Hi friends!
You heard us correctly - we are HOME! After weeks and weeks in the hospital in Houston, Cooper was released and we're back together in Louisiana again. It's been a long journey (and hence a long story!) but Logan and I wanted to give a quick update about what's been happening with Cooper since October and share where we're headed with his treatment from here on out.
When we were admitted to the hospital in October, the treatment team estimated that Cooper's length of stay would likely be between 3-6 months. The team of neurologists, psychiatrists, psychologists, and other medical specialists wanted to take a comprehensive look at his body and brain and figure out what may be causing some of the extreme behaviors he was exhibiting. While we were at the hospital, they observed Cooper in his daily occupational and physical therapies and in the child life playroom. Several tests were run and we made some pretty major changes to his medications. We had all hoped that he could stay at the hospital long enough for the doctors to be able to figure out what was going on! However, within the first few weeks of our stay, we found out that our insurance would not cover an extended inpatient stay. Insurance won't pay for us to stay in the hospital 24/7, but they will continue to cover all the tests, appointments, and treatments we need. We will just have to access them in a different way! Cooper and I will travel back and forth from Louisiana to Houston to see specialists throughout this spring. It's not an ideal situation, but then again, neither was 6 months in a hospital! As a result of this, Logan and I are choosing to homeschool Cooper for the remainder of the year (and maybe beyond!) We're excited about this season of togetherness and prayerful that I would be just the right teacher for my special student!
Though we headed home from the hospital sooner than we hoped, we trust that it is the Lord's best for our family. Looking back, we spent much of our time at HealthBridge feeling like we weren't making much progress. After just a few days, it was clear that there was no "magic pill" and no miracle treatment that would solve all of Cooper's problems. Sigh. I had kind of hoped that the scans and tests would show some glaring medical problem we'd overlooked and that we could all say, "AHA!" and fix it. Not so much.
What we have learned is that Cooper's Soto's Syndrome is a lot more comprehensive than Logan and I realized. The lead doctor on the team stated that he believed almost all of Cooper's cognitive, physical, and behavioral issues had roots in the genetic condition. It is much more significant than we ever realized. Soto's Syndrome is likely why he struggles with learning and reading in particular. It causes his low muscle tone which makes it hard for him to articulate some words, run long distances, write/draw, and even control his bladder at night. Soto's Syndrome can cause internal organs to work abnormally, creating problems in Cooper's liver, thyroid, and kidneys. Many children with Soto's Syndrome also display the characteristics of autism, oppositional defiant disorder, attention deficit disorder, and obsessive compulsive disorder. Many of his behaviors make more sense with this understanding! Sadly, Cooper's brain also experienced so much trauma as an infant (due to pre-adoptive abuse and neglect) that he has significant emotional struggles as well.
Now we know. And now we can continue to walk forward understanding a little more about what we're working with. And for that, we are so thankful.
We're thankful for you, too! Thank you for praying with us and encouraging us to persevere through this hard time. We feel so loved by you and are overwhelmed by your support. Please keep praying! Our journey continues at home and we would love for you to continue to be a part of what God's doing in our lives. Thank you for loving us so well!
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