Little update--be warned it's been a long day and I'm in a pissy mood!

Sorry that all I seem to blog about lately is Aubrey and all her medical crap! Unfortunately right now that seems to be what is the most time consuming thing in our home. I'm so lucky that the big girls have been so patient with the chaos all the appointments and such has brought to our house.

We had a follow up appointment with the GI doctor today. It's wasn't the greatest appointment. No weight gain and actually a small loss. She has been increasingly fussy with her feeds over the past two days. She still screws around with the bottle too much...she had been doing so much better. I know that it is possible for her to eat in a manageable amount of time because she had been doing it, but we are back to very lengthy feeds. I'm frustrated and just worn down. I hate that I can't fix my baby and that she's still not "normal". I'm thankful that other than her eating problems she seems to be a happy normal baby...her cognitive function is normal, fine motors are normal, and her gross motors are just mildly delayed. The hardest part is being challenged about what we are doing to remedy this problem. I can say with 100% certainty that I trust what the doctors and therapist are saying and doing to find us an answer. If I didn't believe it I would demand a change...I only want what is best for her. I've asked a million questions and always get the same answers...we are following the recommendations to a T. There are things that I'm not willing to do to put undo risk for further medical complications with my child. Nothing absolutely nothing will ever convince me that going against the advice of MANY pediatric professionals is the right thing to do. They are the professionals , they are the ones who deal with peds every day...they know what they are doing! When they tell me we need to do something different and can provide me with medical backing...yea I ask for reasons and backing for everything...then I'll make further changes. No I'm not getting rid of her thickener, no I'm not using rice cereal, no I'm not changing her to a Y/cross cut nipple, no I'm not starting solids...why, because there is more danger with those options than I'm willing to risk. I will not put my child at risk for aspiration pneumonia...yea they can fix it, but there are long term complications...the low wt. gain needs fixed, but scaring the lungs will not accomplish it. I'm done listening to these suggestions, until they come from a pediatric specialist. I've asked if these suggestions are a good idea from more than one specialist and have been told NO by each and every one. I've held my tongue to this point, but I'm done now. I do not want to hear it anymore. I am her mother and in the end her father and I make the decisions. I want her to be better, I want her to grow, I want her to be a normal baby...I won't put her in undue harm. I appreciate suggestions and will explore each and every one with the assistance of the doctors and therapists. I know doctors are not always right, but I have to trust that when the same information comes from multiple doctors there has to be some validation to it. Yea, it's been a long day and I'm in an awful pissy mood. Sorry...my update is more of a vent. I guess I needed to get it out before it comes out at the wrong time :)