What time I am afraid

What time I am afraid, I will trust in Thee; In God I will praise his word, in God I have put my trust; I will not fear what flesh can do unto me. Thy vows are upon me, O God: I will render praises unto thee. For thou hast delivered my soul from death: wilt not thou deliver my feet from falling, that I may walk before God in the light of the living? (from Psalm 56, KJV)

I received a call from the neurologist today. Amelia has been formally diagnosed with Acute Disseminated Encephalomyelitis (ADEM), a form of leukodystrophy. She may also have Vanishing White Matter Disease (VWM), another much more severe form of leukodystrophy. The diagnosis of this, or exclusion of it as a potential diagnosis, will be made over time after one or more additional MRIs have been taken. I think it is reasonable that all of you who are praying for Amelia read these two websites to get an idea of what we are facing in the next weeks or months as a family.

When my anxious thoughts multiply within me, Your consolations delight my soul. Psalm 94:19

There are a host of other diseases that Amelia will also be tested for as the weeks go by. I am uncertain when these tests will occur, as some cannot be done while she is on steroids as she is now. Some of the genetic tests may be done as soon as tomorrow. I will leave it up to each of you whether or not you want to follow these links. Some of these diseases are horrific and reading about them may do little to help you and a lot to worry you. Please use your own judgment, and trust, as we are trying to, that God has Amelia in His powerful hands and will help us, when the time is right, to face the entirity of her diagnosis. That being said, the other diagnoses that are now being considered are pediatric multiple sclerosis (P-MS), adrenoleukodystrophy (ALD), Canavan's disease (CD), Alexander disease, metachromatic leukodystrophy (MLD), and Megalencephalic Leukoencephalopathy with subcortical Cysts (MLC).

Now we know that if the earthly tent we live in is destroyed, we have a building from God, an eternal house in heaven, not built by human hands. Meanwhile we groan, longing to be clothed with our heavenly dwelling, because when we are clothed, we will not be found naked. For while we are in this tent, we groan and are burdened, because we do not wish to be unclothed but to be clothed with our heavenly dwelling, so that what is mortal may be swallowed up by life. Now it is God who has made us for this very purpose and has given us the Spirit as a deposit, guaranteeing what is to come. Therefore we are always confident and know that as long as we are at home in the body we are away from the Lord. We live by faith, not by sight. (from II Corinthians 5)

We are still awaiting the Lyme disease and Epstein-Barr (mononucleosis) virus tests. The equine virus and other tick-borne disease tests have come back negative.

On a pregnancy front, I continue to have symptoms of pregnancy (morning sickness, fatigue, emotional wreck - hmmm, is that the pregnancy, or something else??). My hormone levels rose slightly, indicating that my ectopic pregnancy is continuing at this point. I continue to have bouts of severe (albeit short-lived) abdominal pain and bleeding. The doctor I am currently seeing is unwilling to treat me beyond monitoring my hormone levels; she refuses to do an ultrasound or check my hemoglobin, and will not give me anything for the pain. I need to switch doctors, but haven't had time or emotional energy to search out other options. A friend recommended I look into the local Catholic hospital, which will likely be more supportive of my decision to refuse abortion. I will be looking into how our insurance benefits apply in the next week. Please keep my safety and the life of this amazing baby in your prayers, along with our sanity, our peace of mind, and - foremost - the preservation of the life and function of our precious Amelia Irene.

Simply trusting every day,
Trusting through a stormy way;
Even when my faith is small,
Trusting Jesus, that is all.

Trusting as the moments fly,
Trusting as the days go by;
Trusting Him whate’er befall,
Trusting Jesus, that is all.

Singing if my way is clear,
Praying if the path be drear;
If in danger for Him call;
Trusting Jesus, that is all.
~Trusting Jesus, Stites & Sankey, 1876

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