And the realities…….
So, the real world part of my non blogging….
It has been a crazy few months. I wrote about Kailey’s hospital stint with the full bladder and the seizures. The follow up with the urologist went down with a urodynamics test that showed that her bladder really isn’t holding what it should be, and the pressure in there is high. Which means that as soon as she fills up just a little bit, she hurts. Right now we are hoping to get through the rest of the school year before we do surgery. The reality is that if she has another episode where her bladder gets too full and she is unable to be catheterized, she will HAVE to have surgery right away, rather than putting it off. BUT… for right now, she is doing really well. She follows a strict schedule and so far so good! Keep those fingers crossed!
TJ has been diagnosed with Juvenile Arthritis. We are waiting for some labs to come back. What we do know about Juvenile Arthritis is that nobody knows why it happens. There are blanket terms like Juvenile Idiopathic Arthritis as well as Juvenile Rheumatoid Arthritis. These are one in the same. While they are blanket terms, there are different sub categories that fall under those blanket terms. Girls are more likely affected than boys, except with Enthesitis-related Arthritis, which commonly affects boys and not girls. This type of arthritis also affects the eyes. It shows up in labs, and we are waiting for the results of those labs, but we still need to have TJ’s eyes checked out, just in case.
The first 6 months of JA are crucial for the diagnosis of whats to come. With in the first six months, they can usually tell what joints will be involved. So far, we have seen TJ go from one knee to two. Last appointment he had two knees and a toe. This morning he had his ankle swollen and painful and an elbow sore and slightly swollen as well.
So, we know that this Juvenile Arthritis is an Auto Immune issue. His white blood cells can’t tell the difference between bacteria or viruses and the healthy cells in his joints. The white cells are attacking his joints as if they are fighting off an infection, therefore causing damage.
So, that’s the reality of life around here, and while it is a lot to take in… for ME and for my husband… and for the ADULTS, the kids just swing with it. It is nothing short of amazing at how resilient kids are. I can’t say it enough, I have HAPPY children. I say this with my heart filled with pride. I am boasting, really. These kids, are AMAZING. While all of this is going on, it doesn’t get them down!
I should tell you also that while we are at these appointments Alison, who is 4, is usually in tow. And she sings and colors and plays. Being stuck at an appointment for her siblings for hours and hours is second nature to her and she is wonderful about being there. Her only demand is that she get a sticker too.
And Kevin Jr, he is just a caring loving soul. The majority of these appointments are made in the mornings, while he is in school. But he is well aware that they are happening. The first thing he wants to know when he gets in the door is how did it go. What happened? What can he do to make things easier for his sibling? Then of course, he argues with them like usual… because life goes on AS USUAL.
Really, that is the way it is supposed to be, isn’t it? The weight of the world, the worries and the fears should be for the adults to carry. A child should never have to know as much as these kids know. The fact that my kids can toss their concerns into the corner of their mind and play like kids play, beings light to my life. While my heart aches that their bodies hurt, my soul glows because they are so incredibly strong and funny and brilliant. I’m a proud momma. What can I say? I love my babies.