So we just got home from our normal GI's office for her check-up. They have not seen us since we have been to the allergist (2x) & the other GI. We updated them on her allergies and what we are currently doing with her diet.
PTL her weight is back up to 18lbs, and she finally grew in height again a whole 1/2 inch! She is now 28 1/2" tall. Last time we were there her weight & height flatened on the curve which is NOT GOOD! She is still below the curve, but she is back to following a curve pattern which is GREAT NEWS! Now we just need to pray that this trend continues. Back on May 26, she weighed 18lbs 2oz which is the highest she's ever been. As for her height/weight proportion she is great as she has always been. She's just little in every way, but she has never looked unhealthy. This means she has almost finally outgrown her baby carrier. I guess it's not a bad thing that she was in it for 15 months! :-)
So since her weight is back up, and she is drinking more liquids (formula & water) they are going to hold off on the NG Tube for now!!!!!! AMEN!!!!!! PTL!!!!!!!! Now, we realize we are far from being back to normal so this tube is still a possibility in the future, but hopefully we are on the right path to completely avoiding the tube. We still have to get more liquids into her as she isn't taking enough, but it is much better. I would say we've been averaging around 20oz a day of formula with 4oz of water...that's better than the 10oz of formula we would sometimes get. Now remember, her formula is a junior formula that kids can take up to age 10. It's the only kind of "milk" she can drink.
So the plan is to continue the diet with no gluten (wheat, oats, barley, rye), no dairy, no rice, no soy, no beef, no nuts, and no shellfish. Whew...it really doesn't leave any food. Seriously. Pretty much everything that is gluten free contains rice as it's back-up for the gluten. She has steamed chicken with olive oil...fresh organic fruits & veggies...organic ham...organic beans...and that's about it. I also found a liquid vitamin supplement she can take...most have brown rice in them. We were at TGIFriday's the other day, and the guy up front asked if we wanted a kids menu. We said no she's allergic to everything. I then proceeded to tell him if you could find something that is...(all the list above) free...then I'd consider it for her. He didn't say anything else! haha
We will continue the 30mg of Prevacid a day plus the Benecol which helps tighten the muscle in the esophagus/stomach so food doesn't come back up. I was also told that these stool tests CAN have urine in them so it should be MUCH easier to get that sample now. Oh, by the way, her HLA blood typing test came back...one gene + for Celiac...and one gene - for Celiac...which leaves us no where for now. They want both Barry & I to get tested.
It's funny how you try to do everything right, but you soon realize that you can't control a lot of things. I mean, every food I would introduce she would have for a full week with nothing else being introduced...they recommend every 2-3 days...so I was overly-cautious. Then I don't let her have junk like juice...which sorry, has NO nutritional value...so my Mom & I got her to drink plain water! Finally, I feed her everything organic & fresh...at least as much as possible...nothing processed...nothing canned which is loaded with sodium...and see where it got me? haha I know, it has nothing to do with all that (obviously), but it is frustrating!
Makayla, you have no idea how many people are praying for you right now! You also have no idea how much Mommy & Daddy appreciate & feel the prayers, love, & support from our family & friends! Never take for granted the circle of people that God places around you in your life. THANK YOU THANK YOU THANK YOU!!!!!!! I'm sure there will be many more updates to come....
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