Y’all!

You guys are AMAZING. The outpouring of love and support this week has been truly amazing. We are thrilled with the awareness being spread about our mighty Miller David and the Goliaths he is facing.

Before I go too far and forget (because I will), I want to answer a question I’ve gotten quite a bit:

Q: How do I follow your blog? How will I know when you write again?

A: If you’ll go to the bottom right of the Home page, you’ll see “Follow via email.” Type in your email, and you’ll get an alert when we’ve added more info!

Now for the good stuff: our results from Dallas. We went to Children’s Medical Center in Dallas last Wednesday (9/19) for a follow-up EEG and appointment with Mill’s neurologist.

A little backstory here is probably necessary: Miller was first admitted to Children’s on September 12, 2017, for infantile spasms (a type of seizure). We stayed that Tuesday through Friday and left with a 10-month old extremely tired of being poked and prodded, who had recently started steroids to alleviate said spasms. And steroids are the devil. So the whole idea of Children’s gives us a bit of the willies. We’ve been several times since last September, but this trip was different. Miller has been doing well. Like really well. When we met with the neurologist, Dr. Saima Kayani, after Miller’s diagnosis earlier this year, she told us she’d want us back every three months to monitor him. Let me just say that I gave a firm “no” to that suggestion, and we scheduled a follow-up six months later (i.e. September). You bet I’ll touch on that another time.

Thankfully, our brave boy fell asleep before the tech finished putting the leads on his head. We woke him up early Wednesday and kept him awake in the car so they’d get a read on both functions (sleep and awake).

So back to the good stuff: We had a short 40-minute EEG to get a gauge on any and all seizure activity since we’ve been weaning off one of the two seizure medications Miller is/was on called Sabril. (Side note: this medication costs our insurance $20,000 PER MONTH. Highway robbery!) We had the EEG at 10AM but it was more like 11, grabbed some lunch in the cafeteria (because when you try to fit all appointments in one day 2.5+ hours away from home, you don’t have time to run to Torchy’s for some delicious tacos – but I’m clearly over it), and our neuro appointment was scheduled for 1PM, but we finally saw her about 2:15. She came in, asked us for some updates on Miller’s development, checked him out, reviewed his growth chart, and told us the words we still can’t quite believe: HE’S DOING AMAZING.

I wanted to shout, “WE KNOW!” But I didn’t. I asked for specifics on what she thought was amazing and she told us:

• He is now in the 97th percentile for height and THE 50TH PERCENTILE FOR WEIGHT. This is huge. Boy was born six weeks early and wasn’t even on the charts! Fiftieth percentile means an average weight for a 22-month-old boy. Typical mito kids struggle to maintain a healthy weight, so this “50” really is a big deal.

• His gross motor skills and strength have significantly improved. Hypotonia (low muscle tone) is a byproduct of this disease. Miller has worked his whole life to support his own weight on the floor, sitting, standing, etc. It’s hard for him and we’re very proud of his progress.

• He’s very alert, tracks well, communicates, and is aware of his environment.

• But maybe the best part: WE GOT A NORMAL EEG. We’ve never gotten a normal EEG! He’s had probably… 8? 10? I’ve lost count. But both in sleep and while awake, his little brain waves are NORMAL.

Now I don’t think it is coincidence that the first blog post went live Wednesday on our way to Dallas and the doctor gave him rave reviews just six hours later. I thank you guys and the good Lord above. AMAZING. We are still shocked! And grateful! Thank you, thank you, thank you!

Before I sign off, it would be remiss if I failed to mention last week was Global Mitochondrial Awareness Week. Every year during the third week of September, the United Mitochondrial Disease Foundation launches a week-long campaign to bring awareness to this rare disease. Mitochondrial Disease (MD) affects 1 in 4,000. Every 30 minutes, a child is born with mitochondrial disease in the world and 50% of them won’t live to see their teens.

Miller suffers from an even more rare type of Mitochondrial Disease called Leigh Syndrome, or Leigh’s Disease. Leighs is believed to affect 1 in 77,000. There is no cure, no known treatment, and the outlook is bleak. We are like hundreds of other parents hoping, praying, and searching for the right doctors that will find a cure for our little boy.

Again, we thank you for your love and support. We ask that you continue to pray for Miller Man and that he gets healthier, stronger, and smarter every day, and that we are doing the right things to help those things happen. This video is from a weekend with family at the lake recently of one happy boy! Unrelated to this blog post, but it makes us smile and we hope it does the same for you. Hope you guys have a great week!

Love,

Jac