Grayson saw his GI doctor this morning. He has been vomiting a lot again (3 times just this morning) and not only is this awful for him, health and comfort- wise, it’s just been a pain. I’ve been getting him dressed at the last minute before we go anywhere and covering him with a huge bib and blanket in the car, just in case. I have to wash his crib sheets multiple times per week (and anyone with a baby knows how annoying making up a crib is), and sometimes have to give him baths in the middle of the day. It’s annoying.
Since Grayson got his tube a year ago this month, his weight gain has been steady and consistent. He’s never been above the 6th percentile, but that’s a lot better than being below 0, which he was for a long time. But today when the nurse weighed him, he was down to 22 pounds, 4 ounces. Not even a month ago, he weighed 24. I got a little panicky.
The doctor wasn’t too concerned about the weight loss, but did agree we need to do something about the vomiting. Next week, if we can get on the doctors schedule, Grayson will be getting a GJ tube to replace his G tube. The GJ tube will bypass the stomach so his formula and medicines will go directly into his intestines. This should solve the vomiting problem. The big negative of this tube is he will have to be on continuous feeds again- this means attached to his pump 24 hours/day. NOT FUN. The tube will be placed under anesthesia but should be a quick and relatively easy procedure. However, anytime Grayson is under anesthesia, he gets sick with respiratory issues. Bleh.
I also had an OB appointment this afternoon. My doctor cried and hugged me when I told her about Grayson and his Leigh’s diagnosis. Then I cried when I talked about the baby and my fears about it being healthy, and she cried and told me this baby is a gift from God. I told her I absolutely agreed, but that God has a quirky sense of humor when it comes to my family. I almost had a panic attack when she measured me for the first time today. Our first “clue” something wasn’t right with G was I measured small in my pregnancy, although that started later- around 30 weeks (I’m 22 weeks now). Thankfully, today, I measured on track and heartbeat was perfect. But again, perfect measurements and heartbeats don’t mean much to me these days. I guess that’s just how it’s going to be.
On a sort of unrelated topic, I have a friend whose son also has Leigh’s and their story is featured on ABC News today! Her son sees the same doctor as Grayson and she’s quoted in the story too. Click here to read their story. Note: The article mentions a clinical trial for a drug that has shown to reverse the progression of Leigh’s in some patients. Unfortunately, we found out last week that Grayson does not qualify for the trial at this time because he doesn’t have a genetic diagnosis. We are extremely disappointed by this news, but we hope the criteria will change at some point and he can get on the trial.
There is so much in my life right now which I have ZERO control over. And there are so many other families in similar situations- life is just hard. Thank goodness for prayer, family, friends, carbs and cheese, and mindless television. Happy Wednesday friends!