We made it!

For the last 3 weeks, Noah and I have been in limbo.  We have lived in 3 different houses, slept on a multitude of beds and sofas, stored clothes in laundry baskets, and spent entirely too much time away from Josh.

No more!

Yesterday we arrived in Alabama!

The flight was surprisingly uneventful... Noah seemed to enjoy his first plane ride and I imagine that the majority of the passengers didn't even know there was a baby on board.  The flight from St. Louis to Birmingham was blissfully short... which makes me anticipate many easy trips back to the Lou to visit.  

There is a lot to accomplish at the new house, of course (the pile of stuff in the garage seriously makes me queasy) ... but I am excited to finally begin this chapter in the Lauer family novel.  

Oh me of little faith

Today was a day dominated by doctor appointments.

Noah first visited with the pediatrician for his "well child" check up...I tried not to think about the irony of that label. The big events for this appointment was the ever daunting weight check and the dreaded immunizations. The weight check started the appointment out on a sour note... Noah has lost another 5 ounces and is now at 14 pounds. This is exactly double his birth weight and we are anxious to avoid going any lower. It was definitely an emotional blow to me but I forced myself to remember that our little guy has had a pretty rough last couple of weeks. Noah demonstrated his amazing lung capacity as the doctor examined him and pushed the decibel level even higher when the nurse surprised him with his shots. He calmed down fairly quickly and doesn't seem too much the worse for wear.

We went from the pediatrician's to visit a nurse practioner at office of our pediatric GI doctor. I must admit that I had a lousy attitude about this appointment... I was fairly sure it was going to be a waste of time because we weren't going to see the doctor herself. I couldn't have been more wrong and clearly need to have a little more faith! The nurse practioner, Sara, was amazing. She listened carefully to everything I said and gave us some great information/suggestions on feeding Noah. She suggested we change his formula to one he will be able digest faster... this won't stop the vomiting but will make it so more formula makes it into his small intestine before he vomits, ultimately giving him more calories. Sara also shared with us that she has 8-month old twins at home who were born premature at 26 weeks... one of the twins has had lots of medical issues since birth and is facing some of the same challenges as Noah. It was such a blessing to receive advice from someone who not only has the knowledge base but also the personal experience... she even said I could call her from Alabama if I have more questions!

Overall, it was a good day. We haven't had any throw ups since yesterday morning and tonight was filled with lots of smiles. Small victories but victories none the less.

Only two days until our arrival in Alabama...

Feeding woes...

Noah has had a rough few days. Beginning on Saturday he has been in a cycle of throwing up that we haven't been able to break. It doesn't seem to matter if he eats through his bottle or by g-tube, he just isn't keeping food down. Please join with us in praying that this cycle would end... it is hard on his little body and emotionally exhausting for us (not to mention the laundry we are doing).

Please also pray for wisdom on what course of action we should take with his feeding. There are many options but no clear choice. No one seems to be able to tell me what to do and I feel like everyone expects me to know what is best... which I don't. All I know is that my little boy is not eating enough and it breaks my heart.

I will post later about Noah's baptism... it was wonderful and moving. I managed to hold it together emotionally through the service and the brunch only to fall apart later while watching Noah sleep in my arms that afternoon. Thanks to all who were there in person and in spirit to celebrate this event with us... your love means everything to us.

Bunking at the Holley's

For the past week, while Josh and his parents have been in Alabama and our St. Louis house is being readied for the market, I have been staying at Tom and Debbie Holley's house. This has been a huge blessing in more ways than I can mention and they have loved on Noah as if he was a member of their family. Debbie is even flying down to Alabama with me on Thursday to help me navigate my first plane ride with Noah in tow. Here are a few pics from the week...

Here is Tom hanging out with Noah...

Noah's favorite place at the Holley's is snoozin' in front of the fire.

Reality check.

I bought my plane ticket to Alabama yesterday.

It is a one-way ticket.  

The prayer card

Here is the awesome prayer card that my friend Jodie designed for Noah:

Another fun story...

How amazing is our God?  It has been so cool to see the way He as been confirming our decision to move to Alabama and the way He has been preparing a place for us there.  Here is another story along those lines...

In January, weeks before we knew of Noah's diagnosis, we were eating dinner at Duffy's (a local restaurant) with our pastor and his wife and another couple.  Our waitress came to the table right as we were talking about our impending move to Tuscaloosa.  She overheard what we were saying and immediately jumped in and said, "My husband and I might be moving to Tuscaloosa!"  Josh and I looked at each other in disbelief and began asking her questions.  It turns out that she and her husband are students at Covenant Seminary and had applied to be RUF (Reformed University Fellowship) leaders after graduation.  One of the campuses they were interviewing at was the University of Alabama!  Just a few days before, I had told Josh that I might enjoy volunteering with a campus ministry like RUF.  We exchanged email addresses and parted ways.

Last week, I received an email from her (I am going to leave her nameless in case their move isn't public knowledge yet) saying that she discovered we had mutual friends and they had shared with her about Noah's diagnosis.   When I found out we had friends in common, I got even more excited.  They were interviewing in Tuscaloosa that week... Josh and I both emailed her back wishing them luck... we received a email a few days ago saying they were offered the position and will be moving to T-town in June!  Hooray!

A good day

It was a good day. It seems worthy of celebrating as we have had some not so good days recently.

• Noah ate really well today! We had a little throw up this morning (which seems to be the roughest meal of the day) but his overall intake was good! He tolerated a full 4 ounces through his g-tube this afternoon and then downed a bottle of thickened formula just 4 hours later. Hopefully, this will translate into a restful night of sleep for us all.
• My mom came in town last night and is here for the rest of the week. It is so fun watching her with Noah and it is a huge blessing to have her here for support.
• Noah got his stitches out yesterday and seems to be free of pain from his surgery. He even had a little tummy time this afternoon!
• I got to hang out with my friend Sherri Brock today. She always makes me smile.
• Noah has been smiling a ton yesterday and today. He even has started to laugh a little bit, which is not something we have really seen before. Debbie Holley really knows how to get him to giggle!
• My friend Jodie Allen has designed awesome prayer cards to give to people at Noah's baptism on Sunday. They look great and I know they will remind people to keep praying for our little guy even after we leave St. Louis. (Jodie is super talented... check out her work at Jodified Designs.)

All of those things made the day good, but here is the icing on the cake. Josh called tonight... he had a really long day as he missed his flight from Omaha back to Birmingham this morning. He ended up getting rerouted through St. Louis and Dallas. He was only in St. Louis for about 10 min and then had about a 2 hour layover in Dallas. When he got on the plane, he ended up sitting next to a family from Tuscaloosa. Turns out the man was ... are you ready... a neurologist! He knows the pediatric neurologist we have been referred to in Birmingham and said he would probably be very interested in Noah's diagnosis! He also recommended a few pediatricians to Josh. It also turns out that he and his wife go to 1st Presbyterian Church in Tuscaloosa where they... are you ready... lead the young couples' sunday school class that is filled with couples our age with young children. They told Josh to call them as soon as we are all settled in our new home. AMAZING! Josh felt strongly that God had him miss his flight in Omaha just so he could be on that flight from Dallas to Birmingham and meet this sweet family. God is so good!

I do believe...

Mark 9:17-24

A man in the crowd answered, "Teacher, I brought you my son, who is possessed by a spirit that has robbed him of speech. Whenever it seizes him, it throws him to the ground. He foams at the mouth, gnashes his teeth and becomes rigid. I asked your disciples to drive out the spirit, but they could not."
"O unbelieving generation," Jesus replied, "how long shall I stay with you? How long shall I put up with you? Bring the boy to me."
  So they brought him. When the spirit saw Jesus, it immediately threw the boy into a convulsion. He fell to the ground and rolled around, foaming at the mouth.
Jesus asked the boy's father, "How long has he been like this?"
"From childhood," he answered. "It has often thrown him into fire or water to kill him. But if you can do anything, take pity on us and help us."
"'If you can'?" said Jesus. "Everything is possible for him who believes."
Immediately the boy's father exclaimed, "I do believe; help me overcome my unbelief!"

I have always loved this passage from the Gospel of Mark.  Mostly because I identify so closely with the boy's father... I believe but am still haunted by my own lack of faith.  Our journey with Noah reminds me every day of this tension.  I know the Lord can heal Noah, to regenerate the damaged parts of his brain, to show us a miracle... but at the same time I doubt, wrestle with unbelief, and question God's plan.  The cry of my heart, especially now, continues to be, "I do believe; help me overcome my unbelief!"

Noah has had a pretty good weekend, although he is still vomiting from time to time.  The pain from his surgery seems to have passed and we go to the doctor tomorrow to have his stitches removed.  My mom arrives tomorrow evening, which both Noah and I are very excited about! This will be our last full week in St. Louis!

Some new prayer requests:  Josh's parents headed down to Tuscaloosa today.  For those of you who did not know, we are blessed to have them relocating with us and know they will be an awesome support as we watch Noah grow.  Please pray that they are able to find a place to live quickly and that Eddie can find suitable employment.  They will return to St. Louis for Noah's baptism and then finish moving their stuff the following week.

We're home!

We were discharged from the hospital today earlier than expected.  Noah still has some discomfort from his surgery, but seems to be tolerating feedings through his g-tube fairly well and he has eaten more in the last 24 hours than he has in recent memory!  We will go to the pediatrician on Thursday to find out if our new feeding regimen has resulted in any weight gain.  

A couple of pictures for your enjoyment:

Noah enjoyed a nap with Tavish and Brody the day before his surgery

Noah living the good life... his pump is in the 

background feeding him while he takes a snooze.

Josh just left for the airport... which makes me sad.  I won't see him again until next Friday morning, which feels like an eternity.  One day at a time.

A good friend sent me an encouraging scripture today (thanks Jan!) which I thought I would share:

‘I will see the goodness of the LORD in the land of the living. Wait for the LORD; be strong and take heart and wait for the LORD.’ (Ps. 27: 13-14)

Surgery update

Noah's surgery went well today... he is grumpy because he hasn't been able to eat for the last 12 hours but is in a pretty good mood considering.  The g-tube will allow us to supplement what Noah takes orally so that we can get him back on track with weight gain.  

Josh arrived back in St. Louis safely this morning and will be heading out tomorrow for a big recruiting weekend in Chicago and Omaha.  Prayers for him would be appreciated as he is suffering from a wicked sinus infection that he can't seem to shake.  

Encouraging story from the day:  Our surgeon came in to talk to us before taking Noah into surgery and explained again the procedure that he would be performing.  After finishing, he looked at us and said, "Would you like me to pray before we take Noah?"  Josh and I looked at each other and said yes in unison.  God is so good. 

In my mind's eye...

I woke up about an hour ago to give Noah what our friends the Cobbs refer to as a "dream feed."  He can't have anything except clear liquids after midnight and I wanted him to have one last meal before that.  He hardly woke up and fell back asleep readily... but I am keeping watch a little longer to make sure he keeps it down.

While I was lying with him on the sofa, I began to pray for his little digestive system to keep the food that Noah had just eaten.  God blessed me with two powerful images that I thought I would share to encourage those who are walking with us on this journey.

Image #1

Noah's condition, leukodystrophy, essentially causes holes in the white matter of his brain.  We suspect that some of his feeding issues are a result of a breakdown in his central nervous system's ability to coordinate his digestive system.  As I prayed against him throwing up, I had an image of the Holy Spirit filling all the little holes in Noah's brain and making it whole again!  God knows Noah's brain so perfectly that I trust He can make it work if He chooses... 

Image #2

Have you seen the Verizon cell phone ads with the "Can you hear me now?" guy?  They show a Verizon cell phone user followed around by a huge group of people representing the network of service that you get with your contract.   As I snuggled with Noah on the couch, I thought about the amazing number of people across the country and even the world who are praying for our little boy.  The image came to mind of Noah with me and Josh standing behind him... then behind us was a huge crowd of people representing our "network" of those lifting us up in prayer.  Seems a little cheesy when I write it out, but it was a powerful reminder to me of God's faithfulness in raising up the body of Christ to intercede on Noah's behalf.  How humbling.

I should be sleeping

I should be sleeping because Noah is sleeping.  My mind, however, is not quite ready to call it a day so I am trying to wind down by updating the blog.

I am excited because Josh comes home tomorrow.  He will only be in St. Louis for less than 36 hours, but I'm not complaining.  I'm always stronger when he's here.

A prayer request:  Noah is having surgery tomorrow at noon to have a g-tube placed in his stomach.  This will allow us to control his intake a little more and hopefully encourage him to gain weight.  He will be admitted overnight so that we can learn how to use the g-tube and make sure there aren't any complications.  Dr. Coln is the surgeon, if you are interested in praying for him by name.  

A huge praise is that Noah's pH study indicated that his reflux is not severe.  This means that we do not have to do a second surgery to tighten the valve from his esophagus to stomach!  Definitely an answered prayer.

A praise on a different note is that Josh helped Alabama seal the deal with a big time recruit... she gave her verbal commitment yesterday and will be playing for the Crimson Tide in 2009.  A great way for Josh to start his new job.

Another prayer request is for our Alabama insurance.  Noah's diagnosis makes him fall into a category of "pre-existing condition" which means they could deny us coverage for up to 6 months.  Obviously, that would be bad.  Josh seems to think that as long as we have proof that Noah was covered by insurance in St. Louis we should be okay.  We got a document in the mail yesterday that seems to fit that description, so hopefully there won't be any gap in Noah's coverage.

Thanks again for all the prayers that I know are being said for Noah... it means the world to us.

Late Night Prayer Request

Josh and I have been blessed by the sheer number of people who are praying for us and for Noah.  I wish there was some way to track the people and the churches who we have indirectly and directly been told are praying for our family...

So as I sit here bleary-eyed with my little boy, I ask this amazingly vast prayer network to pray for a specific request:

Please pray that Noah stops throwing up. 

 (For you moms out there, I am not referring to that charming little dribble of milk that sneaks out from time to time.  I'm talking the whole kit and caboodle.)

It is hard for me to not break down sobbing when it happens...I have struggled for so long with Noah's feeding issues that it just devastates me emotionally.  Not to mention the mess it causes... Noah and I both have new pajamas on now and Chris & Eddie's leather couch has been wiped down yet again.  

So, as one of our friends said, "Let's flood heaven with our prayers."  

 

First hospital stay... Check!

Where to begin?

I began today in an unusual fashion... rested! A very sweet friend came to the hospital yesterday and ended up staying for over 24 hours, including a period of about 8 hours during which I went home and slept and showered. A true blessing.

Noah's day began a little earlier than mine when he sneezed out the wire that was measuring the acidity levels in his esophagus! Fortunately, the meter had been recording for long enough that the doctor was able to get the results she needed. And the results turned out to be an answered prayer as Noah's reflux is not severe enough to warrant a second surgery! Hooray!

After an EEG, I met with Noah's neurologist who filled us in on the next round of tests. After Noah had his blood drawn, we waited to meet with the pediatric GI to be discharged. We waited. And waited. And waited. Apparently there had been a communication break down between the doctor and the nurses on our floor... 4.5 hours later she finally arrived and gave us the information we needed for our next visit to the hospital on Thursday.

Here is the pic of Noah and his favorite bug I promised... I couldn't quite get him to smile, but it had been a long day.

Another really long day...

I am writing from the cafeteria at St. John's hospital... forcing myself to eat while a sweet friend keeps watch over Noah.  My body and my mind are exhausted.

Noah had several tests done today... but the low point came long before any of the tests.  The nurses had an extremely difficult time getting in the IV and eventually had to use a vein in Noah's adorable little head.  Mercifully, Josh's mom encouraged me to leave the room while they were making their attempts so I didn't watch them stick him repeatedly.  When I came back into the room, he was as mad as I've ever seen him, but he settled down once he was snug in my arms.  

Amazingly, Noah has been a pretty happy camper throughout the day.  He has been cooing and playing with his favorite bug (picture to follow later) and has slept pretty well in spite of the chaos going on around him.  We were moved out of the pediatric ICU this afternoon and into a shared room... not the ideal situation but one in which we will have to push through.  

Josh and I continue to remind each other that we must take this one day at a time ... 

Prayer Requests for the Week

We are bracing for a long week in the Lauer family. Josh flies back to Alabama tonight and won't be back until Thursday morning. Noah will be admitted to the hospital tomorrow to begin one of many expected rounds of testing. Many have asked us how they can be praying...

1. Praise God that we have found a rental house in Tuscaloosa that exceeds our expectations. This allows us to move forward with our relocation in the time frame we had planned.

2. Safe travel for Josh as he returns to Alabama tonight and a productive few days for him at work. He will be establishing our insurance in Alabama, so we pray that there will be no snags involved in that process.

3. Courage and strength for me as I am without Josh for the first part of the week.

4. That Noah's reflux would be only be mild so that we will not have to have an additional surgery beyond the insertion of the gastrointestinal tube. This probably is what is weighing heaviest on my heart right now. The severity of his reflux will be measured during his hospital stay Monday - Tuesday.

5. Work on the house would progress quickly and that our house would sell quickly.

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.