James Will Be Turning 5 in 5 Weeks!

James’ 5th birthday is just around the corner and it’s going to be a superhero theme. Here’s a sneak peak of the invitations:

In the past we’ve planned James’ birthday parties, but year will be different. I mentioned in a previous post that James was selected as the 2014 Face of Epilepsy for the Epilepsy Warriors Foundation. The founder of that foundation has enlisted the help of Party with the Warriors to plan his party this year. Icing Smiles will be doing the cake. Thank you to everyone who is working to put this party together for our little superhero. It should be an awesome party!

Even though the party isn’t for another month, Stacy already has her shirt ready to go. She bought the shirt on the left and modified it to make a tank top.

I suppose I should start thinking about what I will wear. I usually put things off to the last minute so I will probably be scrambling the day before the party trying to find a shirt!

School

James is still doing well in summer school, although we need to work on keeping him awake. His nurse snapped this pic of him dozing off during social group:

Wednesday was sports day at school, so James got all dressed up in his Cubs gear.

Although James is doing well in school, Stacy is struggling a little bit. With each passing day that James is in school, it’s one day closer to James moving onto kindergarten in the fall. She was a bit emotional when James started preschool two years ago because it would be the first time that James was away from her and in the care of someone else. That’s understandable, right? I think most mothers have similar emotions regardless if their child had special needs or not.

When James goes off to kindergarten, he will be gone for a longer period of time, and that’s what she’s struggling with. Fortunately, his current nurse will be there with him, and she has been amazing. It’s still going to be a bit rough on Stacy, though. She’s not one to sit still so she’ll have to find things to keep her occupied while James is in school.

James Went to Germany

Last fall Stacy signed up for this I Run 4 page where they match up runners with those who are unable to run—like James. Shortly after she signed up, James was matched with an amazing runner. She doesn’t just run marathons, but she does some pretty extreme long distance runs as well. How extreme? She posted this in the I Run 4 Michael Facebook group back in September:

“I ran my farthest distance this past Saturday at the Hinson Lake 24 Hour Ultra Classic and was able to run 79.04 miles. I have to say that I was able to dig a little deeper because I told James that I would try to beat my previous record of 76 miles and I knew that I had my little buddy and his family cheering me on. I have also set a goal, like many others, of running the distance from our homes (845 miles) as quickly as I can. James, I only have 765.96 miles to go.”

She ran 79 miles in 24 hours. That’s just crazy! In case you’re reaching for the calculator, I’ll save you a bit of time. She averaged just under 3.3 miles every hour.

She is currently over in Germany and sent Stacy this picture with a note:

“My morning run today in Germany, and I was thinking about my little buddy.”

So I guess you could say that James took a trip to Germany.

A Little Bit of a Rough Weekend

James woke Stacy up at around 2:30 am Saturday morning. Although his room is right across the hall from ours, we still use a video baby monitor so that we can see and hear him. He was a bit congested and the noises he was making while he was trying to breathe were loud enough to wake Stacy up. When she went to check on him, his sats were in the low 90s, his heart rate was around 150, and he was double breathing. She got him out of bed to give him one of his compression vest treatments and tried a cough assist treatment as well.

Stacy had to go to a wedding, so she put me in charge. His number stayed pretty much the same while she was gone, and tried another vest treatment when she got home and before she put him to bed. I think that’s all he needed. He had a good night’s sleep last night and woke up this morning with good numbers—higher sats and lower heart rate—and he sounded less gunky. I really think he is smarter than we give him credit for. I think maybe he was faking it so that mommy would stay home from the wedding. Let’s just hope he’s truly done with this and doesn’t have a repeat episode in the next day or two.