Sorry that’s it’s been about a month since my last post. I was waiting until I had enough stuff to post about. I promise I’ll do my best to keep this post a little more organized than the last one. That was messy, and it’s really been bothering me. I’ve gone back to review it a couple of times, but just couldn’t find a way to make it any less of a mess. I even thought about deleting it, but decided to leave it, move on, and try to do better.
Happy Birthday Mommy
Let’s start this post by wishing Stacy a Happy Belated Birthday. Her 38th birthday was about three weeks ago, but she’s such an amazing woman and mother to James that she deserves to be celebrated every day of the year. We used the number 8 candle for James’ 8th birthday and it is now retired and put away in James’ memory box, so we had to improvise a bit with candles for Stacy’s cake….six plus two equals eight so we used candles 3, 6, and 2.
Drug Study Update
Moving onto the other amazing one in the family, James has really been kicking ass in this seizure drug study. Or is it the drug that’s kicking ass? Either way, we’re very pleased at how well this drug study has been going.
We’ve been using the Seizure Tracker app on our phones to keep track of his seizures throughout the day. It’s a really easy app to use and while it allows you to track so many different things, the main ones we are concerned with are the date, the time the seizure happened and the length of the seizure (hours, minutes and seconds), the type of seizure, and any notes about the seizure. When synced with their website, we can export the data into an Excel spreadsheet which makes it easy to fill out the seizure journal we have to keep for the drug study.
The picture below is just a little snippet of that spreadsheet that Stacy modified to show the then and now. A couple of things to note about the spreadsheet… The first column is the date and time of the seizure. The second and third columns are the length of the seizure (minutes and seconds). All of James’ seizures are short and are over in a matter of seconds.
You may also notice that in addition to seizures, we also track “clusters”. Some people consider a cluster as 2 or more seizures within a 24-hour span. For James, a cluster is considered 2 or more seizures in a 5-minute window. So, as an example, in the picture below, James had a seizure at 8:10 pm on August 9th that lasted 4 seconds. He had another 4 second seizure at 8:14 pm. Because both of those seizures happened less than 5 minutes apart, we consider it a cluster. Same thing with the seizures at 8:29 pm and 8:33 pm. That is considered another cluster. I am not sure why Stacy highlighted the 8:44 pm seizure as being part of the 8:29 to 8:33 cluster. Could have just been accidental.
On August 9th, the day before he started taking the drug, James had 72 seizures. Seventy-two seizures in one day! Stacy forgot to input the clusters for August 9th, which was 23. Now here we are just a couple of months later and he is only having 1 to 3 seizures a day an no clusters!
We’re trying to be cautiously optimistic because we’ve down this road before. There have been a few other treatments we have tried that started out reducing his seizures, but for whatever reason, the treatment became ineffective and the seizures came back. We’re hoping that we’ve finally found something that will knock these seizures out for good, but we’re also hoping that we don’t get let down…again.
It has been a bit of a pain in the ass to drive into the city every couple of weeks to meet with the neurologist, but the results are so worth it. Stacy will probably tell you that the worst part of the appointments is waiting for them to bring up a new batch of meds. Stacy took this selfie of her and James a couple of weeks ago while we were waiting for over an hour for the meds to come up so we could go home.
Clothes
As if James doesn’t have enough shirts, we’ve added a couple of more to his collection. This first one was a gift, and it’s awesome. With all of the newspaper articles written about him, his Facebook fans, and the readers of this blog, he’s become a little bit famous. It’s a bit funny sometimes when you’re talking to someone who you never met and James comes up in the conversation, and they respond with, “oh, you’re James’ mom?” or “you’re James’ dad.” Yes, this has really happened!
The second shirt is the one that we ordered from Pediatric Stroke Warriors with James’ name on the back.
Friday, October 6th was World Cerebral Palsy Day, so we all wore green, which is the designated color for cerebral palsy awareness. I had already left for work so I wasn’t in the pic, but I was wearing green, I swear.
The final clothing item on my list is to give a shout out to Target for starting to sell adaptive clothes for kids with disabilities. We wish these were around when James was younger. We would have bought a few of the onesies with g-tube access. Stacy is thinking about buying an adaptive coat for James to tryout this winter. Here’s a link to all of the Cat and Jack adaptive items they sell:
https://www.target.com/s?searchTerm=cat+and+jack+adaptive
Just Some Random Pictures
I couldn’t figure out a way to incorporate these pictures into this post so I’m just going to throw them here. No words. Just pictures.
Fundraisers
A few weeks ago Stacy and James met another special needs mom and her daughter (aka James’ girlfriend) at a softball game fundraiser between the police department and fire department. He was able to squeeze in a little bit of belly time before the game.
As I end this post, I need to ask for a bit of a favor. A lot of you have been quite generous in helping us out over the years, so I’m a bit hesitant to ask more from you. We recently found out that one of our favorite nurses when James was in the NICU has had a bit of a rough year with her own medical issues. She had emergency open heart surgery almost a year ago and was out of work for about four months while she recovered. She recently underwent another emergency surgery to replace the ring that they put around mitral valve during the first surgery that had come undone. She will likely be out of work again for another few months as she recovers. A fundraiser has been setup to help her with medical bills and other expenses while she is out of work. I know it’s a big ask, but if you can help out in any way, we would appreciate it. As a NICU nurse, she helps keep the smallest and weakest of babies alive. She deserves all the help she can get. Thank you.
https://www.freefunder.com/campaign/sarahs-heart
