A new milestone in the journey...

We had Jacoby's GEDP evaluation yesterday at National Jewish, which included appointments with the nutritionist, behavioral specialist, gastroenterologist, and allergist. Despite being a very long day for our little troopers, I think we left feeling encouraged and inspired by this team of doctors and specialists and the care we'll be receiving under their supervision. So, here's a quick recap of what went on yesterday:

1. Nutrition is actually ok. -- Despite Jacoby's very restricted diet, we were encouraged (and relieved) that he is actually getting the number of calories he needs each day. He's also doing well in the amount of protein and calcium in his diet. This wasn't at all an indication that we can sit back and relax, but our hard work to ensure that he gets a variety of nutrients in his limited diet is paying off. We received a lot of information and resources. And, thanks to some clarification, 3 ingredients we had been avoiding are actually not harmful to Jacoby! So, we are so excited about this teeny tiny window being opened up to us. I never knew how excited I would be to be able to use cooking spray again!

2. Under the Microscope with the Barber Family (aka, meeting with the psychologist). -- Yes, it's true, the Barber children did not hold back and provided the psychologist with plenty to observe and comment on. The boys actually behaved famously considering our appointments went right through nap time, but she did get to see how we negotiate behavior when a certain Jacoby and a certain Morgan really want the same resource. (: We came away from this appointment with a better sense of the developmental tasks Jacoby is working through, how these can be affected with chronic illness (i.e., it's harder to learn and behave when you're not feeling well...but you still have to follow the rules), some things we may need to work on at preschool, and some ways Justin and I can help Jacoby express himself (both emotionally and physically...i.e., helping him learn to describe nausea, pain, etc.).

3. The kindest physician we've ever met. -- We've met with a lot of specialists and physicians over the course of this journey, but our gastroenterologist is one of the most kind and compassionate people we've met to date. He came right in and was instantly engaged with Jacoby (a child who is not usually instantly engaged with anyone), talked to him about what he was doing, and how his day was going. He made a super-good impression on Jacoby's parents. His role was mainly to inform us about Jacoby's illness and what their goals are for their EoE kids. They work really hard to ensure quality of life for their patients, to make sure they are receiving adequate nutrition for growth and development, and to do all they can to help the affected tissue heal. We've been reading up on his research, so we were prepared and ready for what he had to tell us: the disease is chronic--Jacoby won't grow out of this. Jacoby was very cooperative during his exam, a seasoned expert at this point. This physician was particularly interested in Justin and what he has been through with his own esophageal issues. We suspect Justin will be getting quite a bit of attention throughout this whole process as well.

4. All Eyes on the Allergist. -- It was clear by the end of the day that the guy who probably will have the most influence on how this all plays out is our new allergist. And he was wonderfully engaged and funny with all of us. He went through a very detailed timeline with me starting with our first indications of trouble up to where we are today. Justin and I created several documents (one that was a medical timeline, and one that summarized all of the test results) to serve as cheat sheets for ourselves during these appointments, and the allergist took them for his own use at the end of the appointment. (: We were fully expecting to have to slash down Jacoby's diet even further, but the allergist was actually very reluctant to take this approach...again, back to the quality of life issue. So, he was going to take all of Jacoby's test results (and our notes) and map everything out. In the meantime, they may start Jacoby on a steroid to begin taming the inflammation in his esophagus, as long as we get the green light from our endocrinologist. And then Jacoby will go in for another round of allergy testing on all of the food he currently eats. This will be a fresh food test, which often yields more accurate results, instead of the commercial tests he's had in the past. We still have some investigative work to do because despite Jacoby's restricted diet, something is still causing inflammation. The allergist noted that Jacoby has had way too many allergy tests, but we all felt this was warranted to help us figure out what is still causing him trouble.

5. A Plan from the Team. -- So, now we just wait for the team to meet next week to discuss Jacoby's case and come back to us with a plan of action. It will probably involve some manipulation of his diet and medication. We are thrilled that Jacoby is receiving this level of care. What was also quite a site to behold yesterday, was the number of children and families in the waiting area who are on a similar journey like us. If there was ever anyone on the fence as to how affected children are by food allergies and other problems like EoE, it would only take a moment of sitting in the waiting area with these kids and then there would be little room for question.

6. Our Troopers. -- It was a very long day for all of us, but we felt like Morgan and Jacoby did a really good job through all of the appointments. The borrowed DVD player literally was a blessing sent from above. Whenever meltdowns were imminent, Elmo saved the day (as he does in many ways). Morgan surprised us by not napping AT ALL. It was, I'm sure, the first day he's ever skipped a nap in his entire little life. He was completely out as soon as we pulled out of the parking lot at 5:30 pm last night. Jacoby kept saying throughout the day yesterday, "Is Morgan here to help me?". And I would say, "Yes, Morgan is here to help you through all of these appointments and to make you feel better if you're sad." And I think that was mostly the case, except when the little brother decided to steal Jacoby's favorite dinosaurs or trucks...as is sometimes the role of little brothers. (:

We are so glad to have a 3-day weekend before us. I'm not sure what I'm more excited about: a movie and dessert-night with the tall boy or the fact that I'm stopping by the store this afternoon to pick up cooking spray. (: Thanks to all of you who sent thoughts and prayers our way yesterday--we needed each one of them!