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

Unbelievable

As some of you know, I graduated from high school in Iowa City, Iowa. My parents moved to Michigan shortly after I graduated from college, so I don't go back very often, but the town still holds a special place in my heart. I also have many friends who still live in the area.

All of the rain this spring has resulted in massive flooding in many cities in Iowa, including Iowa City. The extent of the flooding is unreal.  I found this video on the Des Moines Register website and thought I would share it here. Please join me in praying for all those affected by this flooding... I don't think the Iowa River is expected to crest until late Monday or early Tuesday.

(Okay... I had to remove the video because the music drove me crazy anytime I went to update the blog or read comments... if you want to see it, click here)

Oh, the horror.

Eye surgery

         +

Digestive issues

         +

Teething

         =

Very little sleep

Our trip in pictures

(The video wasn't working yesterday... but I think I fixed the bug so it should work now.)

Here is a 5 minute slide show of our trip to New Haven... I tried to make it snazzier in iMovie but my computer was acting up. So this is the un-snazzy version. Enjoy.

Degoogled.

We are at home recovering from a very long day.

Noah has shaken off the grogginess from the sedation and lets us know from time to time that his eyes hurt.  They are definitely raw looking but not nearly as crossed.  We are slowing trying to reintroduce his stomach to food and hoping the anesthesia hasn't further confused his digestive system.  

The night ahead brings the next challenge as Noah seems somewhat attached to having us nearby.  He slept a lot this afternoon but hopefully will be exhausted enough to sleep through the night as well.  'Cause mom and dad are tired, too!

Out of surgery.

We haven't seen him yet, but the eye doctor came in and said the procedure was finished and all went well.