The JC method

It’s hard to believe the last blog was back around Easter. Living in the moment this summer hasn’t left much time for updates, and boy did we! We’ve had a happy, healthy boy with which we’ve done our best to make memories.

If you missed the last post, you can read it here. For some reason, email notifications didn’t go out when I posted last time.

We learned in April how quickly life can change when we lost several precious babies to Leigh’s. Our hearts took quite a hit knowing the parents aren’t able to rock their baby to sleep or cuddle them on a lazy Saturday or see their beautiful smiles. So needless to say, we were pretty anxious about Miller’s check-ups in Dallas in June.

So each year, it is recommended Leigh’s patients see a cardiologist and ophthalmologist in addition to their neurologist check-ups. I may or may not have included the interaction with his neuro in regards to frequency of check-ups, so let me do that reeaaaalll quick:

Back in March 2018 at our first appointment post-diagnosis, the doctor told us she wanted to see him every three months to “keep him top of mind.” We are committed to giving Miller as normal a life as possible and agreed on every six months instead. When we went back in September 2018, SHE ASKED US, “So when do y’all want to come back? He’s doing so well, I’m thinking nine to 12 months?” YUP. So we settled for June, and this time, she told us to schedule when the other practitioners wanted to see him because he’s doing so well she’s not worried about a set schedule anymore. BOOM. Mic drop. Miller is awesome. God is awesome.

VIDEO: Miller takes on Children’s

So in June, his ophthalmologist told us he didn’t need to see him until until he was four (that’ll most likely be 2021) and the cardiologist said if it wasn’t recommended, he wouldn’t feel the need to see him annually, but to be safe, we’ll keep it as it is. WHAT AN ANSWERED PRAYER, RIGHT!? All the praise hands.

With such glowing reports, we felt pretty confident in doing all the things this summer we wanted to do.

SUMMER TRAVELS

We are big fans of the lakehouse my parents have on Inks Lake and we do our darnedest to spend as much time as we can there. We have been able to go three times with our friends and family. We had the pleasure of the newest little tribe member join us AND learn of another one to come this winter! Praise hands for all the babies!!!

All in one weekend we had an adoption party, a joint birthday party, a wedding, a sleepover, and kicked off an annual convention for work – how’s that for L-I-V-I-N? The adoption party was with some beautiful friends that entered the foster care world a while ago. They were able to adopt their second son this summer, and we got to help celebrate! Isn’t that just the best? Then we ventured south to celebrate two cousins’ birthdays in one afternoon on our way to Fredericksburg for a college roomie’s wedding. The next day, we took off for Round Top to see our friends Katie and Tyler (Beckett’s parents) on Fay Ranch. It was a wonderful 24 hours with them, but not long enough!

In Houston, we were part of the TWQA, Texas Water Quality Association, annual convention, complete with a golf tournament in which Dad and Josh came out on top, an awards banquet, and a dance hall. Miller made his presence known by showing off his new wheels all over the hotel and dance floor. He added a few members to his fan club and had a blast.

The following weekend we partied with kin at the Haby-Zuberbueler Reunion in Utopia followed by another weekend at Inks Lake with our family and friends. And the very next weekend, we traveled back to Fredericksburg to celebrate one of our favorite friend’s 5th birthday complete with a pool party and trip to The Exotic Resort Zoo in Johnson City.

Miller with one of his favorite cousins, Jillian, at Reunion.

Miller Man has seen and done quite a few fun things this summer to say the least, and we like to believe these are due in large part to what a dear friend dubbed “the JC method.”

THE JC METHOD

A fellow Leigh’s momma, Jody Connor, posted in the Leigh’s Syndrome Facebook group of her son’s miraculous healing – from hospice to healthy. Like attending school without an individual education plan (IEP) type of healthy. I mean, come on!!! I had to talk to her. After a couple months of email and phone tag, we connected and the timing couldn’t have been more divine. She helped us implement a series of changes to help Miller be his very best self. And it’s working! We’ve seen skills return we thought were lost forever.

VIDEO: Popcorn phene

Miller eats popcorn like it’s going out of style. He decided to break his self-feeding hiatus for popcorn and then he took on just about everything else!

We’ve heard him laugh more in the last month than possibly ever. His strength and awareness have increased. He’s been doing so well, amazing us every day, and we are so thankful. There’s nothing better than seeing your child achieve things for which they have worked tirelessly. She’s given us hope and relief and hasn’t taken a dime of our money. She told me she feels strongly this is her ministry. Thank you, Lord, for Jody!

Notice the damage to our walls? That’s because our boy is RUNNING through our house and thinks crashing is fun. We would love to fix them, but we also love the fact that he CAN damage our walls with his strength and mobility. They’re our daily reminders of prayers God has answered.

You may see an empty plate, but we see a “happy plate” from which our boy fed himself an entire meal. He is amazing us daily and we’ll gladly take the messy hands (and tray and face and floor) any day. We don’t take a single milestone for granted.

We hope you all have a great start to your fall that is full of health, happiness, and that you will join us in joyful praise for our boy and all he has ahead. We ask for prayers that our boy stays healthy and benefits from these new exciting changes.

Love,

Josh, Jac, and Mill