Negative.

So, for today's medical adventure we packaged up 23 snack bags neatly labeled with Jacoby's information and headed to National Jewish for what I think was our 4th allergy test (it could be the 5th, but I've honestly lost track). The items in question today were: corn, wheat, beef, gluten-free flour, tapioca, broccoli, strawberry, blueberry, banana, pear, apple, strawberry vinaigrette, ketchup, spaghetti sauce, mushroom, carrot (cooked and raw), lettuce, grape, potato, ham, and rice. These are the basics of Jacoby's diet broken down into 23 snack bags!

Off we traipsed to Denver, dropped off our food 1 hour prior to the test, had a snack in the car, went back for the test, super-fast and friendly nurse did the test, we watched Elmo while we waited for the timer to beep, nurse came back in to read the results, and...they were all NEGATIVE! I can't even begin to describe happiness that comes from a negative result in our world! We're of course always open to diet changes when recommended by our doctors, but it's a relief to know that most of what we're feeding our child seems to be ok as far as we can tell with a skin prick test. So, all of the thoughts I was milling over on our commute to Denver while Jacoby snoozed, like "Can we live without spaghetti sauce? It might be tricky but I think we'd live." And "What if all of the fruit comes back positive? Well, I guess rhubarb, cranberries, and prickly pear might be options to try next." And "Can I really learn how to make gluten-free bread without my nifty flour? Better start praying for patience on this one immediately..." have all faded into the background for right now.

For next steps, I hope to talk to the allergist sometime today about our course of action (which may involve diet changes) and getting Jacoby started on a steroid to treat the esophagus inflammation. And we're going to continue on with our 23 food items for right now, and enjoy each and every one of them immensely!

I should also mention for those following Justin's progress, that he had a great impromptu meeting with his advisor today at DU (the reason I'm at home and not working this afternoon). It sounds like they've come up with a plan to go over bibliographies for the next two comprehensive exams in a week or so, and he understands Justin's goal of getting these over and done with (and out of our lives forever and ever) by spring quarter.

So, many things to be thankful for in our lives today (more on that over on my other blog). Here are silly pictures of Jacoby's "snack-bag diet". Hope you're having a great week!

An update

Life is good at the Barber house these days. I can hardly believe it's the end of January already! We've been busy with work, studying, playing, and school.

The boys are doing great and are staying healthy so far this winter (except for a random tummy bug one night last weekend for Morgan), so we're really thankful for that. Morgan's classroom is in the midst of a farm theme right now, which Morgan seems to really enjoy because there's much ado about tractors and animals. His classroom also adopted a new mascot whose name is Captain Kangaroo (a very big title for a little tiny hamster). Captain Kangaroo stays in his cage, but Morgan is fascinated by him and tells everyone "No fingers!" He's also become classroom reporter and stands at the window and narrates everything he sees.

Jacoby is doing so well in his class. We've been really proud of him, and are thankful for a couple of little girls that he's befriended that seem to help with some of the behavioral things we've been wrestling with. His love of dinosaurs continues, and he announces his presence in the class when we arrive with a big R-O-A-R! Fortunately, his teachers think this is pretty cool. He keeps Morgan entertained for long stretches of time. They're always on some sort of adventure or last night I found them having a dance party in our bedroom thanks to Morgan figuring out how to turn on the alarm clock radio. We play dinosaurs whenever we're outside (heaven only knows what the neighbors think), so sometimes we're plant-eaters eating the trees with our long necks and sometimes we're meat-eaters chasing small dinos (we've had to redirect Jacoby from always choosing Morgan for prey). (:

Justin is studying for his next exam and is hoping to get a much-needed appointment scheduled with his advisor this week. Work is semi-busy for me until February 1 when the wheels start turning for our spring board meeting. Jacoby has an allergy test on Tuesday this week, so we'll be busy tomorrow evening preparing 23 food items to take with us. It will be interesting to see what the results show and what changes will need to be made.

We hope you all have a wonderful week!

This is a dinosaur nest, and the boys are very busy checking it out and seeing what dinosaurs have hatched.

Sweet little boy

I'm not exactly sure what they were doing over at the fence...

But when I asked, they turned and ran, giggling the entire way!

I'm guessing they're being chased by dinosaurs...but that's just a guess.

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!

A Snowy Day...

We woke up to snow and cold this morning and slid to and from church. Once home, the boys (and I include the big one here too) gobbled up nearly a whole coffee cake and then settled in to watching the Polar Express. Morgan joined the toddler Sunday class today and seemed to have a good time. I only stayed a few minutes and then he said it was ok for me to go to church. (: It's amazing the difference between our kids' personalities with situations like this. Jacoby checked out his class and then decided he wanted to sit with Mommy and Daddy again. He does great during the service and loves the music.

Our week was uneventful aside from transitioning back to preschool and work. The boys seemed excited to get back to school and their activities. Miss Amy taught music class on Friday, and that's all they talked about on the way home. They've really been into singing, playing the guitars, and making music together over the past couple of weeks.

We started using our new responsibility chart this week with Jacoby, although Morgan gets reward magnets whenever he does a good job with something too. Jacoby worked on sharing, saying please and thank you, and doing a good job brushing his teeth. Yesterday, we counted the magnets to see how he did and talked about which responsibility had the most magnets, which one had the least, etc. And then he got to pick an activity card for his reward on doing a good job during the week. He picked "Play with flashlights", so we spent the evening running around in the dark, playing hide and seek, and trying not to run into things or each other. He's got a new set of responsibilities for this week--thanks to Aunt Kenzie for our new chart so we can learn how to become responsible!

The big event coming up this week is Jacoby's evaluation at National Jewish for his EoE. We will be seeing the nutritionist, behavioral specialist, GI doctor, and the allergist--all between 11:30 am and 5 pm on Thursday. We do have a 2-hour break in the midst of it all, and it sounds like we'll be interviewed to be part of a quality of life research study during that time. I've been so impressed with everyone that I've spoken with by phone, and we're really looking forward to getting treatment started for Jacoby. I think it's going to be a difficult day on a multitude of levels, but I think we'll be ok and I've stockpiled a bunch of books and will be borrowing a portable dvd player from a friend to help pass the time for Jacoby and Morgan. We'd appreciate your thoughts and prayers on Thursday!

We hope you all are warm and toasty today--have a wonderful week!

Reading to Elmo

Playing the guitar

Playing guitars together...Jacoby really likes using the strap

Happy New Year!

Happy New Year everyone!

We're finishing up a great week of vacation. I'm definitely a fan of staycations now. (: The boys have been very busy playing with new treasures. They are almost always playing with each other now, unless they're at odds over a few prized possessions. I think the pretend play has really helped Morgan's language development, and there is no end to Jacoby's imagination! They've recently become interested in dinosaurs, which is rather refreshing to have a new interest not involving some sort of truck. There is, however, a huge learning curve with this new interest as I know virtually nothing about dinosaurs. I think dinos might be the theme of a certain almost-four-year-old's birthday that's just around the corner.

Justin and I have mainly been spending time with the boys while doing a few projects around the house. Justin is narrowing down the bibliography for his second exam that will probably take place some time mid to end of February.

We've also been talking about 2011 and what our hopes and goals are for the New Year. We didn't do too bad on what we set out to do in 2010 (see those here) considering all of the medical issues that popped up unexpectedly. Here's what we're hoping for in 2011:

Justin -- besides finishing two more exams, defending a dissertation proposal, and hopefully getting a good start on his dissertation this year, here are a few other things Justin's thinking about:

1. Watch no TV for the entire year (except inadvertently, when it cannot be avoided). He's got at least a four month head start on this one!
2. Limit news intake on the internet.
3. Read through the remainder of the New Testament in Greek.
4. Make meditation a more firmly established habit.
5. Read through the latest edition of Janeway's Immunobiology in order to gain a better understanding of the processes involved in Eosinophilic Esophagitis. (Thanks for the heads-up Uncle Jared!)

Jacoby -- Our major hope for Jacoby is to get started with treatment for his EoE so he starts to feel better. If all goes well with that (and we are so hopeful that it will), we will work on reading and writing, have fun skiing this winter, celebrate birthday #4!, maybe learn how to ride a bike, maybe do soccer again, and maybe start swimming lessons.

Morgan -- Celebrate birthday #2!, transition to a toddler bed, maybe do a soccer class, maybe learn how to ride the trike by himself, and just have fun being 2!

Erin -- I decided to start a writing/reflection project over on this blog: http://givethankseveryday.wordpress.com/
Besides that and the normal eat healthy-cook healthy-exercise-balance work and home life goals I normally have, here are a few others:

1. I guess I'm going TV-free this year as well, since that's what my partner in crime is doing. (:
2. Start looking into kindergarten options for Jacoby--this is not a straightforward process down here, so I'll be checking out our public, private, and homeschooling (yes, homeschooling--all of you can take a collective gasp here to get that over with) options.
Given Jacoby's extensive medical needs, homeschooling is on the table as a real option for us if we don't find something that we're comfortable with.

Other things we're looking forward to this year:

**Birthday season will soon be upon us! I can hardly believe we're going to have a 4-year old in the house!
**U2 concert--unless Bono falls off the stage somewhere and they cancel on us again, we're excited to go to this concert in May.
**A trip to Hawaii--Our fall board meeting is in Hawaii this year, so Justin and I are trying to decide if anniversary #10 warrants a mini-vacation while I'm over there.
**A trip or two to Montana and visits with family. Always one of our favorites and we love to have visitors!

We hope your 2011 is happy, healthy, and wonderful!

Chef Jacoby

Morgan told Jacoby to sit down on the trampoline, and then he proceeded to sit on Jacoby's lap. (:

Playing in their "train"

Enjoying the snow

Riding in the sled and eating snow

Brothers in the sled