Skip to main content

Meltdown


Silas is certainly at the "sponge" age. He can repeat just about everything I say. When he has his little meltdowns, I simply say, "Okay, go ahead and have a meltdown right there, that's fine." Now, whenever he doesn't want to do something, he simply sits down and calmly responds, "Mommy meltdown right here." He's certainly missing the definition of a meltdown, but he's smart enough to recognize that we all have a right to a meltdown now and again.
I exercised that right yesterday. After holding myself together for quite some time, I was utterly lost after an extended phone call with one of Levi's doctors. Without going into all the complicated medical details, let's just say that Levi is a big question mark with regard to his apnea. Thus, there are plans for him to see a neurologist, another ear, nose and throat doc, a plastic surgeon, have a sleep study, a swallow study, and still try to figure out if he has a bladder infection while I abstain from all dairy products until told otherwise. Did you know chocolate is a dairy product!?!?  What!?! At least I drink my coffee black for goodness sake!
After throwing my phone, letting out those deep, belly sobs, and kicking the basement walls until my foot couldn't take it (not just because of the dairy restrictions of course, but from the overwhelming amount of information), I took a deep breath and went upstairs to tend to me toddler, who thankfully had been asleep right up until my last wall kick.
Again, my amazing partner through all this reminded me that Levi is a question mark because in reality everything is a question mark until God reveals the truth to us. I love you Matthew! None of us believes anything until our eyes are open to it. We can't expect the doctors and nurses to give us all the answers when they are really not in control in the first place.

The great news : Levi is down to level 6 on the Cpap Bubble (once at 4 he should move off the bubble again). Also, he has not had any episodes in the last 24 hours! I held him for an hour today and relished in how well he looked.

We are hopeful today that with less poking and prodding, Levi will surprise everyone by not needing any of the surgeries that were mentioned if he doesn't improve.

Please lift up our baby boy:
- His bladder and bowels - if he has a simple UTI, I actually get to eat dairy again. If not, I'm off it for a while. Yet we don't want him to keep getting infections either.
- His body's ability to respond to so many different meds and antibiotics.
- His voice box- the ENT noted that there was little movement which can cause a host of other issues (my motherly instinct actually warned me of this three days ago. He can't make any sound while on the vent, and I began to worry about his voice because he's been intubated for so long. My concerns were just confirmed. Please pray his voice heals these next two weeks before the ENT returns.)
- His jaw/chin- a plastic surgeon said both are small, but not the smallest. Waiting to see if he can learn to swallow before taking a surgical route.
- His brain- Doc wants to do another MRI soon so that a neurologist can double check results and cross out any serious developmental issues from the list of possibilities.
- His hand and feet. The least of our concerns right now, but always important to cover them in prayer for mobility and growth in the future.


While we are so thankful for medicine and science that have helped keep our little Levi growing at such an early age, sometimes they can also be a curse. There are so many things that we know today, which force us to over-worry and over-evaluate. Hoping and praying that he just needs some love, prayers, and rest.

God bless you all!

~Milk-free Buster

Comments

Popular posts from this blog

Hard waves

Heartache and hard times seem to come like heat: in waves. Right now, I feel I have escaped the wave. I feel a sense of respite and relief. My world doesn't seem to be hanging in the balance of the next uncertainty. However, I feel the wave around me in the lives of others. It feels as if I'm sitting in the middle of my sweet autumn breeze while I'm hearing story after story of diagnosis, loss, and turmoil. Once upon a time, I would anxiously pray and wonder when my time of turmoil would next hit, but I've had my share of storms since then. Now I can praise God in good times, knowing the hard will come again. Instead of living in fear, I feel assurance that I will again experience respite and joy, and one day all my sorrows will cease when I leave this body. There's no sense in trying to avoid waves; if you have someone bigger, who created the oceans, then you can live at a level of ease no matter your circumstances. When I hear of these hurts, my heart hurts too, b

Confessions

I have had so many people thank me for my honesty on this blog lately. I haven't really thought about my level of truthfulness until those remarks of gratitude were given. I think I naturally wear my heart on my sleeve, and thanks to my upbringing, I often hear the term TMI, which just means I'm obviously not scared to express myself. However, I also believe that when you are going through something difficult, it's much easier to be raw and real in front of others, even complete strangers. Often times, it is these "real" moments that bridge the gap between hearts and allow us to live truth. I must confess, this marathon is really all over the place. It's like I hit mile 7, and I can't believe I'm only at mile 7! This past weekend, I felt covered in prayer, peace, and love. Matthew and I enjoyed a much needed date night, our little Levi enjoyed a quiet and restful weekend, and our big boy had a blast at our neighborhood Easter Egg Hunt.  I really ju

"His legs flail about as if independent from his body!"

If you are a "Friends" watcher as I have been known to be, you will appreciate that quote. I am getting to see the Chandler Bing's greatest fear--Michael Flatley and the "Lord of the Dance" performance. I am so excited! I've seen a lot of different types of performances in my lifetime (even the gravely strange or soberly artistic modern dance shows), but I've never seen an Irish Riverdance! My mom got tickets for us back in October for my birthday. She is so astute and thoughtful! In case you aren't familiar with "Lord of the Dance." Here is what Wikipedia has to say about Mr. Flately's Dance: "Lord of the Dance is an Irish musical and dance production that was created, choreographed, and produced by Irish-American dancer Michael Flatley, who also took a starring role. Michael Flatley found his first fame starring in Riverdance, but he left the show in 1995 before its debut in London after a disagreement over creative control. F