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!