It's a Scooter Bug's Life

HEEELLLLO, OUT THERE, GREAT BIG WORLD...Will here. Yeah, I know, it's been awhile. I've missed you! The parental units haven't been holding me hostage or anything but they have been hoggin' the laptop. (I know what I will be asking Santa for this year!) And, well, in addition to the craziness of doing a second round on the super specialists circuit, we have been busy moving in to our new place.

So, you may be wondering - or not - if I am going to talk about a bug's life today. I have been thinking a lot about them. How they live each day as a big adventure, worrying not about being squashed or flying randomly into a windshield or eaten. How they take care of their fellow bug (well, except for those who could eat them or that maybe they wish to eat?! hmm...) and live happily in community. How even though they are small they can have a big impact. Oh yes, bugs are fascinating - aren't they?

Well, I am guessing most boys dig bugs...but would most want to be called Scooter Bug? and do their moms dress them in "Bugwear?!" (see above) Thus, the real inspiration for today's blog. I am in need of a new nickname and a new wardrobe...and maybe even new parents. If you recall, my NICU nickname was MOOSE. Quite manly sounding - huh? and with my name there are a lot of cool ones you can come up with...William, the Mighty Warrior! or Wild Will (not Willie of course...Mom would shoot you) or Braveheart! Afterall, I am named WILLIAM WALLACE! But no...Dad calls me Scooter Bug and mom...oh...let's not even go there...sometimes calls me Snuggle Puppy. SERIOUSLY?! Who are these people? SP isn't even creative...she stole it from a book we read together! And then to top it off she buys me this outfit which might have been okay if it hadn't included a giant felt bug plastered on the bootie!

So, while we are talking about Mom and Dad...it turns out that there is only one thing I have from their BAD genes. (Certainly have lots of their good ones!) Yes, I have a seriously bad (not bad in a good way but bad) cowlick. And not just any ol' cowlick but a right-down-the-middle-awful-80's-style one. Let's hope that look comes back. Until then, I see lots of hair gel in my future. A muscle biopsy - OUCH! - could also be in my future to rule out other bad guy genes but no word yet on that.

TUMMY TUCK!!!!!!!!!! I knew that would get your attention. So, yeah, I know some of you have seen my belly and have thought "why don't you just lay off the bottle for awhile?". At the same time some of you Moms out there are just cooing "ohh....but baby bellies are so cute!" Yep, certainly not trying to change that trend but would like to get my belly a little more...hmm...round...um...stable...usable? I know flat is in but when you only have 5 pack abs (where, oh where, did that 6th one go!?), you gotta get a little help. (yes, you read that correctly, I am actually missing some of my left ab and have a thin left wall. Weird, I know. If you happen to know a doctor who specializes in tummy tucks for tots...let Mom and Dad know. They are in the market for one)

On a happy note (not that missing a little ab is a reason for doom and gloom or anything...was just looking for a transition), I am breathing 100% Texas spring air. Yep, my buddy (literally, he is my buddy because I stare and smile at him and his tank often, much to the surprise of my parents), Mr Oxy, will be going back to his own home soon. I have been Oxy-Free for almost a week now and I FEEL GREEEEAT!

So, that's it. I am one blessed Scooter Bug. Blessed by God to celebrate another day of life as well as blessed to be surrounded by amazing folks like you. Thanks for your prayers. Let me know how I can pray for you as well!! Will update again sooner rather than later. I promise.

Will

PS - the pics below that are super good...the ones that look all professional - all touched up (except for my hair and Mom's hair..grrrr) were done by my buddy Scott Wade. Look him up, he's a big deal. Does celebrities and whatnot. And if he can make me look that good, he can do the same for you.

oops...forgot a picture (Scout was bummed out about not being included)

POSTING MANIA! (Double the Pleasure...according to Mark)

um, so we were both writing for the blog at the same time...great minds, er...random, discombobulated minds...think alike.  So check them both out but please do not post about whose you liked better (mine of course because it has pictures!)
- Dana

Just For Today

When I am tempted to wallow in worry or am fretting about the future, a wise counselor and friend often reminds me to slow down and to think about how I am going to live "just for today". "Just for today, I will..." You can fill in the blanks. You see, today is all that we really have and, honestly, we may not have the whole day (oh goodie, does this get me out of my doing the laundry and dishes?!).

Matthew reminds us of this in his 6th Chapter when he says "But seek first His kingdom and His righteousness, and all these things will be added to you. So do not worry about tomorrow; for tomorrow will care for itself. Each day has enough trouble of its own." (AMEN, brother!)

I like how the The Message states it so plainly - "People who don't know God and the way he works fuss over these things but you know both God and how he works. Steep your life in God-reality, God-initiative, God-provisions. Don't worry about missing out. You'll find all your everyday human will concerns will be met. Give you entire attention to what God is doing right now, and don't get worked up about what may or may not happen tomorrow. God will help you deal with whatever hard things come up when the times comes." (Double AMEN!)

I'll be honest, there has been quite a bit that I could (and sometimes did) worry about over the last 3 months. Even more so being home with Will the last 3 weeks in the midst all the uncertainty surrounding his health ("um, God, am I really supposed to be home alone with a kid hooked up to loud monitors and an oxygen tank!?!") His diagnosis runs the gamut from "slight chance that it's nothing at all" to "possibly fatal". "What, God?! Are you asking me to TRUST you with this? All the uncertainty? All the "what ifs"? An outcome that could lead to death and not life? WHAT?!" Yes, sometimes it just seems easier to whine to God than to suck it up and believe that He truly will take care of our today AND our tomorrow. Lately, I have been choosing the latter and I confess it is a much more peaceful and powerful way to live. So, I thought I would share my "JUST FOR TODAY" list with you in hopes that it my spur your own...and, well, share some of our GOOD NEWS.

Just for today, I will...
+ Celebrate Will's recent test results...both the genetic test and two neuromuscular disorder specific tests came back...NEGATIVE
+ Praise God for who is - sovereign, merciful, creative, generous, AWESOME
+ Thank God for giving me an amazing husband who loves me and Will well and who stays up to do the late night feed so I can sleep! :)
+ Sing "Texas, Our Texas" (hmm...may need to look up a few of the words since Mark and I coudn't get it through it last night!) in honor of Texas Independence Day
+ Enjoy the sunshine and watching Scout lay out in it!
+ Dance around the nursery with Will and give him sweet kisses on his peach-fuzzed forehead
+ Eat a whole box of Thin Mints and not think about my diet (oops...this was yesterday's)
+ Remember all that God brought me through in my first 5 months of life and pray that he will do the same for Will.

Most of you know that I am adopted but you may not know that it took 5 months from the time I was born to the time I was actually placed with my new family. During that time, I was in foster care while being tested for Downs (back then it obviously took much longer!). It is often said that many adoptees feel abandoned or rejected and judging from the 5 months of my own life it would be easy to see that but God had incredible plans for me. And those plans required details like prompting my Mom and Dad to fill out adoption paperwork (this happening only a month or two before they got me!) and the agency choosing to place me in a Christian home - all this after saving me from an abortion.

I think back to how I met Mark as well, with God prompting me to meet my community group gals after church for lunch (yes, I know it's hard to believe He did that but He did...I am not a fan of group lunches!) and leading him to ask me for coffee. This of course leading to a new job...and down the road, a fiance!...in Austin. Never in my wildest dreams could I have imagined a story playing out as it did...especially after one of the hardest years of my life.

My point? God is in the details. God is faithful. God is GOOD. He has our today and, if there is a tomorrow, in His hands. We can rest. We can LIVE fully - even if it is JUST FOR TODAY.

Thanks for listening. Obviously I am long winded...and certainly not as creative of a writer as my son...but I felt moved to share what God is teaching me. Thanks also for your prayers. I believe that God hears them, giving us peace in the midst of the chaos and strengthening our faith.

PS - Please keep praying for Will. He will undergo a fluoroscopy this Friday and will be meeting with both the neurologist and orthopedist next week as well.

Great News!

For all those who have been following William's progress and praying for his health, we have some great news to share today:  The special chromosome and genetic tests have came back negative!

We praise God for this great news!

One month ago, William was seen by a pediatric geneticist and a pediatric neurologist.  At their direction, he was tested for myotonic dystrophy and spinal muscular atrophy and a chromosome microarray was conducted.  The chromosome microarray, a recent advancement and an excellent tool for determining any genomic errors, provides a closer look at the chromosomal length and pattern to determine if any disorders are present.  You can read about the two disorders by following the links.  I'll paraphrase by saying that they are nothing you would ever want any child to endure.

So, you might be thinking, where do we go from here?

Well, first we thank God for today's blessing and then we ask Him for continued grace and healing.

I realized something several weeks ago while Will was still in the hospital: no child is perfect.  Even the vast majority of children born without health problems are not perfect -- and they never will be!  No guarantees exist for a lifetime of excellent physical health.  In our fallen world, health today can easily succumb to sickness or death tomorrow.  Likewise, apart from Him, we are spiritually dead!  And that is more significant!  Our son was going to need Christ and his offer of eternal life whether he was "normal" or not in the exact same way each of us need Him.  (See Romans 5.)  So, while hopefully Will's health will be better than it could have been otherwise, he still is in need of Christ.  But, that is something of eternal significance and much greater value than our physical condition on this Earth.  Of course, it was a good parenting lesson.

Second, we let the doctors keep exploring.  On Friday William undergoes a flouroscopy to observe his diaphragm function because the pulmonologist wants to determine the casue of his increased respiratory effort.

Please pray for continued healing of his respiratory system and that is chest would keep growing so that his breathing is less labored.

We apologize for the lack of news as life has been a little busy of late.

We thank you for your prayers and hope to have more news to share soon!

Also, I'll get Dana to upload more pictures.

Super Sunday

Goood mooorning, Auuuustin! Will here, live from Da Crib. Yep, that's right, Baby Whisperer and his Super Sidekick let me go home.  (Well, Sidekick was a little hesitant - okay a lot hesitant as Dad had to pry me from her fingers - but only because she loves me so much and has what some of the NICU kids call "Attachment Disorder.")  She begged me to come visit her and I promised I would.  Besides, my buddies, Braden and Reece, are still there, and all my favorite nurses.  (Pray for them as they have a HARD job...all that poopy diaper changin' and spittin' up and whatnot.  Pray for my buddies too that they will get home soon).

55 days in the ol' NICU...but who was counting?! Okay, so my parents and grandparents...and all of you who have been praying for me.  But I was never worried...God took good care of me.  Still is.  Now my parents...well, they look and smell a little weird...like maybe they haven't bathed or slept in a couple of days?!...but they are looking after me fairly well.  Although, I ask you...where is the breakfast love? They are downstairs having sausage and eggs while I get milk?!  Okay, I digest...or is it digress?  (Mommy is teaching me all kinds of big words!)

Sooo...back to CELEBRATING all that God has done...and will do.  He has been so faithful to me.  When I am fearful, He reminds me not to be and to enjoy the blessings He has given.  Sometimes I have to remind Mom...you know how Moms are!  I think she worries some because I still have some help with my breathing. (Okay, but seriously, is 1/8th of a litter of oxygen even worth all of this equipment in my playroom?!!  A boy needs the freedom to build, to explore, to be a mighty warrior and slay giants!)  She also said something about one test involving my gigantic muscles and another one that is all about counting strands (I can't count very high yet so they had to send it to someone who can)...um, was that what all that blood taking was for?  Whew, that wiped me out!  Well, we should know something about those real soon (2-3 weeks?)...keep praying please.  Until then, I have lots of fun appointments to go to (don't they give free suckers at all these places?)  Five doctors to see isn't too many - is it?  I must be really special! :)

Oh yes, before I forget...I know you have been wondering how the Big C went.  Yep, it happened and I took it like a man.  Didn't even cry.  The Weenie Whitey in front me though peed, pooped, and threw up on himself.  Not good.  Dad stood by me until the end.  Okay, well, when it was over, he did look a little woozy and sat down for a bit.  He said that I could tell you that and you would understand.

Some of you have also asked about my big sis, Scout.  She's doing well, although seemingly bitter about all the attention I am gettin'.  She hasn't licked me yet but I am thinkin' I might lick her - just to show her that we can be buddies.

That's it. I will just be hangin' at home with Mom and Dad since Baby Whisperer said that I can't have playdates for awhile.  Something about some nasty virus going around?!  It should be gone by summer though so have your peeps call my peeps and we'll play!

-Will

PS - I begged Mom not to post this nudie pic of me but she said that this is the only time in my life that I can be fat and wrinkly and still be completely adorable naked.  Please do not share with friends, post on the internet or sell to People magazine without my permission. (I should at least make some spending money on it if you do!)  And, yep, crocheted camo hats are HAUTE! (hot in that it keeps my head warm! don't laugh -some sweet old ladies at Dell Children's made it for me.)

The One True Specialist

If you have seen the recent tweets in the lefthand column of the blog then you know that William had a bronchoscopy performed Thursday morning. The good news: The procedure went well and the pulmonologist was pleased with the immediate findings. A small sample of lung tissue was taken to study further and to detect any possible infection. We should know more on those results later.

The bad news: Since the lungs appear to be anatomically normal, it led us to also meet with a neurologist and geneticist. Our neonatalogists have dicussed the need for these consultations for several days, so it was nice to go ahead and have them while we were at the same location as those specialists. Basically more tests (MRI, genetic blood testing, skeletal survey, etc.) will be conducted in an effort to determine why his breathing ability seems to be inhibited and if his muscles can perform properly or whether his condition is simply due to his prematurity.

It has been a long few days filled with uncertainty, fear, sadness, prayer, pleading with the Father for healing, and in the end hope in the resurrection and the eternal.

Several years ago, when John Eldredge wrote his book "Waking the Dead," he focused on this statement from Jesus in John 10:

The thief comes only to steal and kill and destroy;
I am have come that they (his sheep or disciples) may have life, and have it to the full.

Also, later in I John 3, the disciple says that Christ came to destroy the devil's work.

This reality has never been more true to me than now -- Satan REALLY wants to harm me, my wife, my son, and remove anything that's a blessing from God in this world. He isn't playing around and he doesn't care how it occurs or whom it injures. For him, the more death and destruction, the better.

So, we turn to God through the gate of our good shepherd and protector (Christ) for he has the authority to lay down his life and take it up again -- and praise God that he has done so! He will use this same authority one day for me and my family to raise us up again. In the meantime, the Father, the Son, the Holy Spirit and the church love and comfort us. And for that we have no words.