Medical Stuff

We’re still dealing with this “new James” that we don’t like. The high heart rate, congestion, seizures, and just all around unhappy. What we wouldn’t do to have our old James back. The one that was calm and mellow. We could even deal with the occasional curve ball he would throw at us. This is really starting to take its toll on all of us, especially Stacy since she is his primary caregiver.

We saw the neurologist last week for a checkup, discussed reducing some of his seizure meds and starting James on Charlotte’s Web CBD oil. The plan is to start at a lower dose for a couple of weeks and then increase the dose. James has a VEEG (video EEG) scheduled for June 8th so we’re curious to see if the CBD oil will have any effect on his seizures or not. Fingers crossed it does. Maybe one of the side effects of the CBD oil will be bringing back the mellow James that we would love to have back.

Last Saturday evening Stacy noticed some blood in James’ left ear. She cleaned it up but couldn’t see where it was coming from. When she put him to bed, she laid him down with his left ear up (he sleeps on his belly) and used our otoscope to look in the ear. She was able to clearly see his ear tube. Sunday morning, the tube was gone…or so we thought. He does tend to flip his head from side to side when he sleeps so it might have gotten jostled out. No idea where it went. Those ear tubes are so small it’s pretty much like looking for a needle in a haystack.

He was more cranky than usual throughout the day on Sunday. Motrin didn’t seem to be helping so Stacy thought we should try alternating between Motrin and Tylenol. I don’t think that helped either. Sunday afternoon Stacy looked at his ears again, and she was able to see the tube. It was still in there the whole time. We thought that maybe the tube falling out was the cause of the blood in the ear. But if the tube was still there, what the hell is causing his ear to bleed? We were able to get James into the ENT on Monday, and he said that there was no apparent reason behind the ear bleeding but did prescribe a steroid ear drop.

James also saw the orthopedist on Monday about his left hip. The socket didn’t completely form around the joint like it was supposed to and the hip is slowly working its way out of the socket. We’re not sure if this is the reason for James being so upset lately, but I would imagine it can’t be comfortable. We did discuss surgery to put it back into the socket…proximal femoral osteotomy…which is a 4-hour surgery.

School

I don’t really have much to report as far as school goes since he hasn’t spent much time there lately. Whenever we get this high heart rate/congestion/crankiness issue under control, then he can spend more time in school where he belongs. Stacy did get a call last week from the mother of one of the girls in James’ class to see if they could setup a play date for the weekend. Unfortunately, we had some things going on and couldn’t get together, but Stacy told the mom that we could try to arrange something at a later date. I don’t think we’re ready for this. A girl asking to hang out with James?

I guess this could fall under school, even though it wasn’t James’ school. It was at the college that I work at. Back in November Stacy, James and I were invited to speak to a class of freshman about why James is the way that he is, his stroke, the cerebral palsy, feeding issues, etc. One of the students in that class was so moved by James and us that she started a new student organization called “Acts of Random Kindness (ARK)” and are planning an event dedicated to us this fall. In an email she wrote to me, she said:

“You and your family are an inspiration to me, and I wanted the first event my club would do to be dedicated to you and your family. You and your family were the ones to inspire me to start the Club.”

We have always asked ourselves the reason why James was born the way that he was and why he has so many medical issues. Maybe this is the reason: to inspire others to make this world a better place.

Mother’s Day

Of course, I can’t forget to say Happy Mother’s Day to the beautiful woman in the above picture. Stacy, you are the most incredible woman I have ever met. James is lucky to have you as his momma! I don’t know how you all that you and still function like a human being. I would be a complete basket case and be walking around like a zombie.

Stacy has joined several groups on Facebook for parents of special needs kids and has become friends with so many other amazing moms just like her. I am thankful for these groups and the friends that she’s made. I think it helps her not feel as alone in all of this and also offers a place to ask questions and bounce ideas back and forth. Unfortunately, being a part of these groups has also show her (and me) just how fragile life is. We have known or heard about too many kids that have passed over the last few years. The most recent happened just this past week. I won’t mention her name, but it is someone that James met a few years ago. Stacy thinks that they had a special connection when they met and that it was “love at first sight.” Her mom sent James her blanket to comfort him. You can almost see the sadness in James face that she’s gone.

It is a bit of a dark picture, but Stacy put the blanket on the headboard of James’ bed so that she will watch over him as he sleeps.

To all of those moms (and dads) that have lost a child this past year, I want to say how truly sorry I am for your loss. I wish I could find some words to comfort you, but I have no idea what it feels like to have a loss that great. Just know that we keep you in our thoughts and prayers.