Visiting the Leuchters

Noah and I tagged along on a recruiting trip with Josh over Memorial Day weekend and got to spend some time with our friends, Scott and Dena.  They had a little girl, Adelyn, in January who is an absolute cutie!  Dena, Adelyn, Noah and I spent the afternoon at the park and enjoyed some slightly cooler temperatures than recent days in Alabama. 

Thanks for letting us come visit!  We love and miss you guys!

What a smile!

Nap time!

Setbacks

Well, our 3 weeks of feeding bliss have ended.  

As I indicated in the "Priority Prayer Request" on the sidebar, Noah has been vomiting more (at least once a day) and not drinking from his bottle very effectively.  We have returned to using the pump, not because it prevents him from vomiting, but because we can spread out his feeding over a longer period of time, giving his stomach more time to digest.  This just means there is less in his stomach if he does throw up.  

We have an appointment with the pediatric GI on Wednesday... I'm doubtful that he will have any answers for us, but a girl can still hope.  

Noah does seem to be getting a tooth on the bottom... you can just barely feel a little bump when you run you finger across it.  I have been noticing him running his tongue along his bottom gums, so I guess he can feel it, too!  It also seems like there might be two teeth on the top that are close to the surface, but neither has broken through yet.  I wonder if this is affecting his ability to get a good seal on his bottle... 

Tired.

I'm tired.

Tired of dealing with insurance companies.

Tired of matching insurance claims to bills.

Tired of filing appeals.

Tired of scrubbing puke out of the carpet, the sofa, Noah's clothes.

Tired of doing laundry.

Tired of worrying about Noah's weight.

Tired of staring at the bottom of the growth chart.

Tired of trying to figure out how to get enough calories into my son.

Tired of having more questions than answers.

Tired of being sad.

Tired of feeling cheated.

Tired of putting on a brave face.

I'm tired.

But then I look at Noah's face.  

And there is no one else's momma I would rather be. 

I will refresh the weary and satisfy the faint.  (Jeremiah 31:25)

Big Al

The official mascot of the University of Alabama is Al the Elephant.  I came across this stuffed version of Al the other day while buying some UA shirts for friends... next thing I knew, he was in my hands, wanting to go home with Noah.

Noah's new splint

Thanks to Sharon, our fabulous occupational therapist, Noah now has a cool splint on his left hand!  He has a tendency to keep his thumb on that hand tucked across his palm, which makes his hand much less effective.  The splint does a great job of keeping that thumb in the right position... and proves that everything little is cute!

Crimson is... Hope

Needless to say, this is one of many ways God has shown us that we are in the right place...

Crimson is ... Hope

(Noah will be attending the Rise School beginning in August.)

Yum.

It's been one of those days.  So we're having bean dip for dinner.  Yum.

Here's the scoop...

We had a busy day yesterday with a few answers and a bunch more questions.

We began by celebrating breaking through the sixteen pound mark.  Noah weighed in yesterday at 16 lbs 1 oz!  His little legs are getting chubby and his diapers are getting snug!

Then, we focused on the results of Noah's test for Alexander Disease.  Noah has a mutation on the gene associated with the disease but it is an atypical mutation.  It occurs in a different location on the gene and the doctors are unsure if this is what is causing the abnormalities in Noah's brain.  To solve this mystery, they collected blood samples from me, Josh, and Noah.  If Josh or I show the same mutation (and are obviously healthy), then it is not the likely cause of Noah's problems.  This would basically put us back at square one.  If, however, we don't show the same mutation, then the assumption would be that the mutation plays some role in the disorder.  So now we wait...

A crazy side story.  When our neurologist (Dr. Percy) got the results of the test for Alexander Disease, he took them upstairs to another doctor (Dr. Brenner) whose research focuses on the gene that causes the disease.  When Dr. Percy asked him to take a look at the test results, Dr. Brenner looked up at him in disbelief and said that he had heard about this child and had been trying to locate him.  Dr. Percy laughed and said, "Well, he and his parents are coming to see me tomorrow morning!"  I doubt that Dr. Brenner had any idea that we were as close as Tuscaloosa! 

The good news is that Noah does not show any of the classic signs of Alexander Disease... his head circumference is staying in the normal range and he does not seem to be losing any of the development he has already attained.  If it is Alexander, then it is a much less aggressive form and for that we are grateful.

The visit to the eye doctor was equally as eventful.  The ophthalmologist agreed that Noah's eyes had worsened since our last visit and that the eye crossing would not likely be corrected by patching or glasses.  So, our sweet little boy is scheduled for his second surgery in his first year of life.  It is an out-patient procedure that should have a fairly quick recovery time.  It is tentatively scheduled for June 13th.  We are nervous about the surgery, especially that the sedation would throw off the sensitive balance we have achieved with Noah's eating, but trust that the Lord has it all in His hands.  

It's a mad, mad world

A little light reading for this Monday morning...

When Did Happy Meals Get Sexy?

14 Tons of Oreos Spill on IL Highway

Bama Softball

We attended our first official Alabama athletics event last night... the Alabama softball team was playing in the NCAA regional final against Jacksonville State. We loaded Noah up in the Baby Bjorn and headed to the softball stadium with Judy Green (the head volleyball coach/Josh's boss) to enjoy the evening. Bama won in style with back-to-back-to-back home runs in the bottom of the 5th inning... it was a very fun evening!

Josh, Noah, & Coach Green

Sunset over the softball stadium

To the doctors we will go...

We have two important doctor appointments this week...

Our first appointment is with Dr. Percy, who is our pediatric neurologist.  We are hoping that he has received the information on Noah's genetic testing that indicated he has Alexander Disease.  The test results were initially received by the neurologist that we were seeing in St. Louis, and, for the second time, there seems to be a breakdown in the information flow from that office to Dr. Percy.  We are anxious to have these test results analyzed, not only to give us insight into Noah's condition, but so that Josh and I can begin to have some genetic testing done.  It is important to us to discover if we are carriers of of this disorder or if it was caused by some kind of random mutation.  

Our second appointment is with Dr. Hein, our ophthalmologist.  I moved this appointment up because of my growing concern over Noah's eyes.  He is cross-eyed about 90% of the time and we haven't seen much improvement from patching.  His vision still seems clear, which is a praise, but we are really praying that the doctor has some ideas about correcting N-Jack's eye position.

We'll keep you posted!  Thanks for your prayers!

Confessions of a sap

It's true.  I am a sap.  

I get teary-eyed very easily.  Always have.

Real-life or fiction, it doesn't seem to matter.  American Idol elimination last night?  Yep... got choked up during every contestant's visit to their home town.  (And David Cook had better win...)  Remember those Hallmark commercials when the mom would anonymously give a card to the lonely man next door... tore me up every time.  

Needless to say, I can barely read sweet stories to Noah like "Guess How Much I Love You" because my voice starts trembling as I try not to cry.  And when I see Josh with Noah, even being silly, I often have to distract myself or risk turning it to a blubbering mess.

These ponderings about my personality come during a morning-long torrential downpour here in Tuscaloosa... the perfect day to relax, drink some Chai Tea Latte, and watch as many movies as I can as I snuggle with my adorable little boy on the couch.  I just sniffled my way through "Akeelah and the Bee" - a great movie, if you haven't seen it.  I was struck by Akeelah's final line in the movie:

"You know that feeling where everything feels right? Where you don't have to worry about tomorrow or yesterday, where you feel safe and know you're doing the best you can? There's a word for that, it's called love."

See... sappy.  But I love it.  In the midst of all the uncertainty with Noah, the craziness of our move to Alabama, the angst of leaving friends and familiarity, there are still days where "everything feels right" because of the love Josh and I have for each other, for Noah, and for the Lord.  Those are the days when I can live fully in the present, enjoying every moment, and letting yesterday and tomorrow take care of themselves.  

Alright.  Enough.  Even my cheese-meter is going off... 

Representin'

We may live in Alabama now, but a piece of my heart will always be in Kirkwood.  Noah is representin' the Wood thanks to Ms. Gallagher and Mr. Maniaci!  I taught in Kirkwood for 5 years before taking a leave of absence to have Noah.  The plan had been for me to return to teaching at NKMS this August, but that plan obviously changed when Josh accepted his job at UA.  I miss the staff and students and will be hard pressed to find as great a school to be a part of in Tuscaloosa.  

How cute are my nephews?

Harry is in the front, with Stuart and Sam in the background.  

Uncle Josh and Aunt Deb miss you guys!  

Alabama-isms #5

Let's make this one a guessing game!

There is a store in Tuscaloosa called "STICKS N' STUFF".  

Any guesses what they sell?? 

(No cheating by looking on Wikipedia or the like...)

(Author's disclaimer:  These Alabama-isms are in no way meant to be offensive to those readers who live in this beautiful state.  Just observations of a new transplant who has spent her whole life in the Midwest.)

Noah and the zoo...

My mom is in town for the week and we decided to take advantage of the beautiful weather by visiting the Birmingham Zoo. Here are some of the "people pics" from our visit with a few shots of the animals posted in the previous entry. Enjoy!

Family pic in front of a random truck...

Noah, meet Mr. Goat. Mr. Goat, this is Noah.

Noah sleeps, just like most of the animals today!

Dad takes care of the ceremonial diaper change
before heading back to T-town.

The resident animals at the Birmingham Zoo

Can you see the turtle?

Giraffes, my favorite.

This gator did not move a muscle the whole time we were watching.

Public service announcement

America, if you are listening, PLEASE do not let Jason Castro continue for another week on American Idol.  Please.  I can't take it anymore.

My chunky monkey

Diamonds are a girl's best friend

As some of you know, I have been unable to wear my wedding rings since about halfway through my pregnancy with Noah. That was just about one year ago! I finally gave up waiting for my fingers to return to their pre-pregnancy size and took them to a local jeweler to have them resized. I picked them up on Saturday... I feel like I got engaged all over again because I can't stop looking my rings! Aren't they beautiful?!

Hooray! Daddy's home!

May is a beautiful month to be a volleyball coach's wife. The first few weeks of the month are a "dead period" for recruiting when division I college coaches cannot leave campus for recruiting purposes. That means that Daddy gets some quality time at home! Which is a good thing when Momma looks like this:

Email change

It is the end of an era.  My old sbcglobal.net email is no more.  May it rest in peace.

Please update your address books with our new email addresses:

DEB - deblauer@gmail.com

JOSH -  jmlauer11@gmail.com

Virtual exile

No email?  What?

Imagine my horror when I tried to log on to my email today and I got this message:

"You no longer have access to your AT&T Yahoo! account because your AT&T Yahoo! Internet services have been suspended."  

Josh is pleading our case to Bell South right now... 

"Yes...I have tried prune juice already..."

Ahhh... the joys of a constipated baby.  

We have been boosting the calorie content of Noah's feedings by making his formula more concentrated.  While this might encourage weight gain, it also tends to make Noah's bowel movements the consistency of rocks.  Not pleasant for anyone involved.

So, for the past few days, I have been mixing in an ounce of prune juice with Noah's formula at one feeding (which, by the way, makes his formula a nice mocha color) with the hope of loosening things up a bit.  I even went so far as offering him baby food prunes.  When day three of no pooping came along, I was ready to give him a bath in prune juice if I thought it would help!

I emailed one of Noah's nutritionists (don't ask me why we have two, we just do) this morning to find out if she had any suggestions.  She recommended calling our pediatrician and asking for a prescription for a stool softener.  When the nurse in the office called me back, she said, "Have you tried prune juice?"  I stifled a laugh, and said, "Yes...I have tried prune juice already..."

Happy Birthday Josh!

You are a wonderful husband and an amazing father!  

One week, 7 days, 168 hours...

I'm still trying to be cautiously optimistic.  

But the truth of the matter is that we have not had a week like this since Noah was 3 months old... it has been over a week since Noah threw up and exactly a week since we have had to use the feeding pump for any portion of a feeding.  

Praise God!