I've also realized that, while a lot has changed for Judah over the years, there are still some things that haven't. And I haven't been good at keeping track of those things here. It's been so long since I wrote a simple H&W update, just so people know where he's at physically and developmentally. And if there's nobody left out there, that's just fine. I'll have this here for me to compare with and remember later.
Judah's vision and eye muscles/scar tissue/development issues continue to be a challenge. We roll with the changes that need to be made as he grows, trust Dr. Legge's (ridiculously thankful for and LOVE this dr. so much to this day!!!) judgment, and "wait and see" on how his muscles and vision will do as he gets older. We have a consult with a new eye surgeon this month to talk about the possible need for a lid revision. Over the last year - more so in the last 6 months - I've noticed that Judah's lids seem to be getting droopier again. At our 6 mo. check in January Dr. L. agreed. He seems to be having to work harder to keep those lids up and they seem to droop farther down than they used to when he's relaxed. The right side is definitely worse. We'll see what the surgeon says. If there's an alternative to surgery, I'll take it!
Judah's kidney disease is managed well, and his kidneys continue to be as healthy as they can be! I've been reading from 2010, when Judah got the G-button, and my feeding goal for him. One of which was to get him on a complete oral diet and get rid of the button! Well, here we are 9 1/2 years later, and we still have that stinkin' button. Judah eats well, but can't drink the necessary 60+ fluid oz. he needs a day to keep his kidneys hydrated. I've stopped even thinking of a goal for an exit strategy for the button. Especially since May, when another Diglutition study showed that Judah was silently aspirating again. Who knows for how long. He can't eat or drink anything less than a honey-thickness. Not sure what the timetable for this is. But that has directly impacted the amount of fluids he takes in independently. AND he will only drink light blue Gatorade. That is all. We're meeting with a specialist in this field in a couple of weeks so we can learn some exercises and strategies to help strengthen that part of his anatomy, and hopefully move to a nectar-thickness or less...please, Jesus. I would love to think that he'll grow out of this, and be stronger later. But I just don't know that that's part of God's plan for him.
Related to the kidneys, he had an EKG last week. Let me back up a minute. Judah has high blood pressure, because of the kidney disease. The medication works, his school nurse checks his BP once a week, and he's stable. BUT high BP can cause a thickening of the muscle around your heart, because your heart is working harder because of the increased blood pressure. So, his Nephrologist said it was time for the EKG to make sure his heart is in good health. Haven't heard back yet. That was just Friday. But, in this world, no news or slow news is usually good news.
Judah's urology health has basically plateaued, and he's in a good spot. We do still have one major challenge in this area. For the sake of his privacy and dignity, that's all I'll say.
This little stinker is growing like crazy! He's caught up to his peers in size, and he eats all the time! He loves to snack on bread, cheese, yogurt, and peanut butter. He is a Stewart after all.
Developmentally...in some ways, he's a typical 10 year old. He loves to be with his friends and family, he loves school and video games, and he doesn't like showering or going to bed. Usually. But, as Judah gets older, the gap between his emotional and social development and his peers' widens. And as school gets tougher, he continues to struggle. He's on grade level, and he works HARD! And his sped teachers work HARD! Buuut...he's really just not your average kiddo. Some of the most unique things about him are things I love the most; but they're also things that can be conspicuous and make him vulnerable. I am beyond thankful for the community God has surrounded Judah with! He is loved and accepted and wanted! And, for the most part, the kids around him are kind and patient.
We're moving forward with orthodontics. I've been content to put this off as long as possible...and even push past that...but they tell me it's time now. Judah will have several teeth removed before having the 1st of 2 appliances put in his mouth to begin widening the roof of his mouth. This is an area that I have to constantly remind myself to trust the Lord with. I don't have grace for these appointments yet, but I will on those days. And so will Judah. I have a lot of anxiety about how Judah will handle all of this. And I don't know how to help him right now. Besides watching other kids go through the same things on YouTube so he can see what's going to be happening. This will be a looooong road for him, with lots of different procedures and appointments and "new". So, Jesus, take the wheel.
I think that's all for now. Except for this:
These appts. with Dr. L. can be super long. But Judah is the best sport there is. So patient and chill and happy to be on my lap, or reading a book or mag., or watching PBS on the T.V. Love this silly kid.
