I think switching from posting every two weeks to monthly was a good decision…for the most part. It does give me a longer break in between posts to do yardwork on the weekends, or just relax with the family. The one drawback, though, is that I sometimes forget what happened a month ago or three weeks ago. Between Stacy’s notes in James’ medical binder, and Facebook posts, I think I can piece everything together; most of the important things anyway. I just hope I don’t miss anything.
Spinal Surgery
Let’s start with what is probably the biggest thing from this past month. As you may know, one of James’ many issues is scoliosis. Compared to some of the other issues he has, this was lower on our things to be concerned about list. As he’s gotten older and bigger, there has been growing concern that the curvature of his spine could start to affect his lungs.
We have been discussing options with the orthopedist over the past year. One of those options was spinal surgery, but the curvature of his spine wasn’t at the point of surgery yet, and he wanted us to try a TLSO (thoracic lumbar sacral orthosis) first to see if that would help straighten the spine. If you don’t know what a TLSO is, it’s a brace that goes around the torso. Stacy refers to it as a turtle shell, which is a pretty good analogy. It’s two pieces (front and back) and held together using Velcro straps.
When we originally started discussing the option of surgery, the orthopedist was thinking about using growth rods. These rods are attached to the spine above and below the curve. Every few months James would have to go in to have the rods lengthened to account for his growth. Whenever James is finished growing, the rods will be removed, and a spinal fusion would be done.
We met with the doctor in mid-June, and he is leaning towards scrapping the growth rod idea and going straight to the spinal fusion. He thought the spinal structure looked good and solid and that it just might be the smarter choice. He wanted to do a little more research and talk with some other doctors before making his final decision though.
We met with the doc again yesterday and we are a go for a full spinal fusion on July 25th. Please start saying some prayers. James has had many surgeries in his short life—and has rocked them all—but this one will be the longest by far. The doc is estimating six to eight hours!
Holey Gum
Something else to add to James’ quirks. A couple of weeks ago Stacy was brushing and cleaning his teeth and notice a little bit of “gunk” coming out his gums. She used a long, pointy-tip syringe to try to flush out the gunk and see where it was coming from. She was able to put the tip of they syringe into this hole in his gum (where the gunk was coming from) and hit was she thought was a tooth under the gum.
She was able to get him into the dentist a couple of days later to get checked out, and the dentist said that there was a little cyst that is holding fluid. There are two baby teeth above the hole, but there is no infection which is good. It’s the pressure of the baby teeth that is causing this hole in the gum.
We have been discussing having oral surgery to remove all of his baby teeth. He doesn’t eat by mouth so he’s not using them anyway. It would also alleviate the potential of one of his baby teeth falling out and getting lodged in his throat. He will be getting grownup teeth eventually. We’re not sure when the oral surgery will happen yet, but I’ll keep you posted when we know.
Father’s Day
I do this often, but I think I really question it on Father’s Day. I wonder if I am being a good father to James. Sure, I try to do everything I can for him, but I often wonder if it’s enough. Is there more that I can or should be doing? I can’t teach him how to play baseball, or basketball, or golf. I can’t take him out fishing. What are some other things that I can teach him or do with him with his limited abilities?
I think what makes it hard is spending Father’s Day with Stacy’s family and watching our nephews throw the ball around in the yard and knowing that James can’t join them. I wonder if James ever feels left out or wishes that he was able to join his cousins in a game of football. Part of me hopes that he doesn’t mentally comprehend his shortcomings. I don’t want him to be sad or depressed because of the things that he can’t do.
Other than my thoughts above, Father’s Day was good. Good food, good people, and good weather.
A local frozen yogurt shop was giving away a cake for Father’s Day. Whoever gets the most votes wins. Stacy entered me, and I actually won! I couldn’t bring myself to cut it because it would be like I was cutting myself or James. Stacy had no problem cutting it, though. Should I be worried?
Other Stuff
Stacy bought James a new shirt that says “I can eat while I sleep. What’s your Superpower?” This is one of the many simple and fun special needs shirts we’ve seen over the years. It has me wondering if this is something we could do to bring in a little extra money. I’ll have to do some research to see what it would take to design and sell shirts like this; and what the profit margins would be. Maybe some day we’ll open up our own little t-shirt store.
If you don’t understand the shirt, James is tube fed. He doesn’t need to be awake in order to eat. Thankfully we don’t have to do this anymore, but when he was little, he would get a feed in the middle of the night while he was sleeping.
Stacy took a video of me annoying James the other day. I don’t know if it tickles, or just feels funky, but if I softly run my fingers on his palm, he’ll pull his hand away.
This is what happens when Stacy is bored and finds a new app for her phone: