{Bad words bad words bad words} seems to be commonplace in my mind lately.
Here is a glimpse of the latest happenings....
Tyler needs to consume 1,000 calories a day. With his current formula concentration he should drink approximately 40 ounces a day. On a good day he drinks 25. Mister C wakes Tyler up during the night to dream feed another 120+ calories (5 ounces) into him. Sometimes he is successful, other times he is not. We compensated for the lack of calories by adding a little bit of oil to his green beans and soy diet. He hates soy. I spent time squeezing edamame out of the pods so they were ready to eat just in case he changed his mind. He hasn't. I cooked up some tofu stir fry drizzled with gluten free soy sauce. He hates tofu.
Now he hates green beans. Judging solely by his behavior, it appears green beans may actually be a trigger food.
So we go back to square one and he is only consuming vanilla Elecare. (Insurance is being a nightmare. That in and of itself can be a post.)
Life is grand. :)
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We had a weight check with Doctor Laks yesterday. Tyler has lost weight since we saw her at the beginning of April. The current diet should have eliminated his eosinophilic triggers and his appetite should have increased. He should have put on a little weight but he is Tyler.
The GI wants to wait 2 weeks before we place an NG tube. His thinks giving Tyler a full month of "clean" foods will be beneficial, Laks thinks it'd be beneficial for Tyler to gain weight ASAP. She is not as happy with his lack of appetite as we have become. (Have I mentioned I love her?)
So we wait 2 weeks. Fingers crossed he gains weight or there will be two unhappy women (and a father) making some phone calls.
Love you bunches! I think there may be more than 2 angry women calling places, if I may say so myself!
ReplyDeleteThis is where I totally trust mommy instinct. If he wants to eat chocolate bon bons, then have at it kiddo! LIfe is good. The good thing is knowing that even things are off kilter now, that they will most likely right themselves. And the sooner the better! Sending chubby thoughts of Tyler your way!
ReplyDeleteHi, I found your blog by searching google for EE and Dr Shimamoto! Interesting. Just thought I'd say hi. Our little guy is 3. He was diagnosed with EE right after he turned one. He was in dire straights then. We have had an uneventful past 18 months, doing great just avoiding egg, wheat, dairy, soy, nuts and fish, but now he is going downhill so this is a huge change.
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