Why?

Why, oh why, doesn't he sleep like this at night?????

One month anniversary

Noah and I have been in Tuscaloosa for exactly one month today!

Alabama-isms #3

TRASH vs. GARBAGE 

In St. Louis, these two words are synonymous.

In Tuscaloosa, these are two different things and have separate days for pick-up:

• TRASH = All tree and lawn trimmings, leaves, pine straw, trash that has been burned, rocks, bricks, and demolition type waste, generated by family units. Paper, cartons, cardboard, refuse, garbage, litter, rubbish, sludge, liquids, toxic or hazardous waste will not be accepted for trash collection.

•   GARBAGE = Putrescible animal and vegetable waste resulting from the handling, preparation, cooking, and consumption of food, including waste from markets, storage facilities, handling and the sale of produce products, and in general from food for human consumption, and non-putrescribe waste matter, such as glass, plastic, paper, cartons, boxes, and cardboard.
  

A special visitor

Noah had a very special visitor last night... Uncle Sholi came to visit!  

Mike Sholiton is a great friend who played football at Wash U with Josh. We are fortunate that Mike's job brings him into the area every once in a while which gives us a chance to see him. Noah had a great time hanging out with him!

In other Noah news, I put together his high chair today and he seems to like it.  It is similar to one he uses at Josh's parents house.  This is slowly moving us toward attempting solid foods and the spoon again... if he can figure out the spoon it will open up a whole new world of ways to get more calories into him!
Also, by way of a mini-milestone, I've noticed that Noah is beginning to play with some of his toys with both hands at the same time!  This may not seem like a big deal... but we like to celebrate any and all of his accomplishments!  

Return of the Button!

After another trek to Birmingham, Noah has a new button!

I was unsure if they were going to be able to put a button in today based on ER doc told us on Thursday.  However, I wasn't a big fan of the foley tube for lots of reasons, so I was absolutely thrilled when Dr. Georgeson came in and popped a new button (albeit slightly smaller) into Noah's belly!  

N-Jack takes control of his paci

Last week I noticed that Noah had his thumb inside his pacifier... I thought it might be a fluke but started noticing it more and more often!  Once he gets his thumb inside, he is quite good at navigating the paci to his mouth.  What is really funny is that he gets his thumb stuck ... when I pull the paci off his thumb, the paci turns inside out!

I captured these pictures on the changing table the other day... in the first you can see that his thumb is inside the pacifier.  The second shows him moving it to his mouth!

Spring comes to Alabama

These are the trees lining a street close to ours... 

they have been blooming for at least a week now!

I found this little guy scurrying along on the side of our house.  

I'm sure there are lizards in Missouri, but I never saw them!  

A prayer request

PLEASE, please pray that Noah starts sleeping better at night... 

Noah's big adventure...sort of

As much as I hoped for it to be a smooth and quiet weekend while Josh is Baltimore, it wasn't meant to be.

Shortly after I posted on the blog yesterday morning, Noah's g-tube button came out.  I guess my instincts were right about it being a little loose!  I knew this could happen, but the timing of it was awful.  His surgery was so recent (2/14) that there was a real danger of the hole closing and I had none of the means or instruction to replace the button.  So, it was into the car with Josh's mom to the emergency room at Children's Hospital in Birmingham.  

Five hours later we only had a temporary fix.  The hole had closed enough during our trek to Birmingham (it is about an hour away) that they couldn't simply put in a new button.  Instead, they inserted a foley tube with a slightly smaller diameter and taped it in place.  We will have to use this to stretch the hole a little bit and see what the pediatric surgeon says at our appointment on Monday.  This is less than ideal as the foley is long and easy for Noah to grab.  It also can slide further into his stomach and the balloon at the inside end could block his esophagus.  Needless to say, I will be a little on edge until the button is back in.  

In the midst of all of this, they had to use some contrast solution under an X-ray to see if the foley tube was in the correct position.  Noah hadn't had anything to eat since 7am that morning and his stomach was not a fan of them injecting this nasty stuff into him.  So he proceeded to heave it all up... no fun for anyone involved.  We returned home, exhausted.

Today has been much, much brighter.  We went to our first appointment this morning with our new pediatrician, Dr. Evans.  I loved her and Noah must have as well because he flirted with her like crazy!  I am excited to have this piece of the puzzle in place.

I read this passage in my devotional a few weeks ago, but I keep coming back to it because it so clearly applies to my life right now and is what I am clinging to this weekend:

Let Me help you through this day.  The challenges you face are far too great for you to handle alone.  You are keenly aware of your helplessness in the scheme of events you face.  The awareness opens up a choice to doggedly go it alone or to walk with Me in humble steps of dependence.  Actually, this choice is continually before you, but difficulties highlight the decision-making process.  So, consider it all joy whenever you are enveloped in various trials.  These are gifts from Me, reminding you to rely on Me alone.

(James 1:2-3)

Flying solo

Josh left early this morning for a recruiting trip to Baltimore.  We are thankful he wasn't scheduled to recruit in Atlanta as the tornado that went through the downtown area damaged the venue where the tournament was being held...as a result, teams will be scattered all over the city which is not the ideal recruiting situation.  

Noah and I have no visitors this weekend to keep us company, so we are flying solo.  We don't have much on the calendar except for a long awaited visit to our new pediatrician tomorrow morning.  The timing of this appointment is perfect as Noah's button from his g-tube seems like its is getting a little loose.  We haven't be instructed how to replace the button yet, so it will be good to have someone with a little expertise take a look at it and assess the situation.  We also go to see pediatric surgeon and nurse next Monday who will teach us more about caring for the button.  

Some specific prayer requests for the next few days:

1)  That Noah will have a quiet weekend digestively

2)  That I will connect with Noah's new pediatrician and be able to communicate with her effectively

3)  That I will be emotionally stable while Josh is gone... regardless of the number of times Noah throws up.  

4)  That our house will sell soon... before the rain in St. Louis washes it away.

5)   That I find a way to celebrate Easter this Sunday on my own... it is just to hard to navigate church with Noah by myself, especially a new church.  

Noah's new tricks...

Noah has been a bundle of energy now that he isn't hungry all the time... he is babbling up a storm again (something we haven't heard in a long time) and trying new toys. Here are a few videos documenting his new tricks!

Visit from Moma

My mom came and stayed with us for a week... Noah had so much fun with her!

Alabama-isms #2

I drove my mom to the airport this morning while Josh took care of Noah... I took a little time for myself and went shopping in Birmingham before returning to Tuscaloosa.

While in trying on clothes at Banana Republic, I overheard two women talking in a dressing room down the way.  One said to the other (and you need to read this with a thick southern accent in your head)... "Why, I think I need to put my britches back on and go take a tinkle!"

You can't help but smile.

More good news

We have a pediatrician!

Ok... I haven't actually talked to her yet or made an appointment... but I got an email from our neurologist today indicating that he had talked to the pediatrician we were most interested in and she agreed to take Noah as a patient!  This a huge answer to prayer!

Also, and I am not sure why I am surprised by these sort of things anymore, we found out that there is a doctor/scientist in Birmingham who is doing research on one of two leukodystrophies that Noah may have... this is pretty amazing considering how rare these disorders are and how few doctors are choosing to research them.  

Steps Forward

Lots to report... I hope I remember it all!

1. We met with a service coordinator from the State of Alabama's Early Intervention (EI) program on Monday night.  She was great and provided us with lots of good information about the services available to us with Noah's diagnosis.  Perhaps the best news she told us was that Noah has a spot in the Rise School beginning in August!!  We will receive home services until then, which may include physical therapy, occupational therapy, help from a nutritionist, etc.  She also told us about a state program that will help us coordinate Noah's medical care with the help of a social worker.  The EI program is funded through the state of Alabama and the federal government, so expenses that are not covered by our insurance will be paid for by the program itself.  Needless to say, this is a relief.

2.  We met with our new pediatric neurologist, Dr. Percy, yesterday morning as well as the nutritionist he partners with.  This was a VERY informative appointment!  

-Noah has finally gained weight!  He weighed 14 lbs 12 oz yesterday... which is a 12 oz gain since the last time he was weighed 2 weeks ago!!  This was great news as Noah has not gained weight since his 4 month appointment (he is almost 7 months now) and reaffirms our decision to get the g-tube and switch formulas.  

-Dr. Percy was impressed with Noah's neurological development... he felt like Noah's fine motor skills were excellent and that he is alert and observant.  Noah's main developmental delay at this point seems to be in gross motor skills... i.e. rolling over, sitting up, using his arms for balance, etc.  These skills will be a focus of his therapy and certainly a prayer request to all of you are are interceding for our little guy!  

-Dr. Percy also shared with us that the search for the leukodystrophy (LD) affecting Noah has narrowed.  Test results have shown that Noah does not have 3 of the more common leukodystrophies (Krabbe's, ALD, peroxisomal).  There are two additional LDs that we are waiting for test results on and these seem to be more likely candidates as they display a slower progression of the disease.

-The nutritionist is going to connect us with a new GI doctor and a surgical nurse that will help us care for Noah's g-tube button and tackle any additional digestive system issues that may arise.  She is also going to coordinate with a dietician in Tuscaloosa for us so that we have a local resource for Noah's feeding issues.

-Dr. Percy is going to try to pull some strings with a pediatrician in Tuscaloosa... which is much needed as I continue to hit brick walls in this department.

3.  My mom arrived yesterday and will be here until Monday!  Hooray!  Josh leaves town on Thursday for a recruiting trip to Indianapolis, so I am very thankful for the company and the extra set of hands.  Anyone want to come next week while Josh is in Baltimore?? =)

Shadows prove the sunshine

One of my favorite bands is Switchfoot... and this song is one of my all time favorites... I thought I would share it here because I heard it today and it seemed to sum up my difficult weekend.  

Encouragement to share...

The last few days have been a little rough.  I sat down at one point in need of encouragement and read my devotional book called "Jesus Calling."  This pages of this book are filled with scriptures written from Jesus to us... to me... to you... here is what I read:

"Let me help you through this day.  The challenges you face are far too great for you to handle alone.  You are keenly aware of your helplessness in the scheme of events you face.  This choice opens up a choice to doggedly go it alone or to walk with Me in humble steps of dependence.  Actually, this choice is continually before you, but difficulties highlight the decision-making process.  So, consider it all joy whenever you are enveloped in various trials.  These are gifts from Me, reminding you to rely on Me alone."

Be encouraged.

Prayer Request: Sleep

Sleep is a precious commodity in the Lauer household... 

Noah's sleep schedule suffered greatly during the month of February, due to a variety of reasons.  He was under eating and would wake up hungry.  He had two hospital stays that confused his nights and days.  He slept in variety of different houses and beds. 

My hope was that being back in his own bed and on a more regular routine would help this.  Alas, it has not.  I am up with him multiple times during the night, often for long periods of time.

I have some theories as to why he wakes up and will post on those later.  In the meantime, will all you faithful blog readers please pray that Noah's sleep patterns improve? 

Whenever I see that smilin' face...

(Three posts in one day... can you tell I am going a little stir crazy at home?)
Now that Noah's nutrition is back on track (praise God for his g-tube), he has been a little happier and smiling more often. Here is a series of pictures I took as he showed off his grin (during the last shot he decided to make a grab at the camera!):

Noah speaks out

For the most part, Noah has been a pretty quiet little guy. Recently, however, he has decided to speak his mind. I managed to catch this video while he was hanging out in his swing... sorry to those of you who suffer from motion sickness!

Pediatrician prayer request

To all you faithful prayer warriors out there... here is a specific request:

Of the pediatricians in Tuscaloosa that have been recommended to us, all but one is not accepting new patients except newborns.  The one pediatrician who is accepting new patients works in an office with 3 other pediatricians and they do not have "private patients"... meaning that each time I took Noah to the office, I would likely see a different doctor.  Not an ideal situation when your child has a complicated diagnosis.

I am pleading my case to one of the doctors, Dr. Petitt, hoping that he will make an exception and accept Noah as a new patient.  I spoke with a nurse this morning and am waiting to hear back... 

By way of encouragement, I am excited to report that the pediatric neurologist who had been recommended to us seems to be willing to take Noah as a patient... we have an appointment scheduled with him (Dr. Percy) and a nutritionist on Tuesday of next week!  Thanks to all who have been praying for this!

My momma taught me better...

Josh and I have been overwhelmed by the support we have received from friends and family over the last month.  We have received meals, baptism presents, gift cards for restaurants in Tuscaloosa, money, prayers, cards, etc.  We continue to marvel at how the Lord is providing for us during this time.

Our immense gratitude, however, has not been translated into thank you notes yet... and, as the title of this post states, my momma taught me better!  So if you are reading out there in blog-land and have blessed us in some way, big or small, please know that we thank God for you and as soon as I can find my address book and stamps, a thank you note will be on the way!  

Good News!

I forgot to post this earlier in the week... we had some concerns that we were going to have to endure a 6-month waiting period to have insurance coverage for Noah due to his "pre-existing condition."  However, our insurance cards arrived in the mail on Monday and there will be no gap in Noah's insurance coverage!  Praise God!

Alabama-isms #1

As seen on a local tractor dealership:

"Don't buy no ugly tractor!"

Ponderings and progress

PONDERINGS:

I attended a women's Bible study this morning at the church we tried Sunday morning.  The women were welcoming and I am excited about getting to know them better over the next few weeks... they are completing a study called "The Amazing Collection" which is a study of the Bible book by book.  They are currently focusing on the minor prophets and we began today with Hosea.  There are a couple of quotes from the study that spoke to me as I wrestle with God over Noah's diagnosis...

Thomas Aquinas:  "Give me, O Lord, a steadfast heart, which no unworthy affection may drag downward;  give me an unconquered heart, which no tribulation can wear out; give me an upright heart, which no unworthy purpose may tempt aside.  Bestow on me also, O Lord my God, understanding to know You, diligence to seek You, wisdom to find You, and faithfulness that may finally embrace You, through Jesus Christ our Lord."

Gerard Hughes:  "God is continually drawing us to Himself in everything we experience."

PROGRESS:

I have been in the business of making phone calls these last few days in an attempt to get doctors lined up for Noah.  The progress has been slow but I finally got a call back from the pediatric neurologist (Dr. Percy) we had been referred to.  He has requested Noah's files from St. Louis and will likely see us next week sometime.  He has a particular interest in leukodystrophies and hopefully will bring significant knowledge to Noah's case.  I am still trying to find a pediatrician... it seems that most pediatricians in Tuscaloosa are only accepting newborns as new patients.  I have a few possibilities but please pray that we find just the right doctor...  I also got a message from the regional coordinator of Alabama's early intervention program (similar to First Steps in MO) and am anxious to find out what services they will be able to provide to us.  "Farther up and further in" I go...

Hello Spring!

It was a gorgeous 80 degrees in Tuscaloosa today!  Josh and I began the day by trying out Capstone Church... the service was contemporary and casual, somewhat reminiscent of our church in St. Louis.  We enjoyed the worship and even got a chance to chat a little with the pastor.  Josh is going to be out of town every weekend for the next month, so I was glad we got a chance to go to church at least once.

After a trip to the Wal-mart Supercenter (not something I recommend on a Sun. afternoon) for a few essentials, we took Debbie H. to see campus.  Noah loved his stroller ride around the quad... he slept most of the time until we woke him up for a photo shoot!  Here are a few of the pics:   

The Lauer family enjoying the quad

Noah with Bryant-Denny Stadium in the background

So serious!

We dropped Noah off at Grammy & Pappy's for the evening and took Debbie out to dinner to thank her for all she has done for us over the last few weeks.  She flies home in the morning.  

Even though I have been here for 3 days already, tomorrow really feels like the beginning of the adventure.  Josh will head to work in the morning and Noah and I will be left to figure out what life looks like for us on a daily basis.  A few prayer requests for the week:  

1)  Friends!  I need some!  

2) Connecting with doctors for Noah... that we can get in to see a new pediatrician and neurologist sooner rather than later. 

3)  Continued progress on feedings... Noah had a pretty good week with only a few hiccups and we need wisdom for deciding the next step to increase calories.  

4)  Sleep!  I need some!  (Actually, Noah has transitioned back to a decent sleep schedule.  We just have to wake up to feed him in the middle of the night and it takes an hour... zzzzzzz...)