Christmas is almost here which brings forth a wonderful Christmas miracle for myself…the Elf on the Shelf gets to return to the attic! This hasn’t been the worst season with that confounded elf who shares the same name as an annoying purple dinosaur named “Barney”. It’s after midnight as I compose this blog, now that I typed about Barney the dinosaur, I’ll be singing that song the rest of the night & into morning I’m sure. My last blog about Jack’s latest health condition wasn’t the best, it has been one of more concerning times we’ve had with Jack since it was such a prolonged period. The lethargy, refusal to eat & drink, medication refusals, having his days & nights mixed up were very scary. I had reached out to his neurologist to come up with a game plan for labs but I didn’t think that would show anything. One of the conditions associated with Dravet that fits the symptom bill I just described are high ammonia levels, this can be measured with lab draws, which is not an easy task when you have someone that can be explosive & combative at the mere mention of a doctors appointment or going to the hospital. When Jack got into a similar situation back this summer, labs were all good, so my gut told me doing labs were not what was ailing Jack, I didn’t have any idea what was until about a week ago. Last Saturday night, Jack was his usual clingy-self when he’s not feeling great. I convinced him into riding around Ellerbe to look at Christmas lights, there was one caveat, I had to stop by Carroll’s Pantry for a scratch-off! Of course I agreed because he would be moving & that was something he hadn’t done in a while. Jack wasn’t into the lights at all, our outing was not any longer than 25 minutes. As soon as Jack got back inside the house, he vomited in my hands. Jack never vomits, he also used the bathroom three times that night which he never does either.
I’m so thankful he vomited that night! Things finally started clicking into place for me. My Grandma always said when people have hiccups it’s a form of indigestion. Well during the whole time of Jack’s mystery illness, he’s had the hiccups even with a sip of water. I am kicking myself constantly for not picking up on this sooner. The morning before he vomited, Lee fixed Jack a bowl of grits. Desperate to get calories in him, Lee added butter, heavy cream, & cheese to the grits. It was too much fat, that’s what made Jack vomit, the high fat aggravated his reflux even more. Back when Jack was on the ketogenic diet for treatment of his seizures, he had severe acid reflux because the diet was 90% fat. As he was weaned off the diet, he still had it, just not as severe. As he turned into a teen, he never had any further issues with it or so I thought. I wondered if acid reflux was causing Jack to feel as badly. Nearly every Dravet kid I’ve read about has reflux, most of them have a very high tolerance to pain & can’t tell Mama’s when something seems weird or painful. It’s up to the investigative mind of Mama to figure out most of the time. I started Jack on Nexium the next day & boom, we have a different child! I can not believe it took me so long to figure it out. Not once did Jack complain about his throat burning, belly hurting, esophagus hurting, some of the signs were there for me, but I couldn’t piece the puzzle together until he vomited. For now, Jack is doing much better eating-wise. Sleep is still another issue. A few weeks before Jack started to improve, he began waking up in the middle of night around 4am every morning, this has continued & he extremely annoying which anyone is when your sleep is interrupted. I’ve only been asleep a few hours by then, Lee being the early bird he is, rises at 5:30am every morning. It’s hard for him to get back to sleep once being disturbed at that time & me as well. It’s he’s hungry, needs a bandaid, can’t sleep, cold-all the while I’m laying in bed sweating like a whole hog (hormones & all). He’s got every blanket in the house piled on him, long sleeves & pants, & I only have on a tank nightgown with the fan going. The puddles of sweat are ridiculous! Then he starts wanting to get in the bed with us which is not anything I would wish on my worse enemy…maybe. As I write this blog, I have fixed fatback three different times for Jack. Thank goodness for an air fryer! He’s now going to be up all night thirsty, the cycle never ends!
I’ve been lacking in Christmas spirit this season. Largely due to Jack’s condition, I was actually worried he would end up in the hospital around Christmas. All I did was put up a tree. I had large hopes for my tree this season, I wanted it to be a pièce de résistance. I ordered some really pretty twinkling fairy lights for the tree before thanksgiving, they never came. They were lost or delayed in the abyss of a FedEx truck. Jack fell the night we got our tree & scraped his hand, he has yet to leave it alone which is one of the reasons why he’s been up in the middle of the night. Lee threw on plain clear lights which I’m not a fan of personally, now 1/2 of them have burnt out. I don’t even care & not even going to try to fix. Onto the next Christmas miracle, Jack received a very special gift from a family friend this week delivered straight from the North Pole! Now if this video doesn’t help you find the Christmas spirit, I don’t know what will. This was such a special surprise to Jack that he was thrilled to receive. Our friend knew the challenges we were having with Jack & his eating issues, so the box is full of food goodies & other Christmas treats that he has loved, especially the hat!
It’s such a challenge being the main caregiver to a special needs person. You are their everything while often times, you have to be the everything to everyone. You have to learn to build a life around the special needs person with the help of others. There are so many people that we depend on & helpers along the way. We truly appreciate the love gift Jack received. It blessed his day & ours, greatly.
Berry Christmas, friends! 💜💜💜