As most of you know, these past 10 months have been everything but easy when it comes to Ellie. I'm happy to report that we are 95% certain as to what is going on...finally. The reason we are only 95% certain is because Children's Mercy (sense the sarcasm?) didn't properly perform the tests (really- don't get me started).

It's a very safe assumption at this point to classify Ellie as one with Eosinophilic Disorders (specifically Eos. Gastritis, Gastroenteritis, and Colitis). In very, very basic terms, it's an allergy to a white blood cell that you create. These disorders are very rare and therefore often go misdiagnosed for things like Delayed Gastric Emptying, severe reflux, poor weight gain, bloating of the stomach, severe abdominal pain, blood in the stools, anemia, etc.- all of which Ellie has, and has had since birth. Though people think she's chubby (because of her cheeks), she's actually very small and has only gained a few ounces since January (which is just part of the disorder). Unfortunately, there is no cure for these disorders. You can go into "remission" but if and when the disorder flares up, it usually does so with a vengence. Aside from the EGID (the initials for Eosinophilic Disorders), they are thinking she has Celiac Disease (an allergy to gluten- a protein found in wheat, barley, and rye).

Treatment: The only thing we can do is keep her on a restricted, elemental diet until she is old enough to drink a specific product Neocate makes (they're like Vitamin Water for older kids but with all of the nutrition they need). We were told yesterday that she will continue on Neocate (a whopping $47 a can for a 2.5 day supply) until she is at least 18, most likely 24 months. Please pray that insurance will stop fighting our appeals and they will eventually cover this formula for her. We are confident that God will provide; He always has. After she is to the appropriate age, she will need to maintain a mostly Vegan diet with occasional food challenges.

Josh and I can't thank you all enough for standing by us these last few months, they have definitely been hard. I appreciate all the ears that have listened to my pleads for sanity when she was screaming non-stop, day and night. You all are our rock and we can't expess how thankful we are for each and every one of you.

Lots of love!

Josh, Britt, Emme and Ellie
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This is the email that I sent to most of our friends and family. We are so beyond thrilled to finally have a name for what is going on with Ellie. As I said above, it's unfortunate that we wasted all the time, money, and put Ellie through all that pain for the tests to not be properly performed but what can ya do? I'll explain more on that a little below. Though this diagnosis may seem grim, we're really not phased by it as we've already had to guard what she eats. Our biggest challenge: What the heck do we make her for a birthday party? If she can't have milk and soy, rice, wheat, oats, fruit with pits, blah blah blah, what does that leave to make a cake out of? Nothing. The poor thing! So I guess, at the end of the day, if all we have to stress about is what we're going to make for a birthday party, things are pretty good.

As far as the tests go: When I had the meeting with the Chief of GI before her procedures, I told him that we (Josh and I, our Ped, and our Ped Allergist) wanted to have her biopsied for EGID. (They would take a biospy and look at it under the microscope for clusters of eosinophils- the white blood cell.) He, of course, was very rude and said IF he did it, he would ONLY do the last 1/3 of her colon, because that is the most common place for them to be clustered. But it's very common knowledge that the whole entire GI tract (from the esophagus to the rectum) should be biopsied. (Again, that just goes to show that whole GI department doesn't take any of us seriously.) Just because they aren't clustered in the last 1/3 of the colon doesn't mean they're not clustered in the stomach, esophagus, and small intestine. I have a friend whose daughter has EGID and was only diagnosed when the whole GI tract was biopsied, not just the last 1/3 of the colon. So there is mistake number one.

Mistake number 2: They didn't have her on a gluten/wheat diet a week prior to procedures. Of course Celiac didn't show up on the biopsies...she hadn't had any grains since November! So now (starting yesterday) for the next week, we have to give her things with wheat. It's been a disaster so far. We started with some bread yesterday at lunch, followed by some saltine's for an afternoon snack. She was in so much pain by dinnertime she couldn't sit still. She was just writhing all around and fussing non-stop. Ugh. Another week of this?! But it is necessary and hopefully it will be long enough to make her bi-monthly blood work stand out when she has her Celiac panel done.

I'm sure some people are wondering why we suspect (or basically know) EGID and Celiac when we don't know 100% for sure. Well, our Ped and our Ped Allergist have both had a single patient with EGID. They both said it presented itself in the same exact way it's showing with Ellie. If you look on their website, she has virtually every disease/disorder that it goes misdiagnosed as. As far as the Celiac, the fact that she gets so, so fussy after having a small amount of grain is a big sign right there. Again, she has every single symptom of Celiac. Yes, these are just professional assumptions, but I trust them nonetheless (aside from the fact they've had patients, she meets every qualification for the disorders). Plus, it's virtually impossible to get hives with everything like she does and not have these things.


Ellie weighed 17.3lbs and was 28.8" long. Tall and skinny!
Emme weighed 29lbs and was 38.8" long. Really tall and extra skinny!

Emme is having her friends birthday party tomorrow so I'll be sure to take lots of pictures!