Time with good friends

We were able to spend some time with our small group tonight... much needed after a long week. One part of the evening turned into an impromptu photo shoot of our small group babies... (from left to right:  Sophia Scott, AJ Snyder, Noah Lauer, Micah Cobb)
Josh was also able to spend some quality time hanging with AJ while our friend Charity was reading a book with Noah.

An invitation

In light of all that has happened this week, we have decided that it is very important to us to have Noah baptized before we leave St. Louis. His dedication will take place on February 24th during the first service (9:00am) at Greentree Community Church. Please join us if you can as we celebrate Noah's precious little life.

Be Encouraged

Whenever I feel myself sliding down into despair, I try to remind myself of the ways that we have already seen God work in the midst of our heartache.  Recording them here allows me remember when worries crowd them out of my mind and perhaps may serve as an encouragement to those who are walking this path with us...

1.  When our pediatrician recommended that I take Noah to an eye doctor, she gave me a list of three names to choose from.  Using a very un-scientific process, I picked a name from the list.  Not only was this eye doctor able to see Noah within a few days, his office manager knew Josh because her daughter played volleyball in the St. Louis area.  When the eye doctor made his concerns about Noah known, she was responsible for the speed with which we were able to get an MRI scheduled and ensured that we would get results quickly.

2.  The house we are renting is owned by the administrative assistant to the volleyball program at Alabama.  She and her husband were having a difficult time selling and decided to rent to us in the meantime.  The length of the lease, the monthly cost, the number of bedrooms, and location were all exactly what we had been hoping and praying for.  Aside from the fact that it is on "Championship Drive" -- how perfect for the new volleyball recruiting coordinator and his family!

3.  Rise School of Tuscaloosa is ranked one of the best in the country for kids with disabilities aged birth to five.  It is located on the University of Alabama campus.

4.  Noah's condition will most likely prevent me from going back to teaching in the fall.  Josh's new position in Alabama provides us with the financial stability for me to stay home... if we were remaining in St. Louis, I would have to go back to work.  

5.  While we have had some differences with our pediatrician, her 30 years of experience is allowing us to get connected with some of the best specialists in the area.  When she calls, they answer the phone and seem to be very willing to help.

6.  Birmingham is home to a well-respected children's hospital that is associated with the University of Alabama Medical School.  Josh's affiliation with the university will hopefully ensure that any treatment Noah may need in Birmingham will be covered by our university insurance.  Also, our pediatric neurologist here in St. Louis knows a pediatric neurologist in Birmingham that we will be able to transfer Noah's care to once we have officially relocated.

7.  We have already received emails from people in Tuscaloosa supporting us on this journey with Noah... most are associated with UA but some are total strangers who have heard our story through the grapevine.  

I'm sure I will have more to add as time goes on.  Be encouraged.

One step at a time

Here is the first of many answered prayers... we have a house to rent in Tuscaloosa!   The location is great - close to the interstate for our many expected trips to Birmingham for Josh's recruiting travel and Noah's medical care, great size with a spare bedroom for visitors, & within our budget!   

The longest day of our lives

Without any doubt, I can say that yesterday was the longest day of our lives.

It began with me (Deb) picking up Josh from the airport after he flew back from Alabama. We headed back to Josh's parent's house to pick up Noah and head out to St. Luke's hospital for Noah's MRI.

Noah's MRI took around 3 hours from start to finish. (One of my most precious memories will be of a sweet nurse's aide who took it upon herself to check on Noah in recovery and report back to us. She referred to Noah as "Little Noah Man" over and over again which made me smile.) The technician gave a copy of the scan to us on CD to hand deliver to the neurologist after the MRI.

The neurologist then had the unpleasant task of telling us the worst news we could possibly imagine. (He is probably one of the most gracious doctors I have ever met...he spent probably an hour and a half with us, long after his office actually closed.)

Here is what we know:

1) Noah has a rare genetic disorder that is causing a degeneration of the white matter in his brain.

2) The disorder is likely the cause of the feeding issues he has been having as well as the abnormal eye and head movements and slowed development.

3) The disorder is in a category known as "leukodystrophies" but we do not know yet what specific type of leukodystrophy is affecting Noah.

4) Noah will likely be admitted to the hospital sometime next week to undergo a battery of tests in an attempt to identify the disorder. During this hospital stay, we may have a feeding tube inserted so that we can better control his calorie intake and encourage weight gain.

5) There is no treatment for this condition, only a management of the symptoms as they develop. Life expectancy cannot be predicted at this time but it is unlikely to exceed 10 years.

We are heartbroken. But we continue to place our hope and trust in the God who knows Noah's inmost parts.

Joshua 1:9 "Have I not commanded you? Be strong and courageous. Do not be terrified; do not be discouraged, for the LORD your God will be with you wherever you go."

A Psalm for Noah

PSALM 139
O LORD, you have searched me
and you know me.
You know when I sit and when I rise;
you perceive my thoughts from afar.

You discern my going out and my lying down;
you are familiar with all my ways.

Before a word is on my tongue
you know it completely, O LORD.

You hem me in—behind and before;
you have laid your hand upon me.

Such knowledge is too wonderful for me,
too lofty for me to attain.

Where can I go from your Spirit?
Where can I flee from your presence?

If I go up to the heavens, you are there;
if I make my bed in the depths, you are there.

If I rise on the wings of the dawn,
if I settle on the far side of the sea,

even there your hand will guide me,
your right hand will hold me fast.

If I say, "Surely the darkness will hide me
and the light become night around me,"

even the darkness will not be dark to you;
the night will shine like the day,
for darkness is as light to you.

For you created my inmost being;
you knit me together in my mother's womb.

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

My frame was not hidden from you
when I was made in the secret place.
When I was woven together in the depths of the earth,

your eyes saw my unformed body.
All the days ordained for me
were written in your book
before one of them came to be.

How precious to me are your thoughts, O God!
How vast is the sum of them!

Were I to count them,
they would outnumber the grains of sand.
When I awake,
I am still with you.

...

Search me, O God, and know my heart;
test me and know my anxious thoughts.

See if there is any offensive way in me,
and lead me in the way everlasting.