Are we in December? The calendar says that we are, but it hasn’t felt much like it around here. It almost seems that we’re stuck in fall. We had a bit of snow in the morning of the 5th, but the weather warmed up enough that it melted by noon. December 8th and 9th the temps were in the 50s during the day, which is not normal for this time of year. This past Tuesday we dipped into the teens, but for the most part the temperatures seem to have been warmer than normal. I’m not complaining because I hate the cold. I just hope that we’re not in for some rude awakening later this month or in January.
Medical News
This may or may not be medical news depending on how you look at it, but James made it onto Peptamen’s Instagram page:
Peptamen is a formula made by Nestle Health Science. Since James is unable to eat by mouth, this formula provides him with all the nutrition he needs. As Stacy puts it, “it’s his lifeline.” Yes, there are other formulas out there, but we haven’t found one as complete as this. He’s been using Peptamen for years and we have no complaints and have no reason to switch to something else.
In other medical news, it looks like we are moving forward with oral surgery to make space in James’ mouth for his tongue to lay flat in the bottom of his mouth. If you haven’t seen this picture before, see how his tongue sits in his mouth at an angle?
The two doctors that will be doing the surgery had some ideas of what needed to be done when we first met them a couple of months ago. They wanted us to come back down and have some more detailed scans done of his mouth so they can see if they can get a better picture of what is going on underneath the gums.
My geeky side came out a little bit while they were doing the scans. I wish we had taken more pictures. The technology is really cool. The first machine they used was a bit awkward. It required James to sit in a chair while Stacy held him upright because he is unable to sit up on his own. Stacy had to crouch down low while holding him up so that she wouldn’t be struck by the top part of the machine that rotated around James’ head to take a full 3D image of his skull. I didn’t think to take a picture, but the machine looked like this:
It took us longer to get him situated in the machine than it took for the machine to do the scan. We ended up having to do it twice. Once the first scan was completed, Stacy put him back in his wheelchair while the tech reviewed the image produced by the scan. She wasn’t completely happy with it and wanted to take another scan which meant getting James back into the machine. Fortunately, the second scan turned out good.
That is just a still image of the scan. On the computer, they are able to rotate it so they can get a better view from different angles.
After the tech was happy with the scan the second time around, she walked us down to another room that was more like a dentist’s office. Here another tech used this special “wand” to get a 3D image of Jame’s teeth and jaw. It was really cool to watch it on the screen. I didn’t think to take video of it, but I did snap a few pictures.
It was a good appointment, and the docs think they have all they need to plan how they’re going to approach the surgery and to create whatever mold they may need. Unless something changes, or insurance declines the surgery, it looks like it will be happening sometime in February. They say it should be an outpatient procedure, but knowing James, we’re expecting at least one night in the hospital. Hopefully it won’t be a prolonged hospital stay because I will be driving back and forth every day and I hate driving in and out of the city. This was traffic on the highway coming out of the city at 3:00 in the afternoon after the appointment:
School
In another week, James will be done with his first semester of high school. We’ve been very pleased thus far. We know he’s not going to excel academically, go onto college and become a contributing member of society. We came to terms with that a long time ago. For James, school is more than academics. It’s being around other kids with mental and physical handicaps so that he doesn’t feel like he’s alone with his struggles. It’s getting the therapies he needs to be the best version of himself that he can be. And I hope that by being around “normal” kids that those kids learn at a young age to be respectful and compassionate towards others with disabilities. I also hope that they learn not to take things for granted.
James won’t be able to do a lot of things without the help of others, but that doesn’t mean he should sit on the sidelines as life passes him by, does it? We want him to have as many experiences as he can. When Stacy told me about a month ago that James was going to go swimming at school, I was a little apprehensive. It’s been a long time since James had been in a pool, and that was when he was a lot smaller, lighter, easier to handle, and he was in Stacy’s care. He’s grown a lot since then, is not as easy to handle (especially since the spinal fusion doesn’t allow his spine to flex), and he was going to be with someone relatively new to him.
He’s gone swimming a couple of times now and I’ll probably always be worried about it, but I need to trust that they wouldn’t attempt to get him in the water if they didn’t feel comfortable with it. One of my big fears was that they were going to drop him while trying to get him into the pool. In the past when we’ve taken James swimming, we had to carry him into the pool. I was relieved to find out that the school has a chair lift to get him into the pool. Here’s a video of them using the lift:
That video was taken the second time they went swimming when they put a floatation device around his neck. Here are some pictures of the first time he went swimming at school when they didn’t use that floatation device:
It may be a little bit hard to notice, but he has a bag around his left foot. He uses a pulse ox to monitor his heart rate and the oxygen saturation levels in his blood and the probe for the pulse ox is wrapped around one of his toes. Because it is electrical, the probe can’t get wet, so they put a bag around his foot to keep it dry.
Here are a couple of pics from the second time he went swimming. Notice that he doesn’t have a bag around this foot. They decided to take the pulse ox probe off for swimming and put it back on when he was done.
A couple of weeks ago they went on another one of their field trips to a local store. This time they went to Cabela’s and Bass Pro Shop. When Stacy told me that James went there for a fieldtrip, I jokingly asked if he bought me a boat for Christmas. I don’t even know why I asked that. I don’t fish, and I don’t ever see us going boating as a family. It’s just the first thing that I think of when I hear Bass Pro Shop: the boats. The answer to my question was obviously no, James did not buy daddy a boat for Christmas.
Thanksgiving
Thanksgiving was uneventful. We spent it with Stacy’s side of the family like we normally do. I tried to be good this year and not go overboard with food, but I just couldn’t help myself. It was all so good. When it came time for dessert, we had a choice of either apple pie or pumpkin pie. I couldn’t decide so I had both. A friend once told me that this is why we workout. So that we can enjoy food and not feel guilty about it. She was exactly right. Even though I felt like I overate, the scale barely moved.
Like they have for the past couple of years, Nestle Health Science sent another beautiful flower arrangement:
