Praying for Felix Good

“I would have lost heart, unless I had believed That I would see the goodness of the Lord In the land of the living. Wait on the Lord; Be of good courage, And He shall strengthen your heart; Wait, I say, on the Lord!”
‭‭Psalms‬ ‭27‬:‭13-14‬ ‭NKJV‬‬

3 years ago today, we got “the call”. Even though we had been hoping and praying for that call, it was still a hard call to fully take in. We had been through months of the unknown, and now, a whole new chapter, was about to begin.
The surgery went great they told us.
But then his recovery seemed to drag on, and on.
During those months of waiting, these verses, and many others, were a real source of comfort to us.

Fast forward 3 years.
And Felix is doing great, with no scheduled Dr. visits for the rest of the year.
While it hasn’t always been easy, we wouldn’t trade any of it, for anything, And would do it all again without hesitation

“ Be still, and know that I am God; I will be exalted among the nations, I will be exalted in the earth! The Lord of hosts is with us; The God of Jacob is our refuge. Selah”
‭‭Psalms‬ ‭46‬:‭10‬-‭11‬ ‭NKJV‬‬

He wasted no time getting back to his beloved trains. 😂😍
He is definitely feeling better, before we went in, he was not even remotely interested.

And we’re outta here!!! Still has some recovery ahead, but he seems to be headed the right way.

We would rather be back, comfortably tucked into our beds, in our cozy little house. But, we are so thankful for all the amazing staff here at CHOA. As well as all of our amazing friends, and family, that pray for us and encourage us while we are here.
By way of update, they have ruled out chicken pox, and a form of herpes. Which pretty much brought them back, to a variation of hand, foot, and mouth disease… They think, that with his suppressed immune system, and the fact that he has eczema. The 2 combined, and caused a rash much worse than “normal”. And since it was so much worse then normal they had to eliminate a few of the others things first.
They are still waiting on lab results to verify this. But, they are confident enough, that they are talking about getting us out of here in the morning.

Keep us in your prayers, we think he got into poison ivy, the end of last week. But we can’t really be sure.
The pediatrician had prescribed an oral steroid and antibiotics. But it doesn’t seem to be helping, we reached out to transplant, and when they saw the pictures, they told us to bring him in. And plan to spend the night, while they figure it out.
So we are getting ready to head to Egleston’s ER. Pray with us that they can find this poor miserable boy some relief soon.

Sorry about the delay in posting his biopsy results, I was driving most of the day Wednesday when I heard them. And forgot to post when I got where I was going.
Praise the Lord, his results came back ZERO!! Due to to some new testing they take a little longer to come back then they used to.
In other good news, thanks to advances in medical technology, his next biopsy is potentially scheduled for fall of 2026. Unless something would happen to show up in the new blood work they will be doing.

It’s that time again. Biannual biopsy coming right up. One of the few tests in life that you are praying for a ZERO. 😊

And, Felix is officially a big brother!
Safe to say he’s currently very unsure of this status.

Rosanne Kate “Rosie Kate” officially joined the family at 3:06 this afternoon. She was 7lb. 11oz. and 20.25” long.

You could say we’re a fan of Dr. Shaw. 😊

Ever wonder what it’s like to be a heart surgeon? Follow along to see a day in the life of Dr. Shaw, a Congenital Cardiothoracic Surgeon in our Heart Center at Egleston. Over the past five years, Dr. Shaw has been dedicated to learning and becoming a better heart surgeon every day. He typically performs 150-200 surgeries per year ranging from ventricular septal defect repair, heart transplants and so much more.