Monday, June 16, 2008

1 in 3,000,000,000

I talked to our neurologist this morning.

Our blood tests reveal that neither Josh or I have the same mutation as Noah.  

Which means that Noah is one of two documented cases of a mutation in this genetic region IN THE WORLD.  (So we affectionately tell him he is 1 in 3 billion...)  Apparently, there is a journal article originating from Japan about a child with similar mutation but it provides precious little insight into Noah's condition, especially his feeding issues (the child in Japan was not seen in the hospital until he/she was 11 months old leading me to believe that the same feeding issues did not exist).  

So, we move forward into uncharted territory.  Literally.

Noah's MRI is being sent to a pediatric neurologist/radiologist in the Netherlands to get her expert opinion on the mysteries that lie within that scan.  We will probably have another MRI done after Noah's first birthday to see what kind of changes have occurred, if any.  I have a feeling Noah might be of interest to the scientific community, in that this mutation appears to be "new" and unresearched.  

There continue to be questions.  The deep, aching kind that make us wrestle with God and makes me weep in the shower.  The practical kind that forces us to vary our perspective on our home, our finances, our car, our time.  The medical kind that makes me thankful for our scientific backgrounds (Josh - chemistry, me - biology) so that we can understand the language the doctors speak.

What is there to do but trust?

"Those who know your name will trust in you, for you, LORD, have never forsaken those who seek you."  Psalm 9:10

5 comments:

Linz said...

Wow. Hard news, yet at the same time maybe good news for the fufture. There IS nothing to do but trust and weep in the shower. That is when God comes. Continuing to ache and pray with you and think of you all often.

Jen(ni)/Fern said...

What a perfect verse.

You're on my mind and in my prayers.

Anonymous said...

Continuing to keep all 3 of you in our prayers.
Cooks

Anonymous said...

Josh and family, This is Johannah's father. I think you know who we are from St. Louis. I have passed this on to Jo. May the Lord continue to bless you with healing for your son and peace to know you are all held in the same loving hands pierced at a cross for you. I am

Yours in Christ,
Mark Bangert

Scott and Dena said...

Yes, he is such a precious unique baby designed by God.

"I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well." Psalm 139:14

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