Just a quick update because I am too exhausted to write many details:

Grayson is not getting better. His GI and Swallow Study results are normal, but he’s still vomiting every time we give him food. We are doing a calorie count today, and so far our count is abysmal. What is going in is coming up, and most of the time he’s refusing to take the bottle and any solid food altogether.

He will most likely be getting an NG tube (feeding tube through the nose) in the next day or two. It’s a short term solution, but he needs nutrition. He continues to be on IV fluids to stay hydrated, and is taking Prevacid, Zofran, and his seizure medication.

One of the labs taken the other day came back showing his thyroid levels are on the low end of normal. Endocrine has been informed and may be getting involved. We are still hoping to see a geneticist to hopefully get somewhere on determining the root cause of all this.

Through all this, Grayson has been amazing. He’s sleeping a lot, and when he’s awake, he just wants to be held. I know he must be so confused, hungry, and exhausted. But I can still get him to giggle every once in awhile, and he takes the constant beeping, poking, prodding and IV adjustment without too much protest.

Please continue to pray for answers!