Continuing GI Issues
“This kid is going to make be 80 before I am 40.” Those were Stacy’s words at the beginning of last week. James has still been struggling with GI issues. One day it seems like he’s heading in the right direction and is able to tolerate more formula than the day before. Then the next day he can’t. It’s the whole two steps forward, one step backwards. We’re kind of used to it, though. We try to push him in the right direction, but sometimes we push him a little bit faster than he can handle. So, we take the step back, let him regroup, and then continue pushing forward.
It’s times like these that I wish I wasn’t such a heavy sleeper. There could be bombs going off outside and I would probably sleep through it. Stacy is just the opposite. If a pin drops on the bathroom floor, she wakes up. She’s been setting alarms for herself to get up and check on James throughout the night to and see if his stomach needs to be drained. I don’t remember waking up to any of those alarms. Apparently, James is more like Stacy than me. She said that she can hear him start yapping in his bedroom across the hall within seconds of her alarms going off. Doctors have questioned what James hears, or if he can process what he hears, but I’d say his ears are just fine.
VEEG Canceled
James was supposed to have a VEEG this past Tuesday to see how his seizures look compared to last year, but his GI issues are really messing with his seizures. He normally has around 30 seizures a day when he’s healthy. Since he’s been having the digestion issues, he may have 30 seizures one day, but then only 7 the next. We’re planning on starting Charlotte’s Web CBD oil soon, but want to get a good, accurate VEEG before we start it so we can see if the CBD oil is doing anything at the next VEEG. As soon as he’s healthy again, we’ll reschedule the VEEG.
School
Other than his GI issues, he’s been relatively healthy, so he has been going to school with a modified eating schedule. Not much has happened at school, but Stacy did get a call from his teacher on Tuesday. About a month ago when James was out of school for a couple of weeks with pneumonia and RSV, the school principal called his teacher into his office and suggested that they do a dinner drop off for us. James’ teacher called to say that the school has five meals for us! I wasn’t there when Stacy got the call, but she told me she broke down in tears. The sheer generosity that this school has shown our family has been amazing!
These are just some random pictures that Stacy took after she picked him up after school one day last week:
Trisomy 18 Awareness Day
Today, March 18th, is Trisomy 18 Awareness Day. A day that fills us with mixed emotions. Our first son, Jackson, was diagnosed with Trisomy 18 and passed away before he was born. Words could never fully express the feelings that Stacy and I went through knowing that our first child probably wasn’t going to make it. So many nights just laying in bed crying, asking why, and saying our goodbyes. We never got a chance to see him or hold him.
Shortly after his passing, we got pregnant with James. This is where the mixed emotions come into play. If Jackson didn’t have Trisomy 18 and didn’t pass away, then James wouldn’t be here.
If you are interested in learning more about Trisomy 18, please visit the Trisomy 18 Foundation website. Here is a short video with the founder of the Trisomy 18 Foundation with a little bit about what Trisomy 18 is, and why she started the foundation:
