Philly Philly

Hey friends!

It’s been a good while since I’ve updated y’all on Miller. When I started this blog, I envisioned posting a couple times per month, but I also wanted it to be all about Miller – not me – and a blessing to our family, not a burden. So here we are! Nearly four months since my last blog because the topics didn’t come to me, the timing wasn’t right, but most importantly, when Mill wasn’t 100%, my focus wasn’t on sharing. It was on being there for my boy and doing everything I can to get him back to his norm. I’m happy to report our boy is back!

“Life isn’t easy, but it is always beautiful.” A friend shared that with me in 2016 when I was laid up in a hospital bed waiting for Miller to make his arrival. If this boy has taught us anything in his two years on earth, it is to take life one day at a time, find the joy in each day, and love those around you with all ya got.

A lot has happened since I’ve written about our boy last, so let’s “taco” ‘bout it all!

Taco Bout 2

Miller turned two! He had the BEST birthday party on his birthday, November 3. Some very generous friends, Kelly Jay and family, allowed us to borrow their beautiful space, the Backyard at TMI, so that our closest friends and family could celebrate another year of our boy. And we did! He helped bust a piñata, smothered himself in cake, and got to play with all the kiddos.

Straight from heaven: Miller’s birthday laughs

Above: Cousins Elyn, Parker, Mason and Crew.

Our dear friend and Miller’s Godmother just happens to be photographer Kaitlyn Bullard with The Big & Bright.

Even months after, I find myself tearing up. As a mom, I want my baby to be loved, to love others, and to be happy. And on that day, he sure as heck was/did. And he took a serious nap after he came down from the sugar! Win-win!

CHOP

I’m slowly realizing God plants seeds in our life that develop over time. I’ll try to lay this out as briefly as I can, but bear with me: Last February, Miller was officially diagnosed with Leigh’s Syndrome and we were lost. How in the world is a parent supposed to cope with a terminal diagnosis of their child? So I searched for information, doctors, fellow parents, anything to help us cope with our new life trajectory. In that search, I found a Facebook group of Leigh’s parents.

Seed.

Praise God for community, amiright? The admin of this page shared information on a doctor, Marni Falk, MD, attending physician and Executive Director of the Mitochondrial Medicine Frontier Program at Children’s Hospital of Philadelphia (CHOP), speaking in Florida in April.

Seed.

Long story short, we were in Florida for a Culligan convention at the same time Dr. Falk was speaking on the only night we didn’t have an event the week we were there.

Seed.

So we went to hear her speak and were in awe of her knowledge, demeanor, and desire to research the disease to find a cure. We spoke with her afterward and learned one of her team members specialized in the exact mutation Miller and I share.

Seed.

There are over 300 types of Leigh Syndrome which is a subcategory of mitochondrial disease which is already very rare. See what I mean?

But wait — there’s more! Shortly after we got home from Florida, I started the process of getting an appointment for Miller Man at CHOP. They sent me an email listing all the requirements necessary to book an appointment with this team… it seemed endless. So I slowly started chipping away but didn’t have much motivation due to the daunting list. But God helped us once again. I requested a copy of the medical records from Children’s Medical Center in Dallas be snail-mailed to CHOP and before I had the rest of the list squared away, CHOP called me. They’d received them and wanted to see Miller. So we booked appointments for November (the week after his birthday) and I finally got all the required info to CHOP within the week of scheduling.

Seed.

So, thankful to my parents’ airline miles and The Ray E. Martin Memorial Fund, we went to Philadelphia, Pennsylvania! We saw Dr. Rebecca Ganetzky, an expert in biochemical genetics and specializes in mine and Miller’s genetic mutation; Dr. Amy Goldstein, specializing in mitochondrial disease and clinical child neurology; a nutritionist; and a physical therapist; and had several blood draws. We gained valuable information, but better yet – we gained knowledgable contacts that specialize in what our boy is dealing with and that is the biggest victory.

Smiles

This is where those seeds sprout. Shortly after we returned, Miller started acting like he wasn’t feeling so hot. We battled allergies, but nothing else seemed to be wrong. Slowly, our boy’s personality started slipping away. He quit smiling, laughing, his sleep suffered, he didn’t want to drink much, but he was eating and seemed to be tolerating therapies fine. We reached out to CHOP and were recommended a couple changes: 1) add sodium bicarbonate (pretty much baking soda) multiple times per day and 2) change the time of day at which we gave him certain supplements to help his sleep. And it worked! Not overnight, but it did! How our happy, smiling, smarty pants is back! God is good.

Thanks for following along with our journey! If you want to be notified the next time a post is up, go HERE and enter your email address in the bottom right-hand corner. And who knows, maybe it’ll be sooner rather than later!

Love,

Jac, Josh & Mill