Hey all. We’re still here and doing good. I was preparing to write a post on the 17th but realized that there wasn’t much to write about so I decided to wait another week so that I would hopefully have more content to write about. Nope. Nada. Nothing. Instead of waiting another week I decided to just throw something up so that you wouldn’t start to worry that something happened. I assure you that everything is a-okay over here.

Health

Normally we would be happy that James is healthy. But when you get a letter in the mail from palliative care informing you that they are discharging him because he’s been so healthy, it triggers mixed emotions. On the one hand, we’re happy that he’s staying healthy, but on the other, we’re going to miss having that safety net. It was really nice to be able to call them any time day or night and have a nurse come over to assess the situation and give us some guidance.

The discharge letter reads:

“Dear Ms. Fulkerson,

Thank you for entrusting xxxxxx Care to provide care and support for James. As we have discussed, based on recent clinical assessments of James’s care team, his condition and symptoms are no longer requiring management by the Palliative Care team. The effective date of discharge was 3/29/2022, after which he will be monitored by his Primary Care Doctor and Specialists.

We understand that discharging from Palliative Care can come with mixed emotions, but we are happy that James qualifies for this next step since he’s doing well. We hop that he continues to stay comfortable with the excellent care that you are providing him.

If you have any questions about our recent discussion or the discharge from Palliative Care, please call us at 844-xxx-xxxx and ask to speak to your pediatric supervisor. And of course, should James’s condition change at any time in the future, you or any of his doctors can contact xxxxxx Care so we can explore resuming services.”

We weren’t surprised by the letter. Stacy had been talking with palliative care about James being discharged from their services, so we knew it was coming. The letter just makes it real I guess. It will take some getting used to. James has been under their care for 12 years. Now we feel like we’re kind of on our own. We still have all of James doctors on call if needed, but it was nice to be able to have a nurse from palliative care stop by the house and listen to him whenever he had one of his respiratory episodes. We would like to thank all of those nurses who helped us through the past 12 years.

In other medical news, James had his VNS turned off on March 31st. When James had a 24-hour VEEG at the hospital in mid-December, the neurologist took a look at the stats on his VNS and saw that the battery life was somewhere between 11- and 25%. The neuro decided to reduce the VNS settings a little bit to help improve the battery life while we arranged a date for surgery to get the VNS replaced. If James’ seizures increased with the lower settings, we could always have it set back to the original settings. We did not notice any increase in seizures, so when James had a follow up with the neurologist on the 31st, she decided to shut it off completely to see if the seizure return. That was three weeks ago, and he seems to be doing fine without it. We’ll keep it turned off unless we start seeing seizures and then we’ll plan to have it surgically replaced.

Easter

Our township’s Disability Services department had an Easter Egg Hunt for the kids with disabilities in early April. One of the eggs that James found had a golden ticket in it and he won an Easter basket with stuffed bunny and some candy.

Our Smart Dog

I have to share a story about our other kid, Maggie. She really is a smart dog. Just how smart is she? First, a little back story. Maggie was found as a stray in Alabama, was brought up to Chicago, and we adopted her in October of 2020. The rescue believed she was about 5- or 6-years-old when we adopted her. She had obviously never been formally trained to go outside to go to go potty, so that was one of the things we had to teach her. We gave her a couple pieces of dry dog food as a reward every time she went outside to go potty. It got to the point where she expected her reward whenever she came back in and would sit and wait for it. We just continued to give it to her.

As time went on, we realized that we needed some sort of way for her to alert us that she had to go out to go potty. Stacy bought a “doggy doorbell” on Amazon so that Maggie could “ring the bell” whenever she had to go potty, and we could hear it no matter where we were in the house. It took a little bit of training, but Maggie eventually learned how to use it.

Now we get to the part where Maggie is smart. A few weeks ago, she rang the bell and Stacy went to put her out. Maggie didn’t go out, but just stood there looking in the direction of where her reward treats were. Stacy told her “no, you need to go potty in order to get a treat”. Now get this. Maggie goes into the kitchen, drinks a bunch of water out of her bowl, goes back and rings the doorbell, goes out to go potty, and then comes back for her treat. Now tell me that’s not a smart dog!