Some Test Results

*Sssiiiggghhh* Sometimes I just don't know where to start. My beautiful boy's life has just started out so complicated. He's definitely doing better; his lungs are healing well - slowly - but well. He'll be off the vent soon. He's off all of his BP meds and coming down well on the Hydro Cortisone. His cord tube is finally out...which meant that he needed to have an arterial line put in his heel so they could still draw blood gases...but he's up on feedings. 20cc starting tomorrow:) Now that we've had time to process his urology issues, we realize that those are the most fixable and temporary health concerns that Judah has. We'll get past those. One day at a time. Funny Story. Judah even had his first poop today! The beauty of it was that Daddy got to change it...a whole little diaper FULL of maconium that had been backed up in his system for a week! Wish I had gotten that on video:) So, as we go one day at a time, sometimes one hour or one moment at a time, we're able to process what's happened and rejoice over how far our Champ has come. But there's still so much more to come for him. Which brings me to the latest test results we got. The EEG (testing for seizures) showed normal activity for Judah's age. He still has the "jitters", but that could be a result of coming off some of his drugs, too. He seems to have improved somewhat in that area, too, so yay! The MRI results were good, but not really complete. They didn't see Aqueductal Stenosis, which was his presumed diagnosis before birth. That's good. His ventricles may just have developed larger than normal, and that's why he has more fluid. Not totally clear on that yet. The biggest thing that came from the MRI was confirmation that his pituitary gland is indeed under-developed. Hormones. That's what this "Master Gland" is all about. Judah's hormone levels have been coming back low - cortisol, thyroid, growth, testosterone (still suspected, but not definite). He's on Hydro Cortisone to replace the cortisol and a thyroid med. to replace that. The growth hormone affects blood sugars, etc., and isn't something we're concerned about yet. The testosterone is still yet to be determined. These hormone deficiencies will most likely be treated with drugs for the rest of Judah's life. But at least they're treatable. He'll be having another MRI to focus almost solely on the pituitary gland probably later this week...and then we'll know more. Of course with what they call "mid line" anomalies in the brain like Judah has, he's at a greater risk for developmental delays and possibly even vision problems. But ya know what? Right now I just feel like telling everyone, SO WHAT?! This is just my baby, my boy. Fine, I get that he has health problems, and he'll have special needs for the rest of his life. And yes, he's extra special to me. He is so precious in his vulnerability and helplessness. But he's still also just my son. Judah. Just Judah. And I don't know if anyone else will ever be able to see him that way. God didn't create a special needs kid. He created - He personally knit together - a beautiful little boy that He knows intimately and loves passionately. Ok, so God sees him as Judah. God knows all the details of every health problem, but He also knows just Judah. I can't think of a better way to close this post than with that truth.