Saturday, June 28, 2008

New challenges. (As if we didn't have enough already)

1.  We are diving head first into the world of solid foods.  Noah simply cannot consistently keep formula down and he seems to better tolerate baby food.  The first challenge is getting enough food into to him to meet his calories needs... the second challenge is keeping him awake through feedings as food coma seems to set in after two bites.

2.  Noah has developed a new vocal ability... screaming.  Our normally calm and serious little boy has discovered his vocal cords have much more power than he realized.  He has been fine tuning this skill every time I leave the room, put him down, or change his clothes when he isn't in the mood.  Charming.  

3.  I am learning how to wait on the Lord.  Again.  (Haven't I been here before?)  It is clear how God is providing for Josh in his job at Alabama...he is enjoying his new position and all the challenges it entails.   It is even more clear how Noah has been provided for by the doctors, researchers, and his spot in the Rise School.  His provision for me seems to be a little slower in emerging.  I won't lie... I miss St. Louis, I miss my friends, I miss my church.  I have wrestled with God about His reasons for moving us to Alabama.  But, as I was driving to Florida, God worked a little on my bitter heart.  He showed me that, had I been given the choice between staying in St. Louis (where I was comfortable) or going to Alabama (where Noah would be able to attend an amazing school and be close to a scientist researching his mutated gene), I would have chosen the same path He chose.  So, I am resting in the provision He has made for those I love most and awaiting what He has in store for me.

Thursday, June 26, 2008

Home again, home again...

I arrived back safe and sound in T-Town yesterday, feeling refreshed except for the large stripe of sunburn across my back.  
(Will I ever learn?)

Noah gave me a half-smile (which is a big deal these days) when he saw me for the first time and then proceeded to welcome me home by puking baby food chicken and prunes all over the place.  Yes, it was as nasty as it sounds!  

The good news was that was the first time he threw up since I left... Josh focused on giving him solid foods and that seemed to get his stomach calmed down to a large extent (at least until I arrived home and Noah felt like he needed to revisit old times).  We are still working to increase his tolerance of the formula as a supplement because it simply has more calories than any of the solid foods.  The battle continues...

Here are a couple pics from my time along the Gulf of Mexico!




Saturday, June 21, 2008

Playing hookey...

Thanks to a few generous friends*, I am posting to the blog from FLORIDA!!  

Noah is back in Tuscaloosa enjoying "Boys Weekend 08" with his dad while I have ventured to the beach for a few days to hang out with the girls.  I'm going to do my best to rest and relax before heading back to T-town... especially because Josh leaves for a week long recruiting trip on Thursday!

So... if you don't hear from me for a few days, I'm just soaking up the sun along the Emerald Coast!  

(*Thanks Deana, Ashley, Anne, & Lindsey... you're the best!)

Thursday, June 19, 2008

Noisy Noah

We have entered the world of teething... two of Noah's bottom teeth have broken through and a bunch more are on the way on the top.  As a result, he sucks/chews on anything we offer him.  

The other day he started sucking on his teething ring... I stopped laughing long enough to grab my camera and record this:

video

Before and After

Progress is progress, no matter how small, right?

We are one week out from Noah's eye surgery.  It has been a long week as his recovery from the anesthesia has been slow... he still is not back to his normal self but we are seeing a little improvement day by day.  The eyes themselves seem to be healing, although his left eye still has some bruising.

The surgery definitely helped with the alignment of Noah's eyes, although they are by no means straight.  I would be lying if I said I wasn't disappointed ... but I also know the surgeon wanted to be conservative in his correction to avoid overshooting his goal.  

Josh will take Noah in for a re-check with the ophthalmologist on Monday... we are both interested to see what he says.

BEFORE

AFTER

Tuesday, June 17, 2008

10 months


Happy 10 month birthday, little Noah man.  We love you.
-mom & dad

An invitation


"Everyone who travels the road of faith requires assistance from time to time.  We need cheering up with spirits flag; we need direction when the way is unclear."

This quote is from Eugene Peterson's "A Long Obedience in the Same Direction: Discipleship in an Instant Society."  I began reading this book yesterday as a part of a women's book club at Capstone Church.  

The book focuses on Psalms 120 - 134, otherwise known as the Song of Ascents.  These psalms were "likely sung, possibly in sequence, by Hebrew pilgrims as they went up to Jerusalem to the great worship festivals."  Peterson, and the psalmist, use the songs as a metaphor of the faith-journey we are on with Christ.

I have read the first two chapters so far and am very intrigued.  If I am sure of anything right now, it is that Josh and I are on a journey where my spirits are flagging and the way is unclear.  I hope and pray that these Psalms and Peterson's insights will illuminate the path and give me the energy I need to continue.  

I wanted to extend the invitation to you to read it with me.  I'm never really sure who is reading this blog, but anticipate sharing what I learn from this book in my posts.  So, if you need a book to read or are intrigued by Peterson's ideas, feel free to join me and comment as you go along.  I'm reading chapters 1-4 this week.  

Monday, June 16, 2008

1 in 3,000,000,000

I talked to our neurologist this morning.

Our blood tests reveal that neither Josh or I have the same mutation as Noah.  

Which means that Noah is one of two documented cases of a mutation in this genetic region IN THE WORLD.  (So we affectionately tell him he is 1 in 3 billion...)  Apparently, there is a journal article originating from Japan about a child with similar mutation but it provides precious little insight into Noah's condition, especially his feeding issues (the child in Japan was not seen in the hospital until he/she was 11 months old leading me to believe that the same feeding issues did not exist).  

So, we move forward into uncharted territory.  Literally.

Noah's MRI is being sent to a pediatric neurologist/radiologist in the Netherlands to get her expert opinion on the mysteries that lie within that scan.  We will probably have another MRI done after Noah's first birthday to see what kind of changes have occurred, if any.  I have a feeling Noah might be of interest to the scientific community, in that this mutation appears to be "new" and unresearched.  

There continue to be questions.  The deep, aching kind that make us wrestle with God and makes me weep in the shower.  The practical kind that forces us to vary our perspective on our home, our finances, our car, our time.  The medical kind that makes me thankful for our scientific backgrounds (Josh - chemistry, me - biology) so that we can understand the language the doctors speak.

What is there to do but trust?

"Those who know your name will trust in you, for you, LORD, have never forsaken those who seek you."  Psalm 9:10

Sunday, June 15, 2008

Unbelievable

As some of you know, I graduated from high school in Iowa City, Iowa. My parents moved to Michigan shortly after I graduated from college, so I don't go back very often, but the town still holds a special place in my heart. I also have many friends who still live in the area.

All of the rain this spring has resulted in massive flooding in many cities in Iowa, including Iowa City. The extent of the flooding is unreal.  I found this video on the Des Moines Register website and thought I would share it here. Please join me in praying for all those affected by this flooding... I don't think the Iowa River is expected to crest until late Monday or early Tuesday.

(Okay... I had to remove the video because the music drove me crazy anytime I went to update the blog or read comments... if you want to see it, click here)

Saturday, June 14, 2008

Oh, the horror.

Eye surgery
         +
Digestive issues
         +
Teething
         =
Very little sleep

Friday, June 13, 2008

Our trip in pictures

(The video wasn't working yesterday... but I think I fixed the bug so it should work now.)
Here is a 5 minute slide show of our trip to New Haven... I tried to make it snazzier in iMovie but my computer was acting up. So this is the un-snazzy version. Enjoy.

Thursday, June 12, 2008

Degoogled.

We are at home recovering from a very long day.

Noah has shaken off the grogginess from the sedation and lets us know from time to time that his eyes hurt.  They are definitely raw looking but not nearly as crossed.  We are slowing trying to reintroduce his stomach to food and hoping the anesthesia hasn't further confused his digestive system.  

The night ahead brings the next challenge as Noah seems somewhat attached to having us nearby.  He slept a lot this afternoon but hopefully will be exhausted enough to sleep through the night as well.  'Cause mom and dad are tired, too!

Out of surgery.

We haven't seen him yet, but the eye doctor came in and said the procedure was finished and all went well.  

Wednesday, June 11, 2008

Back to reality.

I realized today that I needed to switch out of vacation mode and back into medical mode.  Bummer.

Noah's eye surgery is scheduled for tomorrow at noon.  We have to be there around 10am and Noah can't have anything to eat after midnight tonight.  He can drink apple juice, pedialyte, or water after midnight until 8am.  If all goes smoothly, we will be able to bring Noah home to sleep in his own crib tomorrow night.  

Another sad reality is that I have outgrown my laptop.  For those of you who know me well, my laptop is my constant companion and is my main way of keeping connected after our move to Alabama.  Josh informed me tonight that my hard drive is basically ready to explode because I am using every inch of space available... I'm going to have to move some files to an external hard drive to lighten the load a little... or buy a new laptop.  The latter option is not really in our financial cards right now (unless we sell both my laptop and Josh's laptop), so hopefully I can move enough files to temporarily solve the problem!

I'll end with a fun video clip of Noah from our trip to New Haven.  We hung out on the beach for an afternoon and while we were there Noah learned a new trick.  Check it out:

video

Tuesday, June 10, 2008

Back home again.

After a long day of traveling, we are home safe and sound from our trip to New Haven. We had a wonderful time... Noah LOVED hanging out with his aunt and uncle! I'm working on compiling our pictures into a slide show, but here are a few to give you a taste...

Nick and Beth during our walk around the Yale campus.  
(Yes, it was cold enough for jackets that day...)

Our little family at the beach in Rhode Island
(Yes, it was hot enough for the beach this day...)

A pacifier, the ocean, and a nap... what more do you need?

Friday, June 6, 2008

Welcome to the world, Samuel Fabbiano!

Congratulations to our friends Jeff and Katie on the birth of their son, Samuel!

We made it!

It was a really long day yesterday but we made it to Connecticut!  This means that Josh has gone coast to coast in one week's time... last weekend he was recruiting on the Pacific in Anaheim, CA and this weekend we are on the Atlantic.  Noah did great on the plane... although he decided to have a big poop about 20 minutes into the first leg of our flight.  Yep, the kind that went all the way up his back and everywhere in between.  It's a good thing that noses adjust to smells after a few minutes, otherwise everyone on the plane would have had a very unpleasant remainder of the flight.  

We are loving the chance to see Nick and Beth... and they are loving the chance to love on Noah. I'll post some pics once we get home!

Wednesday, June 4, 2008

GI Report


We ventured into Birmingham early this morning to meet with our awesome pediatric GI... he's one of those doctors you feel comfortable with immediately and who acts like he has all the time in the world to discuss your child with you. Those are the best doctors.

Our new plan of action is to give Noah a medication that will encourage his stomach to empty into his small intestine a little more quickly. The faster we get food out of his stomach, the less likely it is to come back out the other way! We have another medication to try in a couple of weeks, if necessary, that will calm the nausea center of his brain.

We also talked about formula changes for when Noah is past 12 months... which made me realize that he is going to be ONE YEAR old in just 2.5 months! I can hardly believe it!

Perhaps the biggest development after this appointment was trying the "bolus feed". When we use the feeding pump, we usually feed Noah over the course of 1 hour. With the bolus feed, we can give him over the course of about 10 - 15 minutes. The fear of him vomiting remains, but, if we can get his stomach calmed down, it would revolutionize my day!

We head to New Haven, CT, tomorrow to see Uncle Nick and Aunt Beth for the first time since Christmas... not looking forward to the long plane ride (please pray for no public throw-ups!) but can't wait to see them!!!

Monday, June 2, 2008

A hunting I will go...

Job hunting, that is.

With Noah going to school from 8:30am to 2:30pm every day beginning in August, I am looking to go back to work sometime this fall.  

I have thought about lots of options but remain unsure about what to pursue.  Returning to full-time teaching seems a little overwhelming at this point, knowing that grading papers and lesson planning would compete with my time with Noah in the evenings.  It also would make taking Noah to doctor appointments in Birmingham difficult, not to mention traveling with the team at all during the season.  

Substituting appears to be a good option.  (Although I may have to contact Sally Lapides to find out all her subbing tricks... she is widely known as the best sub ever seen at NKMS as well as an all around wonderful person).  Subbing provides a lot of flexibility but has some obvious drawbacks... Jeanette always did a great job of setting a tone with the kids regarding subs in the classroom - I doubt that all schools will be as positive an environment for subbing.

I have also kept my eye on the postings at the University of Alabama.  I groan inwardly thinking about all of my great science teaching stuff gathering dust in the garage, but maybe God wants me somewhere besides the classroom.  Nothing has jumped out at me yet, but I will keep looking.  

So prayers would be appreciated as I try to sort through the possibilities.  And if you are a reader from the Tuscaloosa area with job ideas for me, feel free to comment!  

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