Made of Gray

Oil, Trips, Liver & Applesauce

Holly D Gray4 Comments
Yesterday, we loaded Caleigh up once again and headed to Fort Worth to see our GI doctor. This once a week thing has become quite the tradition, but we will be super happy when we can take Caleigh to the zoo instead of the doctors office.

This office visit was probably the best we've had in a long, long time. It's time to start increasing Caleigh's formula intake. We will go up 1ml twice a week. Today we are at 11ml an hour and doing wonderfully. We also got some lab work back and Caleigh's liver numbers are now back to normal. Direct Bili 0.2, ALT & AST are normal as well. Her liver has bounced back after this last surgery and we feel very blessed. It was decided that we should raise the Imodium dose and because of that increase Caleigh had her first 'pudding' stool this afternoon. I know, I know how many ways can you describe a poopie diaper, right? She seems to be tolerating the increase and has been in a pretty good mood today.


Eric and I broke the news to our GI doc that we had started giving Caleigh Oregano Oil for her bacterial overgrowth. He was impressed with the decrease in stools per day. Also he was excited about how well her diaper rash had cleared up. When he listened to Caleigh's belly with the stethoscope, he heard wonderful bowel sounds that were normal in tone. (When you have bacterial overgrowth the sounds are higher pitched) So he was very impressed with the improvements that Caleigh experienced and wanted to get the information about the oil so that he could do a small study himself. Good thing we got approval and pushed back using antibiotics a little longer.

On to the fun stuff.....So Caleigh is scheduled for a swallow study at the end of August. This is where we will see what Caleigh's baseline is as far as what thickness of liquid & food by mouth she can take. It will show us if she is aspirating her food and if she gags and chokes then we will at least know what to work on as far as feeding therapy. Other than the famous Popsicle Day, Caleigh hasn't had any food & she hasn't had any liquid since December. So how is she supposed to be able to swallow when she doesn't know what food is and what to do with it? That's what I asked our doctor and then suggested that we start introducing foods as tastes until the swallow study. He suggested Ketchup, so last night we tried it........and Caleigh hated it! His thought was that the taste will stay with her & it will make her salivate more causing her to learn how to swallow more at a time. Well, the Ketchup wasn't a big hit so tonight I tried applesauce. Caleigh seemed to really enjoy it and she probably got more than a tastes worth. She was chewing away and of course had it everywhere. Caleigh is by no means eating food by mouth yet, but this is a positive step towards her eventually doing just that.

Ketchup Face

Over the past week we have been the traveling Gray Family. Caleigh was able to go visit family at their house, a quick stop at Old Navy and we actually took her to a restaurant for lunch. Mexican food of course. Caleigh wasn't impressed and she slept the whole time. There were little things here and there that we had to overcome, but at this point something always comes up when we're out of the house. It was really nice for us to be able to get out as a family and do 'normal' things. This weekend we have a trip to Grammie & Popaws & a trip to Cousin Brody's birthday party, planned.

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