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School

Yes, I know it’s July, so why am I posting about school? Shouldn’t James be done with school for the summer? Yes, the normal school year ended on June 1^st, but we have enrolled James in ESY (Extended School Year) …aka summer school. It’s not because he was falling behind or anything like that. We just think that it would be good for him to continue to be with some of his peers, and to also get some therapy over the summer instead of spending most of the summer sitting home watching TV and movies. He did have a few weeks off between the normal school year and ESY to do that.

Two weeks ago, they had a couple of those themed days where they wore outfits based on whatever the theme was for that day. That Tuesday was Sports Day and James went in some Cubs gear:

Wednesday was Hawaiian Day. I think we need to get James a nice Hawaiian shirt. Something Magnum P.I. would wear.

Thursday, they had a 4^th of July parade around the school.

This past week they didn’t have any themed days planned but decided to make Thursday “Water Day”. James went to school in his swimsuit.

Medical Stuff

Stacy posted a brief synopsis of James’ medical history on his Facebook page a couple of days ago and it made me pause for a moment and say “damn, this kid’s been through a lot!” I guess I don’t really think about all he’s been through. We’re kind of at the point where we just take one day at a time and one issue at a time. But when you stop and look back at all of those issues…WOW!

So here is James in a nutshell:

On August 29th, 2009, at 12:30am, James was born via emergency c-section due to lack of movement and the doctors thought maybe he was in distress. When James was born, he didn’t cry, had a two-vessel cord, low muscle tone but was shaking his arms. He went to the Lutheran General NICU for further examinations.

James spent 2 months in the NICU & while he was there, we found out that he:

• • • Had a stroke during the 1st trimester
    • No suck/swallow reflexes; he has a g-tube to eat
    • He has a blood clotting disorder called Factor V Leiden
    • His optic nerve in his left eye never fully developed and he is extremely far-sighted
    • He has a chromosome disorder called 22q11.2 duplication which means he has an extra copy of a small piece of chromosome 22
    • He has severe reflux and had a surgery called Fundoplication to prevent the reflux.

Since October 2009 he has been:

• • • Diagnosed with Infantile Spasms, a catastrophic form of Epilepsy and has been on 10 different anti-seizure meds. Nothing has worked so far.
    • Diagnosed with Quad Cerebral Palsy in September 2010. This means all 4 limbs are affected.

James still cannot hold his head up, sit, stand, walk, eat by mouth, and is always hooked up to a monitor to show us his O2 levels and heart rate. James’ brain is consistently seizing, and due to the increase of seizures, he needs frequent suctioning. James will always need someone with him 24/7 but does not qualify for home nursing assistance. He had been admitted to the hospital every November for pneumonia since birth. He had a VNS implanted into his left chest cavity in September 2012. Seizures are still happening anywhere from 80-100+ a day. James was admitted into the hospital October 2012, April and October 2013, April 2014 and February 2016 for pneumonia. This is a struggle we face every year with the change of season.+

Like I said, this kid has been through a lot, but he just keeps on going. Of all his struggles, I think the one that is hands down the worst to deal with is the epilepsy. It’s hard to watch your kid have seizure after seizure and not be able to do a damn thing about them. We have tried so many therapies, drugs, diets, but nothing seems to work. As Stacy pointed out, he can have upwards of 80 seizures a day. She wanted to show people what James’ seizures look like, so she posted the video below on his Facebook page. He has one smaller seizure at the beginning of the video, then seems to be calm for a few minutes before a bit one strikes at the end of the video. You can hear how upset he gets during that second one.

We started James on Charlotte’s Web CBD oil a few weeks ago with high hopes that it was the cure that we had been searching for, but unfortunately it is not. I am not going to say anything negative about Charlotte’s Web. We know people that it has worked for; it just didn’t work for James. We are planning to start James on Haleigh’s Hope CBD oil next week to see if that does anything for him.

This coming Thursday he will be having surgery to remove some of his salivary glands. Other than the seizures, one of James’ biggest struggles is that he is unable to manage his own secretions. We have to suction him frequently throughout the day to keep his nose and throat clear so that he can breathe easier and doesn’t aspirate on those secretions and get pneumonia. We’ve tried a few different medications to try to reduce the amount of secretions he produces, but surgery seems like the next logical step. I can’t think of the name of the surgery off the top of my head, but I will discuss it in the next post. Please say a few prayers for James on Thursday morning. He’s been through a lot of surgeries and has been fine for every single one, but it doesn’t get any easier. Stacy and I will still be nervous wrecks.

Upcoming Fundraiser

In a post I wrote back in May, I mentioned that Stacy, James, and I gave a little talk to a freshman class at the college that I work at, and that one of the students in that class was so inspired by our story that she started a new student organization called Acts of Random Kindness (ARK). She wanted their first fundraiser to benefit us because we were her inspiration. It looks like they are planning something for the fall:

https://www.facebook.com/ECARK/photos/a.1658057304446411/1709396419312499