Thursday, March 31, 2016

Keeping Track

Keeping track. In many cases, an important capability. Keeping track of loved one's birthdays, keeping track of meetings or appointments; keeping track of your finances-- there are many gadgets and products available today to help us keep track of life. I know social media like Facebook and Instagram can keep track of everything you've done for the past decade via photographs. The Fitbit keeps track of your steps, sleep, and health among other things. Of course our Smart phones keep track of our lives with daily notifications. While these are all helpful, I wonder if we are keeping track of too much. Does keeping track hinder us?
It seems like we are afraid be "in the dark." I know there's probably a reoccurring theme on this blog (which, I recognize, helps me keep track my own thought process and family photos), involving our desire to be God. We want to know EVERYTHING. The learning process is essential to mankind's growth as a species, but I think we need to self-examine in order to understand whether the information we are seeking to dominate is actually bettering us or creating bigger problems.

From personal experience, I can tell you that each of my children has helped me keep track of less. I'll admit, I once kept track of how many hours of sleep I got each night, how many bottles of water I drank each day, and how many miles I'd run a week. Once Silas and Levi entered my life, and once Kyra left my life, I let go of trying to keep track of everything and everyone. I was forced to focus on only the things that truly mattered. Living "organically" to put it in modern terms.
I think we all come to this realization at different points in our life, but if we aren't cognizant of it, we'll fall right back into hyper involvement tracking mode the second life gets back to "normal."  We can become so dependent on those products that give us up-to-date information on what's happening to ourselves and those around us, that we forget what it means to be intuitive.

Let me explain. I'm not knocking devices that help make life easier (I certainly own a Smart phone), but when we rely too much on them and obsess about the info they give us, we begin to let them dictate our lives. Oh no, I will be tired because I slept poorly. Oh no, I missed out on another birthday party, I'm growing apart from my childhood neighbor. Oh no, I haven't walked enough today, I'm going to get overweight. While these may be exaggerations in most cases, I'm sure they are accurate in other cases. We have to give ourselves the freedom to feel and do whatever comes naturally, not what our schedules and timelines tell us.
Again, this blog is certainly a blessing as it keeps track of all the pictures I never upload anywhere else, but I hope I never become someone that has to keep track of everyone's blog to know what others are thinking. We have to be able to talk face to face with those we love in our lives.

I have been forced to track a new substance though: Levi's food. Now that he's eating more purees, we have purchased a food scale in order to know exactly how much he ingests by mouth. While it's usually less than an ounce, we continue to thank God for his steady progress!

Also, Levi's neurological eval went great! Thank you for prayers! From an external evaluation, they found nothing to suggest he has any neuromuscular disorders. However, they do want us to potentially do one other non-invasive exam involving little muscle shocks and acupuncture in order to rule out every other minor possibility. He'll also get one last brain MRI when he turns two that will show us whether all his fatty tissue around the brain developed properly. I can tell you that I'm grateful doctors can keep track of every possible disorder evident through technology. While I wish we could depend on simple Mother's intuition, I thank God for all that is available to us to help Levi grow to his full potential. We are truly blessed More than that, I sat in the Children's Healthcare Muscular Dystrophy clinic in utter gratitude. There are so many people walking much harder roads than I've ever had to encounter, and most of the time they do it with pure joy. It's been a gift to be part of such a community.

While I neglected to keep track of a family Easter photo, we had a great weekend!



Levi, what do you think of your first library story time?

Is that where we are? I just thought it was another fun waiting room.

Well this is great then!
~Tracking Buster

Wednesday, March 23, 2016

Be leery of your standards

"It's hard to lose when your standards are so low." (John Simone Sr.)

I am all for high standards, especially when it comes to who my children will marry, how they conduct themselves as gentlemen, and what they absorb into their hearts and minds. However, when it comes to daily life, we have to be careful what standards we grow accustomed to in our lives. In other words, it's easy to get used to a certain lifestyle or routine, but when it changes to one we consider a "down-grade," that's when it becomes difficult to adjust.

Whether we are talking about restaurants, shopping, sleep, or independence, once we come to expect certain modes of operation, the lesser, inconvenient forms are no longer acceptable. No matter what our paycheck says or where we call home, I hope that my family can maintain a simple lifestyle that is modest to say the least. While it's easy to say these things when thinking about the unknowns, like the potential loss of money, health, or time, I didn't see the correlation to Levi's eating until recently.

After making all the G.I. changes a couple weeks ago, I have spent lots of time cleaning up constant projectile vomit (sorry if you just ate). This was our normal M.O. most of the last year, but after two good weeks without spit up, I was ready to unload when he began the same old "end of meal sickness" routine. Then I recalled how "normal" it used to be, and that it hadn't phased me. How had I adjusted so quickly to a new normal? Likewise, I'm quite used to life without a monitor or leg casts. I need to remember these wonderful new norms when I get a little sick of sickness.

Since Levi is back on his old inhaler, no longer dealing with a sinus cold, and finished with ear-tube surgery, I am hopeful and excited to appreciate life in the future without constant spit up. Regardless though, I must always be prepared to adapt to a lesser M.O. while still maintaining my simple appreciation for the present circumstances, knowing that it is pretty easy to change our standards either way.

Silas helping clean up a late afternoon spit up. (This is not forced labor, he actually requests this duty!)
Love that Silas finds joy in a "mommy/Silas date" to Fresh Market.
Levi was a pro at being under the knife!

Although very delayed effects from anesthesia made us all a bit scared.

Thankfully having a feeding tube forced pedialyte into his system and made him all better! His first Popsicle didn't hurt either.

Look who is obsessed with his new "big boy bed!"

So far we haven't grown much, by the animal foot prints are making me a bit nervous. Our owl, "Hootie" doesn't seem to be scaring anyone.

Loving spring with these boys!

Thank you for your recent prayers! Please also lift up Levi this Monday as he has his (hopefully last) Neuromuscular evaluation to check off that he doesn't have any neurological issues from being so premature!

Lots of love!
~Standard Buster

Wednesday, March 16, 2016

Trophies

I kid you not, he's reading an Accounting magazine.

Love our Resurrection Garden tradition

Just as I was about to lose it with exhaustion on a Saturday pancake disaster, my little man put on some glasses and reminded me it was no big deal.

Look who's trying to grasp with his weak hand! (I sat him up though...not quite to the up and down on our own yet.)

I heard a quote recently that really stuck with me. "These days, people wear busyness like a trophy." Isn't that the truth? I have to say that I was sold into this gold. Not long ago, if I didn't have something planned for every hour of the day, I felt like people would view me as lazy, unimportant, or even out of touch with society! I know most people would argue that spending our time wisely and taking advantage or every opportunity is the American dream, but I'd have to say I think we are just afraid of what others might think, or worse what we might discover about ourselves if we slowed down long enough to be still and reflective.
I'm certainly the last person who would advocate gluttony or laziness, but I think there is a beautiful balance I've been forced to embrace these last few months with my boys. There is a huge difference between busyness for the sake of busyness, and advocating priorities. Just because social media makes our world seem ever populated with eternal connectivity, doesn't mean we are missing out on life. It's okay to excuse ourselves from some of those pressures that we place on ourselves.

As my family begins to emerge from our sanitized coma into the beauty of Spring and blessing of community, I pray that I can continue to know the difference between being a "part" of everything, and being a part of something meaningful. I think we can all benefit from a time of stillness every single day (not television, phone, or some other still activity, but no activity at all). Don't fear silence, because when you embrace it, it's actually rejuvenating.

Thanks Gibby for coming to celebrate Levi!

When one person gets a new toy, others struggle to be happy for him.

A few neighbors and family helped us remember our little Levi's great birth!




While we've taken a few steps backwards with the spitting up and eating, I know that we'll get there eventually. Levi's most recent achievement is holding a small object in each hand and clapping! You're amazing Levi.

Please pray for his simple ear tube surgery on Monday and the ability to keep his meals down! Thanks so very much!

~Trophy Buster

Thursday, March 10, 2016

Happy 1st Birthday Levi




Before you get too excited, Levi isn't really eating a cupcake, but he did try a little frosting and loved the shiny wrapper of course! His first birthday came with doctor's appointments, a head cold, and lots of love and kisses! He's a trooper to say the least, and what most kids would get upset about, he sees as a piece of cupcake compared to what he's been through.
Matthew and I reminisced on the past year in awe of where we've come from and how we got where we are today. It's only by the grace of God for sure. There's no other way around that fact. We couldn't be happier to celebrate simply that our second son is alive and by all comparisons very well!

A quick update:

Levi still isn't past the 7th percentile  (for weight/height ratio, he's only in the 2nd percentile for his age group based on weight), so we made some feeding changes that will hopefully keep us moving in the right direction. Although, the good news is that he's continuing to eat pureed food by mouth, and doing great with all his therapies!
We finally made it to the ENT. After a very extensive appointment, we've come to the decision that Levi needs tubes in his ears, despite the fact that he's never had an ear infection. He has so much fluid in both ears that he failed part of his hearing test. We are hopeful that clearing out his ears will help with a lot of the mucus he struggles to manage in his respiratory system, which in turn affects much of his other issues. He'll undergo that surgery in two weeks. 

Thank you so much for prayers and love!

Happy Birthday Levi! We celebrate every single day that you are home with us bubba!

~Coffee CubBuster

Tuesday, March 1, 2016

A first birthday letter

I remember planning Silas' first birthday party at a park just a couple years ago. While it was a very low-key party, all things considered this Pinterest age, I have a different "to do" list for Levi's upcoming birthday. Praise God it only includes a few things: visit hospital with flowers for all those who kept Levi alive and growing, thank God and everyone else I can who supported us this past year, reminisce and kiss my little boy as much as I can, and write Levi a birthday letter.

So my littlest man, here's a letter from your adoring momma: 



Dear Levi,

I am utterly amazed at what God has brought us through this past year. As we get ready to celebrate your first birthday, I can't help but feel like this is more than a celebration of birth. Your birthday is a celebration that deserves more than just one candle, more than a great themed party, more than balloons and a smash cake (which my sweet son you'll have to patiently wait longer to enjoy), more than a few friends or some new toys. Your birthday marks a moment in our family's history similar to reaching the moon, witnessing your first shooting star, graduating from high school, or maybe reaching that 100th jubilant anniversary.
While mothers tend to inflate reality with loving bias, I am quite certain more people than you have ever come in contact with this year would agree with my description of your special day because they've lovingly prayed for you these last 365 days.
I can't begin to thank God for your life. Looking at your traumatic entrance into this broken world with your frail and broken body, I can only speak to the miracle that you are today.
Your life has been anything but typical for an American infant. You never nursed or took a bottle. You were swaddled maybe twice in your little life. You didn't take a full bath until the age of about 8 months. You have never soothed with a thumb or pacifier, nor did you cry more than a whimper until around 6 months of age. That was also around the time I first saw a glimmer of a smile. You have never crawled, but your beginning to laugh more every day, which I think is by far more important than crawling. You've said nothing more than an infant's coo, but your beginning to speak through repeated gyrations, so I know we speak the same language. You have spent almost equal the amount of time in our home as you have in doctor's offices, but you are probably the most easy-going patient I've ever met. I can tell how much you love and appreciate being alive, and baby boy, the feeling is mutual. It's taken a village to pray and treat you into the growing boy you are, and we can't begin to express our gratitude to everyone of those people.
I cannot wait to see what other miracles our Heavenly Father has in store for your life because it's already been extraordinary. As hard as the hard days have been, it's made the sweet days that much more sugary. I know I can be impatient at times, and watching you continue to get frustrated with your limitations is heart-wrenching, but please know that I don't ever want our lives to be "normal." Remember where you've come from. Remember that once upon a time you had an oxygen tank, heart monitor, regular injections of steroids, a dictionary worth of medications, legs casted to your diaper, your hand in a permanent splint, and IVs covering your body.
Levi, we all love, adore, and praise God for you. Happy Birthday bubba! I love you!
Momma.



~CB