I have to admit that the spinal fusion post took a lot out of me. It was a lot of work to go through all of our notes and pictures to put it together, and it turned out to easily be one of the longest posts that I have ever written. Yeah, I probably could have shortened it and left out some of the details that probably weren’t that important to whoever reads it, but that would have taken me even longer. It’s done. It’s posted. If you actually sat there and read the whole thing, thank you. The time it took to write it wasn’t totally wasted. And for those of you that didn’t read it word for word, I don’t blame you.

Now I need to try to get back into the habit of writing monthly posts. It’s been about two months since I’ve written one of the regular posts and I feel so out of practice. I’ll apologize in advance if this turns out a bit sloppy.

Before I get started with our lives since James’s surgery (and extended hospital stay), there is one thing that happened a couple of days before the surgery that I didn’t share with you. James finished the 4th grade…a little bit early. After a small bout of pneumonia in mid-April, and a struggle to bounce back from it, we made the decision to pull him out of school for the remainder of the school year. We had been waiting almost two years for him to get a spinal fusion, and we needed him to be healthy.

Dealing with James’ “New Spine”

These past six weeks or so since James has been home after the spinal fusion has been a bit of an adjustment. Pun intended. Seriously, though, it’s like he had a growth spurt. Now that his back is straighter, he is a bit taller. We had to make a few adjustments to the headrest on his wheelchair because he is sitting up taller.

A few years ago, Stacy’s dad found a board and covered it with carpet for James’ to use for his percussion vest. Now that James is a bit longer because of his straighter back, his feet were hanging off the edge, so her dad brought over a longer board. You can’t tell in the picture, but we put a piece of wood under the board where his feet are so that the board is on a decline where his head is. When the percussion vest breaks up gunk, gravity helps it flow out of his mouth, as well as his secretions.

Speaking of boards, Stacy and I are still not used to the fact that James’ back is now as stiff as a board. I’m sure we’ll get used to it eventually, but we still pick him up expecting his back to bend a little bit, but it doesn’t. It just feels very awkward.

Turning 10 Soon

I think I say this every year, but I can’t believe James is going to be 10 years old at the end of the month. That’s a decade! Ten years ago, Stacy and I were mentally preparing to be parents. Little did we know then that there was no amount of mental preparation that could have prepared us for James. Our lives were forever changed when James was born. I’ve heard several stories of couples that split up or got divorced after the birth of a special needs child because one of them just couldn’t deal with it. I get it. It’s hard. It’s not the life you envisioned. It’s a lot of work. It’s a lot of stress. Maybe Stacy and I are different in the fact that it’s made us stronger. James is not the perfect son that I imagined. I won’t get to teach him how to play baseball or golf, or how to ride a bike. We won’t work on cars as he gets older. I have grown to accept that. And that’s okay. He’s still my son, and I love him no matter what.

Those of you who have been following James for a while know that we do a theme for his birthdays. This year is no different. Sorry, but I won’t be sharing the theme just yet. You’ll have to wait until his birthday party post. The party is on Sunday the 25th so I’ll try to post something on Monday the 26th or Tuesday the 27th.

Playdates

James, Stacy, and I all had playdates over the past month. Stacy and I went out for Mexican and ice cream on June 29th. On July 31st James had a playdate with one of his “girlfriends”. It was actually more of a nap date.

Yesterday Stacy and I went out with James’ one-on-one school nurse and her husband for a round of minigolf.

More Digestion Issues

James’ digestive system decided to go on hiatus again last week. He had been doing fine with feedings after he got home from the hospital following his spinal fusion surgery, but for some reason he just stopped digesting his formula. No idea why. Stacy stopped the regular feedings and switched over to Pedialyte to make sure he stayed hydrated. After a couple of days of just Pedialyte, she slowly started adding formula back in. He’s not quite back at full feeds but getting closer day by day.