Results are in.....SORT OF.

Okay, we are beyond frustrated at this point. I got a call from Emerson's GI doctor today with the results of her capsule endoscopy. Every thing looks normal EXCEPT that the mucosa lining of the small bowel is swollen and fragile (it started to bleed as soon as he inserted the camera). That doesn't even make sense. "Everything looked normal expect". Can anyone explain that phrase to me. Anyway, he said that this swelling was non-specific which is doctor code for "we still don't know what the hell we are dealing with here." So, what's the next step? You are not going to believe this, because I sure didn't. He suggests that this could all be from a milk protein allergy and to put her on a milk/dairy-free diet for a month to see if her hemoglobin and hematocrit levels rise. Are you kidding me? Shouldn't this have been the first step in the diagnosis process? It is the non-invasive approach! If it turns out that the final diagnosis is a milk protein allergy after 18 months of GI issues, I might have to turn all Erin Brockovich and find a way to get all our money back for these outrageously expensive tests. Not to mention all the trauma Emerson has gone through with doctor visits, hospital visits, anesthesia, bowel preps, blood draws, etc. Why has this never been mentioned before. I mean, Reagan had a milk protein allergy as an infant and outgrew it shortly after her first birthday. They had the same GI doctor so he knew the genetic history. Just further proof that these doctors have their heads so far up their asses they can't put two and two together. I'm thinking I can claim fraud and emotional distress. Sounds reasonable, right?

Part of me wants this to be the answer because that means an end to all the testing and no surgery. An easy fix, right? Well, eventually an easy fix. It will definitely be hard to put Emerson on a milk free diet. Just in my post I wrote of how much she LOVES ice cream and chocolate. She has made leaps and bounds toward branching out her diet. The variety of foods she will now eat is so much greater now. Just today I was watching her eat and thought about how proud I was of her. I am no longer worried that she is not getting a balanced diet. Last night she ate a hamburger (with requested lettuce and tomato) and today she ate a teryaki chicken and rice dish with red pepper and carrots over pizza. Now, I am going to have to tell her "no" to some of the foods she has grown to like. I am really going to have to get creative. At least for this month she can't have anything that contains milk. This includes cheese, yogurt, ice cream, butter, chocolate. The real question is "what CAN she eat?" To give you an idea of how drastically her diet will have to change, this is what she ate today that included milk products: cheerios with milk for breakfast; a Yoplait yogurt smoothie drink and a piece of bread with Nutella spread for lunch; a brownie for an afternoon snack; a go-gurt yogurt for a snack before bed. Plus, she asked several times to go get ice cream as well.

The other hard part of this diet is how to make sure Reagan and Pierce are getting their adequate dairy intake on a daily basis. Reagan doesn't drink milk and also loves cheese, yogurt, and ice cream. Do I deny her these things as well. Do I not even have these products in the refrigerator to offer anyone? I'm really going to miss the fun trips to the yogurt shop that Emerson loves so much. However, Jamie may be the hardest to retrain. He loves having chocolate, chocolate chip cookies and ice cream in the house. He is now going to have to sneak his goodies at work. So much to think about. I don't think I am going to get much sleep tonight.

Of course my first question for the doctor was, "what if this doesn't help with the bleeding?" Well, that means more diagnostic testing. At least we know for sure we have a month long break from anything invasive. I have an appointment with the nutritionist at Children's on May 5th to go over this diet plan. I'm not too sure of the reason. How complicated can it be? I will definitely be coming with my list of questions in hand so I have a better idea of why we are just now theorizing that a milk protein allergy is the possible cause. I mean, he was pretty confident that she had a Meckle's diverticulum and that didn't not pan out. So, as I go to bed tonight, I will praying for peace. I am a little wound up and am starting to become angry. However, anger is not going to change anything and is pointless. It will only add to the stress. I am going to allow one night to be angry and then move on. Well, I promise to try.