James is still a little bit under the weather. What does that even mean anyway? Whatever he has been fighting since fall, he continues to fight. He has been having more good days than bad days, but something is obviously still bothering him. We started to wonder if maybe he had some allergies so we introduced a couple of allergy meds to see if that would help with some of his congestion. We weren’t sure that they were doing anything because his sats were hovering between 85 and 87. We’d like to see his sats in the 90s. After a couple of days off of the allergy meds his secretions were crazy. Stacy was having a hard time keeping up with them. She decided to add one of the meds back in to see if that would bring the secretions back under control. Around this same time, James went to the pediatrician, and he decided to put James on another round of antibiotics. All we want is for James to breathe better. Is that too much to ask?!
I feel like we went through this same thing with his seizures. We tried so many different treatments for his seizures and nothing seemed to work. Just like we want him to breathe better now, all we wanted back then was for his seizures to go away. I have good news on the seizure front. It looks like the VNS is working. James went to the neurologist this week to get the output of the VNS turned up a notch. The neuro said that the VNS is doing its job because the video EEG (VEEG) that James had this past May was much better than the one he had in May of 2012. He’ll have another VEEG in May of 2014, and hopefully that one will be even better.
There are a couple of more increases in VNS output that can be done before we reach the limit for James. We’ll do the first increase at the end of September and the last one probably in February, before his May VEEG. Assuming the seizures stay under control after the February increase, we can start discussing taking James off some of the seizure meds. With all the talk about medical marijuana lately, Stacy asked the neuro his thoughts about it for seizures. He said that it is a great option for some people, but not for James because it looks like the VNS is doing what it is supposed to do.
Is there a certain age where the kids become more excited about their birthday parties than the parents do? James will be 4 in about three weeks, and I think Stacy is more excited about it than he is. Granted, with James neurological deficits, we’re not sure if he understands what birthday parties are yet. The truth is, he may never understand. And that’s okay. We’ll be excited for him. Yes, I said we. I’ll admit I’m a bit excited myself. This year’s theme is Cars. How could I not be excited about cars? I think I mentioned this in the previous post, but we wish we could invite all of his fans to the party, but that’s a bit unrealistic considering he has 899 fans on Facebook. He did have an even 900, but we lost a fan somewhere. Not sure why anyone would want to stop being a Fan of James, but to each their own. Stacy’s parents brought back a sweatshirt and a monkey from their vacation, so maybe the coziness of the sweatshirt will make James feel better about losing that one fan.
