Sunday, February 24, 2019

Looking Upwards When Things Aren’t Looking Up

Ezra's long awaited pediatrician appointment has come and gone, but I'm not sure I’ve wrapped my head around it all yet. I wasn't surprised when the doctor agreed with our suspicion that Ezra might have autism, but I didn’t expect to hear that my son has macrocephaly, an eating disorder, and more than likely Obsessive Compulsive Disorder.

At the same time, I feel like I should have known these things all along because the signs were there.

In the past few months, my silly, sweet boy whom I could take anywhere has turned into a shell of himself. He used to be easygoing, he didn't fuss when we went shopping or ran errands, he had no behavioral issues. He was my comfortable daily companion. But symptoms of - what we suspect to be - autism and OCD have shown up and are unflinchingly standing their ground.

Lately, Ezra is all about routines. If he's at a playground, he follows a pattern for how and when and where he goes up and down on the equipment. If I back out of the driveway and turn to the left instead the right, he can’t help but scream and cry. With every intersection that he doesn't want me to drive through or turn at, his crying continues. If we enter our house through the front door instead of the garage door, he throws a fit. But it’s not a temper tantrum in the traditional sense, he’s just trying to let me know, “Mom, that’s not right. We need to go the other way.”. And if I realize that I forgot to grab something while grocery shopping and have to return to an aisle we've already been in, tears are guaranteed. Breaking from routine is just not something his structured brain is equipped for.

Though he's had food sensitivity since he began eating solids, his aversions are at a record high. The boy that used to eat eggs and sausage for breakfast every day, smoothies and unsweetened applesauce, bananas and chicken and pasta and every carb on earth is down to about 7 different foods that he deems "safe". And that's not 7 healthy foods plus junk food, that's 7 foods period. Just yesterday I spent a half an hour trying desperately and patiently to get him to eat his old favorite breakfast from Chick-fil-A but not a single bite made it into his mouth. And even when eating food that he likes, he has to pick crumbs off of his plate, his plate can't be turned or moved, and his cup has to stay in the same spot.

So I shouldn't have been surprised when his pediatrician referred him to a gastroenterologist, a neuropsychologist, a neurologist, and back to the therapies he was in before, but it's still a hard pill to swallow. The big upside is that once he gets his diagnosis, he’ll start to receive the proper care and intervention which I know will make a world of difference.”

Through this process, I’ve been told "You're so strong! I have no idea how you do it." more times than I have fingers to count. Sometimes I want to laugh because I know just how far from the truth their compliment is. I'm not strong in and of myself. I'm just getting by most of the time. I become weary when I think about it for too long, too. So I always answer with, "It's only by God's sustaining grace.". As a believer, I've known that to be true, but I've never experienced it in such a real way until becoming a mother. He truly does supply for every need we have and carries us through every obstacle we face.

What assurance it is to know that I don't have to worry about the future or carry the burden of Ezra's care all on my shoulders. Praise be to God for providing for all of my needs both when life feels like I'm swirling around a sharknado and when life is easy and I fail to remember that He provides the sunshine, too.

Monday, March 5, 2018

MRI Results

Last week, we took Ezra to get an MRI of his brain. He was such a trooper waking up before the sun, driving an hour to the hospital, and waiting while Auston and I filled out paperwork and answered questions.

He refused to let go of his fun, new "toy"... the hospital bracelet. Ha!

After rousing from the anesthesia, he was upset and dizzy. Fortunately, it didn't last long. Within 15 minutes he was back to his usual, happy self. He felt so good that he ate a big breakfast of Chick-fil-A chicken minis and hash browns!

Chick-fil-A makes everyone happy, right?

Maybe it was wishful thinking, but I was convinced that Ezra's MRI results would come back normal. I was more than a little surprised when our developmental pediatrician's first words were, "I got the MRI results... and they're unusual."

The MRI revealed that part of his brain - the myelin sheath - is smaller than it should be.

"What on earth is myelin?" was my first thought.

Myelin is the part of the brain that covers nerve endings and speeds up nervous impulses. Because Ezra's myelin is underdeveloped, the messages that his brain sends to his body and his body sends back to his brain are very slow or sometimes incomplete. This is the reason for his significant motor and speech delays.

I need to go down a bit of a rabbit trail for a moment, but I promise it loops back to the diagnosis.

3 weeks ago Ezra woke up in the middle of the night with a low-grade fever and was violently seizing. He seized for 5ish minutes and as soon as he stopped, we rushed him to the ER. The ER docs couldn't understand how a 102.2f fever could cause a febrile seizure (febrile seizures usually don't start until about 105f), but that was the only explanation they could come up with. They sent us home with some apple juice and amoxicillin and we took them at their word. Somehow, all of this made its way to our developmental pediatrician, because he brought it up on our phone call. He doesn't think a fever of 102.2f could cause a febrile seizure and he suspects that Ezra has an underlying seizure disorder. A low-grade fever isn't enough to trigger a febrile seizure, but it is enough to trigger a grand mal seizure in someone who is already prone to seizures.

So we're scheduling an EEG for Ezra and, depending on the results, meeting with a neurologist in the near future.

Now more than ever, our developmental pediatrician is convinced that Ezra has a genetic disorder. I guess I assumed since technology is so advanced that genetics would be, too, but apparently that field is still in its infancy. The developmental pediatrician warned us that we have a 50/50 chance of finding a diagnosis for Ezra. In his words, he knows that Ezra has a diagnosis... he just doesn't know that we'll ever find it.

Isn't that kind of like life, though? We don't have all of the answers, so we work off of what we know and we learn from our mistakes. Hopefully we'll find a diagnosis for sweet Ezra so we can correctly tailor his care, but even if we don't, God is sovereign over this situation. He designed Ezra. He loves Ezra. And He is glorified by this special little boy bearing His image.

Sunday, February 4, 2018

Searching for a Diagnosis

Yesterday I scheduled an appointment for an MRI of Ezra's brain... which isn't something I ever expected to do for my 15 month old. I also set up an appointment with a geneticist because Ezra might need a skin biopsy.

I hesitate to talk about his delays because there are much more important things about Ezra than when he'll learn to walk or if he can chew and swallow without gagging, but sometimes labels are helpful. But I realize I'm giving you the middle of the story without first giving you the beginning, so let me catch you up.

Before Ezra was even born, we had concerns about him. I had gestational hypertension and low fluid levels during my pregnancy so I was induced early. Not crazy early. He was 38 weeks. But, goodness, was he tiny. Ezra weighed only 5.10 pounds and he didn't gain much afterwards. I spent the first 2 months of his life doing little else besides nursing him. When he was 2 months old, we found out that he was in the negative 25th percentile. 25 percent below 0. He was immediately put on formula and chunked up quickly which was miraculous for my malnourished baby.

After that, it seems like we encountered a new quirk every month or so.

For starters, he has hyper-pigmentation all over his body. When I held him for the first time, I was so startled by the line running up his stomach that I thought the nurses had cut his belly. His little body is covered in tan whorls and stripes... we call them his "racing stripes".

He also has frontal bossing which just means that his skull is a bit misshapen and his forehead protrudes further than it should. Fortunately, Ezra's frontal bossing isn't very obvious. In this photo, you can kiiinda see how his forehead sticks out over his eyebrows.

Thirdly, He had low muscle tone until he was 7 months old. Physical therapy has been helping him greatly.

The fourth not-particularly-alarming-but-should-still-be-mentioned quirk is that he had extremely tight trunk and hip muscles as a newborn. His hips were so rigid and stiff that I couldn't put him into a baby carrier. His legs barely opened. I physically couldn't get his itty bitty, tight body into a baby carrier.

He has a Global Developmental Delay and Sensory Processing Disorder. The latter I didn't put much stock in until having a child with SPD. Let me tell you, when you have a child who would rather starve than let any "questionable" food go into their mouth, you realize that not all parents are crazy or looking for a cop-out for their picky kids.

And lastly, he was born with cupped fingernail and the cutest, most kissable overlapping toes.

So we knew about all of these little "quirks", but we didn't think much of them. Ezra was just... Ezra. He just happened to have hit the jackpot for random, nonthreatening medical conditions, right?

At Ezra's 12 month check up, his pediatrician caught me off guard when she said, "I don't think Ezra has just a developmental delay and sensory issues. I'm pretty sure there's something bigger going on that's causing his delays, his issues, his mild deformities. Ezra might have a genetic disorder. I'm not sure what disorder, but I think you need to meet with a specialist." Not what I was expecting to hear when I walked into the doctor's office that day.

We were sent to a developmental pediatrician and his opinion was the same as Ezra's pediatrician; he's pretty sure our son has a genetic disorder but he didn't know which one.

If I'm honest... I sometimes feel like this is all very unnecessary. Why put my son under anesthesia to get an MRI done? Why drive 4 hours away for a skin biopsy and more genetic testing? 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. I'm endeared to his individuality. He's one of a kind and I wouldn't have him any other way. But I want to give him 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.

But I'm tired of playing Dr. Google and self-diagnosing my son. So if we find out that he has a genetic disorder, then we'll tailor his care, therapies, expectations, and education towards that. And if we find out that he doesn't, then we'll continue working to get him caught up with his peers.

In the meantime, I'll be over here thanking God for giving me such a silly, snuggly, unique son and loving on him 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.