We’ve had a few weeks where we haven’t seen any doctors or had to deal with anything medical, other than therapy. It’s been nice. We’ve been working hard on motor skills, but diagnosis, bloodwork and doctors had been pushed to the back of my mind.
Feeding (solids) hasn’t been going great, but I haven’t been really stressing about it. Grayson ate some applesauce somewhat enthusiastically on Monday, but other than that, has barely touched his twice a day “meals” this week. I’m still giving him as much extra calorie formula as he will take, but he only actually finishes a few bottles entirely in a day.
Wednesday I got a call from the nurse at his pediatrician’s office. They had been sent some of the bloodwork results and wondered if our neurologist had called me. Umm…nope. Well, the chromosomal tests came back normal, but there were two things that were high, but the nurse didn’t have an explanation for them (not that I expected her to know what all this stuff means). So I called the neurologist and they called me back yesterday- with no explanation- that nurse didn’t even see the same thing on her report. Oh and the doctor STILL has not read G’s EEG, even though they billed insurance almost $3000 for it. Frustrating.
The pedatrician’s nurse asked me about how eating was going, and I told her not great, and I didn’t think that he’s gained much or any weight in the last month since our weight check. So then she called me back today, and Dr. D is referring him to a GI doctor. So here we go again- another specialist.
I weighed Grayson tonight right after his bath-we have a baby scale- 14 pounds, 4 ounces. This is 5 ounces less than he weighed a month ago. 0.3 percentile. So obviously something is wrong. An 8 month old should not go a month and not gain any weight, much less lose weight. An 8 month old should not be under 15 pounds. An 8 month old should eat more than 4 ounces from a bottle at a time.
So that’s it. I’m worried. Stressed. Sad. There are so many pieces to this puzzle but none of them are fitting together right now to make a complete picture.
AAAAAA! That’s it- my Friday night vent. Thanks for reading.