Happy St. Patrick’s Day – A Little Bit Late

I got lucky when I met Stacy. Very lucky. Those that know her—and those of you who have read this blog for any amount of time—know that she is an amazing person. What did I do to deserve her? I have no idea, and I may never know. Her parents are pretty awesome, too, which is a bonus. I’ve heard so many stories about how bad in-laws are. Not the case here. I love Stacy’s parents. Her mom is an awesome cook, which is another bonus because I love to eat.

Being of Irish descent, St. Patrick’s Day is kind of a big deal in Stacy’s family. Corned beef, cabbage, potatoes, soda bread, the whole nine yards. You know how you want to take a nap after you eat a big Thanksgiving dinner? I feel the same way after St. Patrick’s Day dinner. It only happens once a year, so I tend to stuff my face until I feel like I’m going to puke. And having the weight of James on my stomach didn’t help.

Seizures Suck

I don’t know how to say it any nicer than that. They just suck. Stacy uses this app called TimeHop that works with Facebook and shows you things you’ve posted on this date in years past. She’s had a couple that have popped up over the past couple of weeks of James lifting his head. Unfortunately, he doesn’t do that anymore. I honestly can’t remember the last time he was able to lift his head. Maybe a year ago.

I could probably go back through all of the videos we’ve taken of James, but there are so many it would probably take way too long. For now, let’s just say it’s been quite a while since he’s been able to lift his head. Stacy and I believe that it’s the seizures that took that ability away from him. Seizure might as well be a four-letter word in our house.

School

Not too much to report about school. They had a little St. Patrick’s Day party. Does his mustache make him look older?

This week was Spring Break, and I really think we should have gone somewhere warmer. Doesn’t feel or look like spring around here. Does Mother Nature not know that it’s the end of March, the weather should be getting warmer, and that I’m itching to get the roof on this amazing pergola that Make-a-Wish build for us?

James did have a bit of a rough start to Spring Break health wise, but I’ll get to that in the next section.

Health

I’ll get to James’ recent health issues in a minute. But first, we took him to the dentist on the 19^th to have a tooth pulled. One of his top front teeth was really loose and we were worried that it would fall out and get lodged in his throat. We wiggled it as much as we could, but we just couldn’t get it to come out, so we thought the best bet was to take him to the dentist and have it pulled.

The other top front tooth was a bit loose, too, but not nearly as loose as the one we were going to have pulled. The dentist basically said, “well, since you’re here, and the other one is going to come out eventually anyway, might as well pull that one, too.” Instead of having just one tooth pulled, James came home with two less teeth. The Tooth Fairy was very generous because of the extra pain and suffering James had to endure.

Now, about his health…

On Monday he started having his digestion issues again. He was double breathing, sounded a bit congested, and his stomach juices were coming back out. (Sorry if that grosses any of you out, but that’s what we’re dealing with.) We were trying to avoid another trip and/or stay in the hospital so we switched from his normal formula feeds to Pedialyte to keep him hydrated and to give his body time to digest the feeds that were just sitting in his belly.

Tuesday was primarily all liquid feeds (Pedialyte), but we decided to try a normal formula feed that night at a little bit of a slower rate. He seemed to handle it okay, but we were still nervous about pushing him too fast.

On Wednesday the plan was to give him Pedialyte for his first two feeds, and then regular formula for his third and fourth feeds. That first feed went okay, but it was interesting to watch the numbers on his pulse ox change shortly after the feed started…his sats dropped a little bit and his heartrate went up. He also started to get a bit congested.

Things improved over the next few hours, so we went ahead with the original plan of giving him another regular feed. Apparently, his feeding pump had other ideas. After a feed finishes, we always give James some water via the med port on his g-tube extension. Upon opening the med port to give him water, formula started pouring out. We’re not really sure what happened. The g-tube extension was clamped, so the only way that formula could be pouring out of the med port in the extension is if it was coming out of the feeding bag, which is attached to a feeding pump. It was almost like there was a block somewhere and the formula was just backed up until the med port was opened. What’s weird is that the pump usually beeps and says “No Flow” when it detects a blockage. It didn’t beep like it was supposed to, so we weren’t sure if he got any of his food or not. Looking at the level of food left in the bag it didn’t appear like he got much at all. After making sure there weren’t any blockages, we started his food again…at 8:45 pm. Fortunately, it went thorough this time, but unfortunately, James needs some digestion time after he eats before he can go to bed. Needless to say, it was a late night for him and Stacy.

The remainder of the week he has been slowly getting better at handling his feeds. We still don’t know why he’s been having so many feeding issues lately. As the pediatrician said a few weeks back, this may just be James’ new normal.

Cerebral Palsy and Epilepsy Awareness Days

The entire month of March is Cerebral Palsy Awareness Month. But there is also Cerebral Palsy Awareness Day on March 25th and Purple Day for Epilepsy on the 26th. Since James suffers from both, we celebrate both. Celebrate? That’s not the right word, is it? We sure as hell don’t celebrate CP or seizures in this house! Observe…is that a better word? Or participate in? I don’t know, but you understand what I’m trying to say.

A Heartfelt Thank You

We wanted to say thank you to James’ one-on-one nurse at school. She’s become more than just his nurse. She’s become a friend, and almost like a second mom to James. We love the way that she just adores him. Her own son had a birthday party yesterday and she invited James. Although James can’t do most of the things that normal kids can, we appreciate when people still include him. All we want for him is to have the most normal life possible, and what kid doesn’t enjoy a good birthday party?

Because it was a Cars-themed birthday, James had to wear his Cars shirt.

You may have noticed that I have been very cautious at posting pictures with other people in them. If I post pictures that do have people in them other than our family, I obscure their faces. I am going to make an exception and post an unfiltered picture of James and the birthday boy. Hope his mom doesn’t mind.

Thanks again for inviting James. You have no idea how big of a deal this was for us.