Touch, scratch, poke, yuck.

Today was the long anticipated first appointment at the EE Clinic. Kaleb was diagnosed with Eosinophilic Esophagitis (EE) a little over a month ago. (You can read more on previous blogs.) Once a month, 3 specialists come together to treat kids who suffer from this disease. We first met with the allergist (who was different than the one he usually sees), then Dr. Aljabi (G.I. Specialist) and then a dietitian.

Dr McLaughlin (allergist) told us a lot about EE and food allergies and then had a comprehensive skin allergy test done. There were 5 different panels of foods, and Kaleb was not happy at all. They forced him to lie on his stomach for a really long time, and to be honest, was not kid-friendly at all like Dr White's office is. He had reactions to 2 new things, turkey and coconut. Which now brings our list of foods to avoid to:

Milk, egg, wheat, barley, rye, oats, chicken, turkey and coconut.

We then saw Dr Aljabi and Dr McLaughlin together. Dr Aljabi was very impressed with the almost 4 pounds Kaleb has gained!! However, she was really concerned about his skin color, and Dr McLaughlin concurred. This forced us to have lab work for a full CBC.

Lastly, we met with the dietitian, who basically didn't offer any other solutions and told me I was doing a good job of feeding him. I was really looking for different ideas of things to feed him, but she couldn't offer me any. In fact, I taught her several things about where to shop, new products on the market, etc! 

In the end, my main lesson for today was to be my child's advocate. Dr Aljabi wants another endoscopy done in January, but I informed her about how Deaconess told me his last one would be covered at 100% but then I got bills for $1500. She agreed to schedule it for Dec 20 so that all the bills would be covered this year since we've met the deductible. (Have I mentioned I really like her?!?) Hopefully if all goes well on the next endoscopy, we can stop the pulmicort steroids. 

I also made it a point that if Kaleb has another endoscopy he WILL have the versed medicine to calm him before the IV, which didn't happen last time. I told them how we were told there "just wasn't time" and they assured us it wouldn't happen again. Trust me, it won't. Not with this mama! I've learned to stand up for my child and fight for him and what's necessary and what's not.

I was talking with a friend last night about how we had prayed and prayed for a child for 3 years before getting pregnant with Kaleb, and how much of a miracle he truly is. I can honestly say at only 1 year old, he is my daily inspiration. Special needs and all, he knows how to light up a room and steal a heart within minutes. His tight grip hugs may be the sweetest thing I've ever experienced with a child. While I didn't ask for this situation or foresee it at all, I'll deal with the food avoidance and cooking special meals for him 3 times a day for as long as I have to for my miracle baby. Most days I feel like I don't have it altogether and feel a lot of stress and anxiety, but then Kaleb crawls over, sits in my lap and lays his head against my chest, and it's all worth it. Funny how God created children with the ability to soften hearts like that :)