Nursing

With James being on leave from school due to illness and trying to keep him healthy, Stacy reached out to our insurance company to see if we qualify for nursing. All we really want is someone qualified to watch James for a couple of hours a week so that Stacy can get a break a get out of the house for a little bit. Well, insurance called Stacy and said that we don’t qualify for nursing because, “you are doing such a great job!” Really? The reason we don’t qualify isn’t because it’s not part of our insurance plan? The reason is because Stacy does too good of a job taking care of her son? What kind of reason is that to deny someone something they are entitled to? So, it looks like our options are: just accept that we are not getting nursing, appeal their decision, or have Stacy neglect James. Obviously that last option is not an option, which leaves us with accept it, or fight it. But Stacy might have found an alternative to nursing care.

Respite

Stacy has been looking into respite care as another option for her—and me, but mostly her—to get a break. She thought she had a company lined up to do it, but they called this week and said that James is too complicated for them to have on their caseload. The funny part is that the person that was going to watch James through this organization is the same friend that gave Stacy and I a real cool Valentine’s Day gift. More on this below.

Stacy placed a call with another respite agency, and they are coming out next week for a face-to-face interview. Fingers crossed that this one works out. We’re not trying to pawn James off on people. All we want is to have someone watch James for a couple of hours here and there so Stacy can get a little bit of a break. Is that too much to ask?

As I mentioned in previous posts, we have been keeping James in a bubble for a couple of months to keep him healthy and avoid all of the germs out there. There are some exceptions to this. James is allowed to leave the house for doctor appointments, and we have allowed a limited amount of people to come over to keep Stacy company so she doesn’t go out of her mind. As long as they don’t feel sick and haven’t been around somebody that has been sick.

James went to the pediatrician on Tuesday for a checkup. He said that overall James seems good. He wants James to get a blood test some time next month just to check his levels. He also wants him to see a urologist to look at his left testicle. It wasn’t fully descended when he was born, and after waiting to see if it would come down on its own, James had surgery in 2011 to bring it down, and tack it into place. The pediatrician was concerned that it might have worked its was back up. James has an appointment with the urologist tomorrow.

Date Night

One of Stacy’s friends gave us an awesome Valentine’s Day gift. She got us two tickets to the “I Love Lucy” musical downtown and she even came over to watch James. We were a bit nervous about this. Sure, Stacy and I had gone on dates before while someone watched James, but never that far away. The further away we got, the more nervous we got, but once the curtains opened, it was like we were transported to another time. Of course, we thought about James the whole time, but we also really enjoyed ourselves. It was something we both needed. Just a little break; a little space to breathe and relax. A HUGE thank you…you know who you are.

VNS

If you recall, James had a VNS (vagal nerve stimulator) implanted back in September to see if it would help with his seizures. Shortly after the surgery he started to get sick. Even though James wasn’t feeling well, the neurologist wanted to turn the VNS on when James saw him on October 9th. He set it to a very low setting and said that it shouldn’t cause James any additional issues because it was set so low.

He was wrong. James was a mess. After a couple of weeks of antibiotics, and x-rays, and trying to rule everything else out, we finally said enough and had the neurologist turn off the VNS on October 23rd. We could turn it back on once he got over whatever he was fighting. So here we are in the middle of February, and we think James is well enough to give the VNS another try. Thursday we’re turning it back on and we’re going to hope that James’ doesn’t revert back to the way that he has been for the past several months.

I think I have mentioned this before, but when James is sick, he doesn’t have seizures. These past few months his seizures have been pretty non-existent. When they turn the VNS on next week, we might not even know if it’s working. I mean, if he’s not seizing, and we have the VNS turned on, which is supposed to reduce or eliminate seizures, how do we know if it’s actually working?

CBD

While we’re on the subject of seizures, have any of you heard about CBD, medical marijuana, or Charlotte’s Web? Stacy showed me the video below, and I will admit, I am a bit skeptical. I smoked weed here and there in my younger days, but I never imagined that it could be used as a medicine to treat epilepsy. If the VNS doesn’t work out, we might give this a try.

Well, it’s getting late, and I have to work in the morning. Until next time, have a good one, and thank you all for your continued prayers and support. Oops. I almost forgot. If you’re don’t follow James on Facebook, you’re missing out. Stacy posted a video of James in his stander a couple of days ago. If you missed it, check it out here:

https://www.facebook.com/fansofjames/videos/10152537992390567