚ this song was on my heart and I felt the need to finally introduce myself after months of following you and share it with you. Though I love our modern worship, sometimes the old hymns say it like none other can…It Is Well with My Soul

    When peace, like a river,
    attendeth my way,
    When sorrows like sea billows roll;
    Whatever my lot,
    Thou hast taught me to say,
    β€œIt is well, it is well with my soul”

    It is well, it is well with my soul

    Though Satan should buffet,
    though trials should come,
    Let this blessed assurance control,
    That Christ has regarded
    my helpless estate,
    And hath shed His own blood for my soul.

    My sin, oh the bliss
    of this glorious thought!
    My sin, not in part but the whole,
    Is nailed to the cross,
    and I bear it no more,
    Praise the Lord, praise the Lord, O my soul!

    And Lord haste the day
    when the faith shall be sight,
    The clouds be rolled back as a scroll;
    The trump shall resound,
    and the Lord shall descend,
    Even so, it is well with my soul.

  3. Hi Adrienne,
    My names Liz, and I heard about Noah and have been praying for him for awhile now. I’ve been reading everything you’ve been posting, and I wanted to tell you about a supplemental juice I’m taking. It’s helped with my rheumatoid arthritis..and it supports the immune system…so I just wanted to tell you about it in case it may help. I’ve read that it can be used on people of all ages, even babies, because its all fruit derived. here’s a link about it from the american cancer society:

    Okay, well I will continue to pray. Email me if you need more info about this.
    God Bless You Guys,
    Liz Sadosky

  4. 2nd time i’ve heard of mangosteen in 2 days! another friend has a son with ADD and it’s been quite helpful. amazing how many areas it touches and can be beneficial in.

    brandi’s song brought me to tears. πŸ™‚ i LOVE that old song.

  5. Prayer can be like incense, rising ever higher and higher, or it can be like a low earth-mist clinging to the ground, never once soaring.

    The Eye that sees all, the Ear that hears all, knows every cry.

    But the prayer of real faith is the prayer of Joy, that sees and knows the heart of Love it rises to greet,and that is so sure of a glad response.
    From a devotioinal by A.J. Russell

  6. Dear sweet sister, I’ve been reading your updates and praying for you all for about a week, ever since I discovered the link on Haszblahs blog (from my daughter who’s an intern at HA.) Anyway, I want to encourage you to be sure that there is no fluoride in Noah’s diet (perhaps he’s on a formula? and, all tap water in the US has F added). Virtually all MDs are completely ignorant of its damage to the immune system, intestines, etc, because they’ve been “fed the party line” all their lives. It’s extremely toxic, not an essential element, not found or needed in the human body, and is likely far more dangerous to a tiny one whose health is already compromised. I researched it 18 years ago, compiled a 14-p paper with a couple hundred footnotes, and debated the CO Chief of Pub Health. The next year every medical book documenting its damage, which I had used referenced in my footnotes, mysteriously disappeared from every library in the entire state of Colorado. Praying with you for a miracle. Harriet

  7. Something keeps telling me over and over again since I found out about this disorder ALD (Adrenoleukodystrophy- his symptoms are almost indentical to Noah’s. Researching it more wouldn’t hurt. Its a genetic disorder that 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. I hope this gets you somewhere!

  8. we love you guys!!!! Your are both prayer warriors! Noah is in many prayer requests. God is soo good and believe the impossible. In Him, Cindy and Dave

  9. hey, guys! We are praying for you and KNOW that God will be leading you to clarity re: condition and future. Ade, I hope that you are having a wonderful time at the wedding! Please call if you need anything!

    Ry, Amanda, Isaac and Brenna

  10. Hi –
    Just wanted to let you know I’ve been reading your blog, thanks to Beth Hasz. Your attitude is amazing. I saw in your profile that you love the book Peace Like A River. I’m right in the middle of it, and I love his writing. I especially love Swede.

    Welp, that’s all. Another person is praying for your boy in Virginia.

  11. Hello gang! I just thought that I would drop by and see how things were going for you all these days. Know that you are in my thoughts and prayers and I will do anything within my power to help out…so just let me know.
    Take care! Tony

  12. Continuing to pray for peace for your family, stregth for Noah, and wisdom for the doctors, and trusting that You are safe in the grip of one who loves you more than anyone else.

  13. Jason, (Adrienne, Jason knows me.)
    I have been praying for Noah and have really felt that God was going to deliver him. Last night I was watching the 700 Club (which I rarely do) and Pat Robertson had a Word of Knowledge that someone was being healed of a fungus in their body. I claimed that for Noah and am Praising God for his healing.
    Nancy O.

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