Sunday, February 4, 2018

Searching for a Diagnosis

Yesterday I did something that I never thought I'd do; schedule an MRI for my baby's brain. I was also advised this week that I need to set up an appointment with a geneticist at UAB where Ezra will undergo genetic testing and likely receive a skin biopsy.

I keep this part of his life pretty private so you probably know nothing about Ezra's medical concerns, but I've focused on little else for the past 8 months. Heck, even before Ezra was born, there have been concerns about him. I had gestational hypertension and low fluid levels during my pregnancy and was induced 2 weeks early. Ezra had a low birth weight and failed to thrive from the get-go (we wouldn't find out until January of this year - when he was 14 months old - that he has both a lip tie and tongue tie... no wonder he was FTT) and it seems like every month or so we encounter a new - usually unalarming - setback.

To start with, he has hyper-pigmentation aaaaall over his body. In fact, when I held him for the very first time, I panicked thinking the nurses had cut his stomach. It looks like he has a scar going straight up his tummy. He's also "striped" on both legs, his side, and his shoulder, including various whorls and splotches covering the rest of his body. We lovingly refer to these as his "racing stripes" LOL!

This isn't Ezra, but his skin is very similar. The only difference is the contrast of Ezra's skin colors is much slighter. If you're not looking for it, you probably wouldn't notice it.

A month ago I learned that there is a strong relationship between the skin and the brain. In layman's terms, when a baby is developing in the womb, the brain and skin develop from the same tissue. So skin abnormalities can sometimes indicate brain abnormalities. On top of that, our little man has frontal bossing... another reason his docs think there might be something going on inside his noggin.

You can see in this photo that his forehead protrudes farther than normal.

He was also born with overlapping toes, had low muscle tone until 7 months, had tightness on the left side of his trunk, has been diagnosed with Global Developmental Delay and Sensory Processing Disorder, has cupped fingernails, and a rather large (adorable, fuzzy) head. He's been going to weekly physical therapy, food therapy, and just started speech therapy. We've met with a Developmental Pediatrician who ran a few genetic tests and has thrown out some scary terms like "genetic disorder", "mosaicism", "special needs", and possibly even "autism"... though it's all just conjecture at this point.

Any one or two or even three of those symptoms probably wouldn't have tipped us off, but at Ezra's 12 month check up, his pediatrician told us that, "I think there might be something bigger going on here. I think Ezra might have a syndrome or a genetic disorder... something that explains what's going on with him." Not exactly what I was expecting to hear when I walked into the pediatrician's office that day.

We were sent to a specialist who has been referring us to a million different places, it feels like. And if I'm honest... it all seems kind of pointless. Why should I put my son under anesthesia to get an MRI done? Why drive 4 hours away for a skin biopsy and even more blood tests? Why make my sweet boy go through this craziness when I'm perfectly happy with who he is. His delays and quirks don't bother me. If anything, I'm endeared to his individualism. He's one of a kind in my mama-eyes and I wouldn't have him any other way. But I want him to have the best future possible and help him however he needs help... and to do that, we need to figure out what exactly we're dealing with.

At this point, I'm tired of playing Dr. Google and diagnosing my son. If we find out that he has a genetic disorder/syndrome, then that's great! We can tailor his care, therapies, expectations, and education towards that. And if we find out that he doesn't, then that's even better! We'll keep working to get him caught up with his peers.

So if you need me, I'll be over here just loving on Ezra every step of the way.

Tuesday, April 25, 2017

One Last Hurrah

I know I sound like a broken record, but Auston is deploying soon and my already mushy, sentimental personality has been kicked into hyper-drive. This has left me with the overwhelming need to intentionally enjoy every moment that I have left with my husband.

Talking with him while he feeds Ezra a bottle? Enjoy that moment.

Laughing at a chef on Chopped together? Enjoy that moment.

Exchanging a quizzical look over our Facebook friend's questionable status? Enjoy that moment.

Maaaybe I'm clinging onto every insignificant moment just a little bit too much, but I'm pretty sure that that's Army wife protocol. Either way, deployment or no deployment, I will always cherish a date night with my hubby. This past Friday we snuck out while Ezra was with a sitter and partied like young, hip, kids. And by 'partied', I mean we ate until we were uncomfortably full and were back home by 8:45.

When we got to downtown Pensacola, we found out there was an art festival going on. We walked around from booth to booth and sampled some yummy local food. Auston had tacos al pastor and we split a basket of fried pickles.

Rather than heading straight to dinner, we were rebels and had dessert first. I had the tastiest smore's, honey lavender, and white chocolate macarons and Auston had bread pudding.

My favorite part of the night was walking up and down Palafox Street and people watching. Auston and I took turns guessing other people's conversations. That game usually ended with me laughing way too loud and us scurrying away as fast as we could before someone noticed.

Then we ate dinner at The Tin Cow, a.k.a. the coolest restaurant ever! They have a super unique menu that lets you customize every single bit of your burger! Plus, they have delicious adult milksakes. They're so good that even I will drink them!... although, I could have gone without the alcohol infused cherry (gross!).

The Bushwhacker: 16 oz of frozen, chocolate, coconut, yumminess!

All tuckered out at home... at 8:45 pm. What can I say? We're young, cool, hip, cool, trendy, - did I mention cool? - thrill seekers.

On a side note, I asked Auston if I should title this post, "One Last Hooah" and he gave me the nastiest stinkeye! Bahahaha!

Tuesday, April 18, 2017

2017 Family Photos

I'm so glad we decided to take these before Auston deploys! They're all so dreamy!

Also, there is nothing more classically "mom" than picking out coordinating outfits for your family to wear for family photos. What can I say, I live an exciting life.

Tuesday, April 4, 2017

Red Empire Week 2017

Today kicked off 7th Special Forces Group's Red Empire Week! Ezra and I joined Auston on base and were given a sneak peek into some of the cool things that the soldiers do. There were about 2 dozen tanks that we were allowed to climb in, live dog demonstrations, machine guns that we could shoot (without ammo, of course!), and tons of booths to visit.

5 soldiers Halo jumped from 10,000 feet in the air and landed on their feet. No matter how many times I witness this, I will always be blown away that they can hop out of an airplane and walk away unscathed.

Auston and I have been ships in the night as he gears up for deployment. I assumed that the Army would lighten his workload or give him some time off before he shipped out, but I was sorely mistaken. The past few weeks, he has had to show up earlier, stay later, and often goes days without seeing Ezra. Since that's the season of life we're in right now, I'll take family time any way I can get it.

Oh, and you can blame Auston for the Patty Melt sticker on Ezra's forehead. What can I say... dad's gonna dad.

Thursday, October 20, 2016

Ezra's Birth Story

Ezra is now 7 days old and has stolen my heart a million times over! How I love my sweet, itty bitty baby boy! Before I forget all of the important, precious details, I should probably write my birth story down.

Wednesday, October 12th I woke up around 5 am after getting nowhere near enough sleep. I felt panicked yet catatonic. There was a tornado ripping through my head, heart, and gut yet my body was frozen solid. I stayed in bed crying and watched The Office to distract myself until around 9 am when I couldn't take being hungry any longer. I ate breakfast and tried to coax myself to do something useful (like pack for the hospital!) but I ended up calling my mom instead. I sat on the floor of Ezra's nursery and packed a small bag for him. I eventually ended up lying down and watched another episode of The Office right there on the floor.

Auston got home from work at 3:45 pm and he changed out of his uniform while I did my hair and makeup... yes, I did do my hair and makeup to go deliver a baby(; We held each other, we prayed, and we cried. A lot. We were totally unprepared for what was coming at us at lightening speed.

We ran a few errands to kill some time since we weren't supposed to check into the hospital until 7 pm. We shipped some packages, dropped some items off at Goodwill, and drove to Niceville for our last dinner as a family of 2. You might think we would want something nice to celebrate such a big occasion, but all that I wanted was Panda Express, so that's what we ate. Somehow we missed all of the normal evening traffic on our drive to Niceville so we still had over an hour to kill even after eating.

Rather than sitting in a Panda Express for an hour we drove onto base and parked at Post'l Point and watched the sunset (and an episode of Chopped on my phone!)

We're not normally the "kissy pic" type of people... but it just felt appropriate(; this was us parked in our car at Post'l Point just minutes before checking in at the hospital.

Around 6:45 we started driving across Eglin Air Force Base and checked in at the 96th Medical Group. I soon had an array of monitors and wires connected to me. My balloon dilation started at 8:50 pm and if you've never experienced a balloon dilation before, it is only marginally less painful than childbirth itself. Seriously, it was hell. Since my pelvis and spine both felt like they were splitting open, I didn't sleep much. Mostly I shook, cried, screamed, and tried my best to breathe.

The next morning, Thursday, October 13th, the balloons were removed exactly 12 hours after insertion. By that point I had dilated from 1 cm to 6 cm and quickly went to 7 cm by 11 am.

I opted for an epidural, which ended up being a spinal tap because the anesthesiologist stuck the needle too far. Unfortunately, because I had a spinal tap, my medication wasn't on a drip and it had to be administered to me every so often. I was told that my pain should be around a 3 or a 4 so I could feel my contractions but not so much that I was already exhausted by the time it was time to push. From 11 am to 5 pm I was fine.

At 6 pm, my back labor started kicking in. The only way I can describe what it feels like when your baby is sunny-side-up is that I imagine it's the same as a bus hitting your back. I kept begging the nurses to get the anesthesiologist since my pain wasn't supposed to exceed a 4 but was now around a 12, but I was repeatedly told to suck it up and breathe. Eventually after hours of the most intense pain I've ever experienced, they finally called for the anesthesiologist and he gave me a high dosage when he saw how hysterical I had gotten. Within minutes it had started to kick in and I could finally focus on breathing through each wave of pain.

After being in transition but stuck at 9 cm for hours, the doc came in and told me that I needed to dilate to 10 cm within the next hour or they would do a c-section. I thought that there was no way I'd ever dilate quick enough, but God was gracious and when they checked on me an hour later, I was fully dilated!

That was 9:50 pm. By 10:10 pm, my legs were in the stirrups, the doc came into the room and I began pushing. At 10:45 pm on October 13th, 2016 Ezra Knox was born exactly 2 weeks early weighing 5 lbs. & 10.5 oz. He was 18.5 inches long and perfect! When he was born, the doc found out that his umbilical cord was wrapped around his neck twice. Since Ezra didn't cry when he came out, he was immediately taken over to the heated isolet to clean him off and make sure he was okay.

I remember watching from the bed as Auston cut the cord and listening to him cry as he called out, "He's holding my finger, Mary!"

The recovery process was pretty brutal... I was asleep almost all of the 2nd day of Ezra's life. Auston had to help Ezra nurse on me and pump for me, because all I could to was throw up and then pass out. All in all, we were in the hospital for 5 days.

Ezra is tiny and sweet and perfect in every way. I am so blessed to be his mommy!

Tuesday, November 10, 2015

God is good even when your house smells like rotting fish

Today has been one of those days. As I write this, it's only 10 am but it feels more like 5 pm; otherwise known as quittin' time. Because that's where I've been at today; feeling like quitting.

I woke up early, excited to finally have a day off. I had made plans to accomplish a laundry list of tasks since I finally had some freetime. On my agenda was yoga and breakfast with friends, getting my recalled airbag fixed at the nearest Honda dealership, running some errands that I'd been putting off, cleaning the house, and dumping my waterlogged nightstands and searching for a new set (which is a crazy story in and of itself...). I was (or so I thought) totally in control of how my day would turn out. You silly-billy... haven't you read Proverbs 27:1?

While Auston was getting ready for work, I went into the kitchen and toasted him some cinnamon raisin bread that I had bought at our local farmer's market. I heard my husband's half-a-size-too-big boots coming towards me before I heard him ask, "Babe... Why does it smell so bad?"

Don't get me wrong, I had noticed the horrendous fish stench the moment I entered the kitchen... but I had better things to do with my day than worry about fish-smell. "Last night I threw away the bag of old Mahi that was in the fridge. I'm sure the trash just stinks. Can you take it out when you go, Auston?"

"Sure thing." He says. I spread homemade pear butter on my husband's toast and enjoyed the superficial yet fuzzy feeling of pretending to be a Pinterest wife. My nose wouldn't even register the fishy odor at that point. I had too many things to focus on to let a stinky trash bag steal any of my attention. Well, until Auston said, "It's leaking."

Nope. No, no it's not. It can't be leaking. Because if it's leaking then that means that it's





And it was all over my kitchen floor. A gallon of it, in fact. The Ziploc bag filled with 1 lb. of raw Mahi and cups of Mahi-goo had somehow managed to leak all over my tiled kitchen floor. It pooled into goopy puddles under the table and spread out like little rivers in the grout. I didn't know where to start. Seriously... how do you even begin to address goopy, halfway hardened fish goo covering your floor?

If you're Mary Duggins, you address it with an entire roll of paper towels. I must have looked crazy as I frantically sopped up as much of the mess as I could. I was like a fish goo ninja darting back and forth between the paper towels, the floor, and the trash can. I had a very limited stock of cleaning supplies, so the only thing I could think to do was dump half of a bottle of Windex onto the floor and let it sit while I ran to Walmart for candles, air freshener, baking soda, vinegar, and some stress snacks.

As I meandered through the empty aisles, I started mindlessly rattling off things that I was thankful for. "God, thank you for providing me with money to buy these cleaning supplies. Thank you for giving me an apartment with pretty tile instead of linoleum." I kept going, chanting my thanks like an incantation; hallucinating myself devouring a jar of cookie butter.

I made my purchases and drove home in silence, still angrily naming off the blessings that I wasn't at all grateful for at the moment. At home I lugged the plastic bags from my trunk and up the stairs to my apartment. Following the sucky pattern of my day, one of the bags ripped open and out dropped a candle that I had just bought. I picked up the glass shards and chunks of evergreen scented wax and started complaining about how the bagger should have double bagged it, how I should be at yoga, how my day should have been very different, how this was not what I deserved.

That's when God reminded me just how gracious He was being towards me. He gently reminded me that tomorrow I have to wake up at 5:30 and be out the door by 6. If this would have happened tomorrow instead of today, I would have had no time to clean this mess before work. How tomorrow the fire department is doing inspections in every apartment and if this would have happened tomorrow instead of today then they would have seen this mess and probably notified the apartment complex. How we could have incurred a fine for letting raw fish goo stink up the apartment if this had happened tomorrow instead of today. God's timing may not always appear best at first sight, but it always is.

There's nothing like a good slap on the wrist to make my stubborn tail cower between my legs. I usually have to learn (and re-learn) the hard way. This is just another example of how generous and gracious God is towards me even when I spend all morning doing nothing but complaining.

My mind automatically goes to Psalm 115:3 which says, "Our God is in the heavens; he does all that he pleases." and I'm so happy that it's true. It may sound funny, but God is good to me even when my apartment smells like rotting fish.