Everything went well in Cincinnati this past week! We will get the results of her biopsies and 24 hour study this next week. Visually everything looked good.....so hopefully we get more good news this next week!
It's kind of a hard position to be in....you don't want there to be something wrong with your child or for them to have a disease.....but yet it is still taking us an hour to do her tube feedings! She is still only taking 4 ounces at a time....so sometimes I think how can't there be something wrong!
We have tried several times to increase the volume, calorie content, or decrease the amount of time and each attempt is not worth all the vomiting. Overall she is doing better, so we have to focus on the positive. She is still sucking milk up a straw and eating table foods.
The GI doctor at Cincinnati mentioned her low muscle tone and how that can affect the inside development as well. Although on the outside she looks great...she even looks a little chubby! That her insides are not developed as well. Without a feeding tube she probably would not even be living at this point. A couple sips of drink and some table food here and there is not enough for her to grown and function.
I will definitely post when we get the results this next week! Thanks to everyone for all their thoughts and prayers!
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