Fellow bloggers

I have had several requests from fellow bloggers for the picture file of the prayer card we passed out at Noah's baptism (see my side bar).  I'm happy to send the file to anyone who would like to post it on their blog... just email me at deblauer@gmail.com!

Josh in Reno

UPDATE: Josh arrived home safe this (Sunday) afternoon! There were several additional quakes in the Reno area today, but none stronger than a 3.

Earthquakes seem to be in the news of late but seeming distant from our new home in the South.

However, Josh is in Reno this weekend recruiting at the Far Western qualifier and there have been many small earthquakes reported in the area over the last few days. Scientists now are indicating that these smaller quakes may be precursors to a much larger one... which of course has got me worried.

Please pray for his safety! He is supposed to fly home tomorrow morning.

How quickly things change

Before having a baby, I always heard parents talk about how quickly their kids changed... each minute they seemed to grow bigger and learn something new.

This has not exactly been our experience.  Noah's leukodystrophy caused his development to stall somewhere in the 3 - 4 month range and we haven't him achieve many milestones since then.  

That is why this week has been so amazing.  I don't know if I can effectively communicate the difference that a few days has made in Noah's life.  His new skill with the bottle has continued, with most feedings lasting no longer than 30 minutes and with significantly less stress.  I usually dread feeding time but over the last few days it has been decidedly peaceful.  He is mastering the spoon and seems to like any baby food I offer him from sweet potatoes to prunes.  Tummy time has basically become non-existent because as soon as I put him on his tummy he rolls over!  I have even seen him roll over once to his weak (left) side, although he usually chooses to roll right.  And this afternoon he has treated me to a chorus of cooing like I have never heard before (see video below).  

I am doing my best to remain cautiously optimistic.  We have no idea what the future holds for Noah and, as I have written before, seek to celebrate each and every one of his accomplishments, no matter how small.  But, I have to admit, what he has accomplished this week leaves me practically giddy.  Thanks for all your continued prayers... God is listening!

Record breaking

Yesterday, Josh took the day off and we headed to Birmingham for an appointment with Noah's pediatric surgeon. He replaced Noah's button with one that was slightly longer as the previous one was getting a little snug. We were also able to get a prescription for a steroid cream that will help take care of the nasty granulation tissue that keeps cropping.

After the appointment, we went to visit our friends Chris and Patience Peters at St. Vincent hospital. Chris and Patience were in a serious car accident on Monday... Patience was admitted with a broken ankle, a collapsed lung, a fractured rib, a partially fractured sternum! Please join us in praying for her quick recovery and a minimizing of her pain.

We did a little shopping then headed back to Tuscaloosa where we dropped Noah off with Josh's mom so we could have a date night. Here is where the record began to be broken...but I need to back up a little.

A few weeks ago, Josh's mom and I attended a feeding clinic with Noah. We were looking for some insight and advice on Noah's feeding issues... it usually takes him an hour to eat at least and often we have to pump at least half or more of his bottle. At the time, I asked if we should switch from a level 2 to a level 3 nipple (we use Doctor Brown bottles). The occupational therapist discouraged us from doing this for fear that the increased flow of formula might trigger Noah's extremely sensitive gag reflex.

Fast forward back to yesterday afternoon... Josh's mom bought some level 3 nipples and thought she would try one to see if it helped anything (she is much braver than I am). Miraculously, it did! At that feeding as well as the next four feedings, Noah finished his bottle in 20-30 minutes. And get this... we did not have to use the pump in 24 hours! Unbelievable. I did have to pump about 1/8 of his last feeding tonight but only because he fell sound asleep. Hopefully this is a trend that will continue!

Finally, a few pictures for your enjoyment... Noah looks a whole lot more stable sitting in these pictures than he actually was, but it is a start! And, you have to admit, he is pretty stinkin' cute!

Goodbye 8 West Rose

Our house is officially sold!

We more relieved than anything else. Word has it that the housing market in St. Louis continues to struggle, so having a buyer and getting a semi-decent price feels like a major accomplishment.
And, through the course of our last negotiations, the buy agreed to move closing up to the beginning of May. This is HUGE as it will save us additional money on utilities and mortgage payments.

I did love that little house and it will always have a special place in our memories as our first home!

Ask and ye shall receive

Needless to say, we were excited to see Noah roll! I don't know how many people specifically prayed for this over the last 24 hours, but God clearly heard! He rolled about 5 times (each time from his belly to his back) and then dozed off. Please keep praying as he still has a long way to go!

Spring cleaning

I decided that the blog needed a little freshening up. I have been using the same format for over a year and figured a change was in order. I hope you like it!

I also added a section on the sidebar entitled "Priority Prayer Requests"... many of our faithful friends and family want to know how to pray for Noah more specifically and this seemed like the easiest way to share those requests.

Finally, a HUGE thanks to the Cobbs and the Fitterers for going above and beyond the call of duty by sending us some Bandana's Sweet and Smoky BBQ sauce and Zia's sweet Italian dressing (which I was dreaming about in my earlier food fantasy post). Thank you for making us feel so loved and cared for!!

Evolution of a tummy time fit

I think the pictures tell the story...

Milestones

Noah giggled for the first time today!

He is a pretty serious kid and, at best, he usually gives us this half laugh that seems to say, "Okay, you're a little funny, but not that funny."

But today it was the real deal.  He was on the changing table and I was attempting to entertain him through a little bit of tickling.  For whatever reason, he thought it was hysterical.  He gave me a few good giggles and I got so excited I called my brother in from the living room.  

Let's hope for a repeat performance for Josh... it healed my heart a little just hearing it!

Alabama-isms #4

I have been to two grocery stores so far (Food World & Bruno's) that when I use my debit card ask me for my "secret code" instead of my pin number.  Not sure why, but it really struck my funny bone.  

Tagged! (I'm it!)

There is a game of tag afoot in the blogging world and I have been tagged twice in the past week by two of my sweet friends, Michelle and Debbie. My job now is to list 7 things about myself that most people don't know... then I can continue the game by tagging others. So here it goes:

1. I played two years of volleyball in high school, my freshman and sophomore years. My coach would often put me in because I had a wicked floating side serve. Why does this story always make my husband chuckle?

2. I once tried to be an item writer for the ACT test.

3. I had a stuffed animal collection when I was growing up that included an armadillo, a buffalo, and a walrus.

4. I love mail. I get excited every time I go to the mailbox, hoping for some letter or package that will brighten the day. Lately, that excitement has been tempered by the number of bills that have been arriving, but it is still there.

5. I've fractured my nose twice. Once was when I fainted while teaching and did a nose dive onto one of the lab tables in my classroom. At the emergency room, the X-ray revealed that my nose had been fractured previously. Who knew?

6. My dream vacation would be to visit Australia and New Zealand.

7. I got into a yelling match with an assistant coach from an opposing team while Josh was coaching at UMSL. The head coach had been pulling all sorts of stunts during the match to change the momentum (telling his players to tie their shoes before serving, making huge productions over questionable calls, etc.) and I was already pretty fired up. They were serving us pretty short and before each serve I would yell, "Watch the short serve!" A completely pointless thing to yell, as the girls were as aware as I was that they were serving short, but it made me feel better. At one time out, the assistant coach stepped out of the huddle, gave me a look of death across the gymnasium, and yelled, "Are you calling our serves?!?" He was accusing me of watching the signs they were using to call serves and yelling them out to our team. An accusation made more humorous by the fact that, in spite of Josh's repeated explanations, I can NEVER remember the serving zones. I yelled back, "Yeah, right!"

I forgot to continue the game... so I tag... Gina D., Linz, & Dena L.

Uncle Erik comes to visit!

As Josh's hectic recruiting travel schedule continues, we get really excited when people come to visit. This weekend my brother Erik ventured across the country from Colorado to hang out with Noah while Josh traveled first to New Orleans and then to Minneapolis.

This afternoon we explored Moundville, believed to be the site of an ancient Native American mound city. It was a gorgeous day and and we enjoyed getting some fresh air. Doesn't Noah look super cool in his new shades?

Be my friend

I have stumbled into the world of Facebook. Like I didn't already spend too much time on my laptop...

I'm 8 months old!

You know it is going to be a long day...

You know it is going to be a long day when poop drips out of your child's diaper when you pick him up from his crib.  

The Good, the Bad, and the Ugly

{the good}
We may have sold our house! The house is officially under contract and we are waiting to hear back from the buyer after the building inspection.  We settled on a price that is a little lower than what we wanted but decided that we would save money in the long run by not having to pay utilities, mortgage, etc., waiting for another buyer.  Please join us in praying that the deal would go through with no hitches!{the bad}

We received confirmation today that Noah's disorder is, in fact, a leukodystrophy.  He tested positive for Alexander Disease.  We had begun to hope in recent days that his condition was developmental and not genetic, which would mean that we would not see any further degeneration of his brain.  Unfortunately, this is not the case.  We are glad to finally put a name to the disorder and are anxious to begin researching possible treatments available.  I'll post more information as we learn it.  

{the ugly}

This mess of papers represents all of the insurance claims/bills for Noah's medical treatment in the last month and a half.  I am learning more than I care to about the medical insurance industry and have had my share of frustrations in the last few weeks.  At the top of my list is the audacity of an insurance company to bill us for out-of-network charges for a doctor randomly chosen to participate in an in-network hospital procedure!  Arrggh.   

Not quite the beach, but almost

This past weekend was the longest I have ever been away from Noah.  We both survived.  =)

While Noah played at Grammy and Pappy's house, I headed to Gainesville, Florida with Josh and the Alabama volleyball team to take in the action at the first SEC sand volleyball tournament.  The tournament was held on the campus of the University of Florida and we couldn't have asked for more beautiful weather.  The only thing missing was the pounding waves of the ocean.  And an appropriate amount of sunblock on my left shoulder.  Ouch!

I had intended to bring my good camera and attempt some to take some action shots, but I forgot the camera at home.  But, if you are interested in seeing the girls at work on the sand, check out this link to the Crimson Tide photo gallery.  The pictures are much, much better than any I could have taken!  And, if you look at the gallery labeled "April 12," you might even catch a glimpse of me!  

Learning Dutch

A good friend of mine recently emailed to share her sorrow with us over Noah's diagnosis.  As with many people, she struggled to find the words to write and in the end shared with me an article that had been printed in the St. Louis Post-Dispatch some years ago.  I share the article here because I was moved by how perfectly the author captured my emotions... and I hope it helps those who are walking beside us understand our journey a little better.  

Welcome to Holland

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondola in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean, Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced that Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned."

The pain of that will never, ever, go away, because the loss of that dream is a very significant loss. But if you spend your life mourning the fact tht you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.
by Emily Pearl Kingsley (printed in the St. Louis Post-Dispatch on October 29,1990)

Food Fantasy

I spent several summers working at a backpacking ranch deep in the Colorado mountains.  We would spend 6 days in the wilderness carrying all that we needed in our packs.  By the fifth day, we started longing for food that didn't need to be eaten out of a two-cup.  We would sit around in the evenings and indulge in "food fantasies"... each person describe what food they wish they could pull out of their pack and devour.

I'm no longer in the mountains, but I am far away from some of my favorite foods in St. Louis.  So, indulge me as I take you along on a visual tour of my STL food fantasy...

I mean... is there a BBQ sauce better than Bandana's sweet and smoky???

I stopped dead in my tracks when I realized that I couldn't buy 

Zia's sweet italian dressing in the grocery stores here... so sad!

Trattoria was our favorite "date night" restaurant.

Great pizza, great atmosphere.  Racanelli's is a close second...

especially when the wait at Dewey's was out the door!

The perfect breakfast place... I'm thinking of opening one in 

Tuscaloosa and making my first million!

By request...

I was telling my friend Debbie Holley about our attempts to feed Noah solid foods by spoon and she requested a picture of the messy event. So here it is!

By the way, we received a more respectable counter offer from the guy interested in our house in the Lou... we've counter offered again and are waiting to hear back.  Who knows?

West Rose update

Sometimes, in the midst of all the doctor appointments and "settling in" that I have been doing, I forget that we still need to sell our house in St. Louis!  (Kind of a BIG thing to forget, don't you think??)

So far there have been many showings but no nibbles... until yesterday.  And "nibble" is truly the word for it as the offer was significantly under our asking price.  Not too surprising in this market, but definitely not an amount we were willing to settle on considering the amount of work we have done to the house in the time we have owned it. 

We are making a counter-offer and trusting that God will work it out if this is the buyer He has picked out for our house!  Prayers would be appreciated!

Faith as a challenge

I read a thought-provoking article today that I found linked from the Rabbit Room... I encourage you to read it in its entirety (click here) but thought I would include a few passages here for you to chew on.  It certainly spoke to me and the journey we have been on with Noah.

"At any rate, genuine faith is no such comfort, at least not in the way of an easy kind of comfort. On the contrary, it is quite demanding. Esteemed author Madeleine L’ Engle expressed it well in a recent issue of Newsweek:

NEWSWEEK: So to you, faith is not a comfort?

MADELEINE L'ENGLE: Good heavens, no. It's a challenge: I dare you to believe in God.

NEWSWEEK: Many people see faith as anti-intellectual.

MADELEINE L'ENGLE: Then they're not very bright. It takes a lot of intellect to have faith, which is why so many people only have religiosity.

(May 17, 2004 Newsweek)

Faith, in other words, is an unflinching engagement with the world around us. It doesn’t allow us to retreat to the comfort and ease of unbelief. Instead we are called to live in the tension between what we see with our eyes and what we are called to see by faith.

Author Frederick Buechner challenged believers to read the morning paper with its list of tragedies and injustices before making proclamations of God’s goodness and sovereignty; meaning that the only faith that is worth much of anything is the kind that knowingly sees the worst of the world and still says: "blessed be the name of the Lord." This kind of faith is not for the faint of heart."

Noah shows his colors

Alabama played in a spring tournament today against Samford and Jacksonville State... Noah and I ventured out to see our first Bama volleyball. Noah insisted on wearing crimson and loved watching the first few games... but eventually had to get a little shut eye.

(Thanks for the great new shorts, Moma!)

Welcome to the world Lucy Locke!

Other good friends of ours, Cory and Stephanie Locke, also welcomed a little girl into the world yesterday!  Congratulations... we love and miss you guys!  We are sure that Lucy and Elise will become fast friends as well as birthday buddies!

Welcome to the world Elise Snyder!

Our good friends, Cory and Nicole Snyder, welcomed their little girl into the world today. We love and miss you guys... congratulations!

And people wonder why I taught middle school...

      

Where else do the winners of a fundraiser get to do this to their teachers?  North Middle... I miss you!

We love visitors!

My good friends Deana and Ashley ventured down to T-town for the second half of their spring break to hang out with Mr. Noah Man... we were so excited to see them and hang out while Josh was recruiting in the frozen tundra of Wisconsin.  

 

We spent a little bit of time walking around on campus, soaking in the 80 degree temps and the beautiful flowers blooming everywhere.  Deana and Ashley were even gracious enough to wake up with Noah one night so that I could sleep... are there better friends?  

(Ashley... Noah wants to know when you are going to come back and sing the "poop song" to him again!) 

Update on the nitty gritty

Many have been asking about how Noah's doctor visits have been going since we have been in Tuscaloosa... so I thought I would share what we have been able to accomplish so far.

1.  Doctors seen:  pediatric neurologist, pediatric surgeon, pediatric ophthalmologist, pediatric nutritionist, and pediatrician

2.  Doctors still to be seen:  pediatric gastroenterologist

3.  Diagnosis progress:  We have ruled out Krabbe disease, ALD, peroxisomal disorders.  We are waiting for test results for Alexander and Canavan diseases.  

4.  Feeding volumes:  Immediately after Noah's g-tube surgery, he was able to tolerate 4oz/120mL of formula per feeding.  We have worked our way up to 5.6oz/170mL of formula per feeding over the last month.  We are hoping this translates into positive weight gain.  Vomiting is still occuring periodically.

5.  Feeding issues:  Noah is incredibly unpredictable when it comes to the bottle.  At times he is willing to take the entire feeding via bottle, other times he will only take an ounce or two and we must pump the rest.  He recently has started making a "brussels sprout" face in the middle of feedings... which involves screwing up his face and spiting out any formula in his mouth... that basically signals the end of his willingness to take the bottle.  This unpredictability is emotionally draining for me as I wish his response to the bottle was a little more consistent.  

6.  Rise School:  We met with the service coordinator at the Rise School and toured the facility.  We loved everything we saw and are excited for Noah to begin attending in August.  Noah will be evaluated by an occupational therapist, physical therapist, and speech therapist on April 15th to determine what specifically we need to work on.

7.  Whew.