Happy Apple Farm

Johnson's Crohnies

It’s been a little while since I’ve last updated everyone on the most recent tests we’ve had done on Jonathan. I’ve been saving up all our notes and talks with the doctors until the final test on the blood work came back. Both of the tests looked at Jonathan’s antibodies in his bloodstream (serology), the genetic makeup of his DNA, specifically whether or not he has the required DNA markers or mutations to be susceptible to an inflammatory bowel disease (IBD), inflammation, and the likelihood of developing a disease over time. The two types of IBD that he could have are colitis and Crohn’s. Crohn’s affects the small intestine. We are still scheduled this week for allergy testing in Denver, but due to these results the doctors think we are more likely dealing with issues related to IBD, not just an eosinophilic allergy issue.

The first test came back and showed that he has a required mutation in his DNA for Crohn’s Disease. Like some other immune system related diseases, you have to have certain DNA markers to even be susceptible. This doesn’t mean he has the disease, only that he is a candidate. The hope was that if he didn’t possess the required DNA markers for IBD, we could write it off as a possible issue for good. Unfortunately, he does. He also had five of the nine serology test come back abnormal.  The overall summary from this test is that he has patterns consistent with Crohn's.

The blood work was then sent for another test to determine the likelihood, based strictly on his serology and genetic results compared to a regression curve, of developing Crohn’s throughout his life. Based on Jonathan’s specific test results compared to the regression curve, he has a 36% chance by age five, a 43% chance by age 10, a 59% chance by age 20, and a 73% chance by age 30 of developing the disease.

The doctors would like to start treating him as if he has Crohn’s since it's more likely we're dealing with this than eosinophilic issues. Due to the side-effects of medication and that we don’t know much yet (and because he doesn’t actually have Crohn’s), we are going to wait a few weeks until we can get through the allergy testing. I always like to take these things one step at a time, otherwise it’s hard to tell what is really going on. Hypothetically, we could find some answers on the allergy side that will improve his eating habits. Diet is also key managing a disease like Crohn’s too, so we still may make some good progress on that front. After we work through the allergy appointments the plan is to meet with some IBD specialists in Denver.

Having something wrong in his small intestines, whether it be from “pre-Crohn’s” like symptoms and/or eosinophilic allergies would explain a lot. In the past it seems like he’s had bouts that are like flare ups, as well as an explanation for his vomiting, slow growth, and aversion to food. Looking at it from a positive angle, Jonathan really seems poised to make some significant progress over the next several months. We know he is capable of eating food when he wants to. As long as he’s feeling OK and is hungry (i.e. we haven’t fed him what he needs via his tube) he eats. These two things may remove what’s been causing him to not eat, accelerating the end of our g-tube days.

Action Shots

Julia picking out scarecrows for the front yard, Jonathan showing off his underpants as we try to potty train him, Jonathan posing for a picture at the Cheyenne Mountain Zoo.

Cheerleaders

The kids went to see Grandpa run a 5K on Sunday. Along the way they discovered that giving high-fives to the runners and cheering them on is great fun.  

Tree Huggers

Jonathan showing off his bandages after getting blood drawn. After the tears he requested "fresh, cold, water from Starbucks" to drown his sorrows. The nurses felt so bad he left with a stuffed monkey and a dozen stickers.

Kitty looking unimpressed during her Diamond Jubilee.

The kids perched in a tree that we had to climb to retrieve a geocache.

Soccer Buddy

6 a.m., Jonathan wakes up:

Jonathan: "I'm tired, my stomach hurts. Where are we going today?"
Mom: "Soccer Buddies."
Jonathan: "My stomach feels better!"

Cannon Beach Videos

Grab some sunscreen and a cold drink as you watch the kids playing in the ocean and on the beach for the very first time. Also, bookmark this page if you ever need to take a 5 minute escape from work.

Almost Famous

My friend and former coworker Josh writes a column on hiking 14ers in the outdoor section of the local paper. He's done them all, is on Search and Rescue, and has hiked with me on several occasions.  The last hike we did together was Castle Peak a year ago.  I use the word hike loosely on this mountain, as we were able to drive up an old mining road to 12,000 feet in my truck.  You can view my original posts with the photo he used in the paper here and the trip report here.

Cannon Beach

We met up with Jen and Cory and their two boys for some fun and sun at the beach on Saturday. We took the long way out there, north around Astoria and Seaside, but it was a nice drive and worth seeing once. The trip on the way back was much shorter - only 70 miles from our hotel.  There is a lot of diversity between those 70 miles...the ocean and the beach, mountains and forests, farmland, and then the city.

The weather was great even though it would occasionally fog over.  The water was cold, but after a few minutes your body would get used to it. This was the first time the kids had been to an ocean beach. Technically speaking, Julia had been to a beach in Mexico, but she was only a year old at the time. Jonathan spent a lot of time digging in the world's best sandbox. Julia and he liked to stand in the water and scream and point at every wave that was about to hit them. They also collected seashells and tried to build a sandcastle. Most of the day was spent running around the shallow parts doing whatever came to mind. It is a perfect beach for little kids. The waves are small and the slope is so gradual it is like a zero entry pool the length of a football field. Julia was a great big sister, and often made sure Jonathan had a hand to hold when the waves got bigger.

We ate lunch on the beach and drank a few beers before heading into town for the afternoon. Cory had attended a Bible college here years ago, so he knew how to sneak into the men's locker room for a free shower for the kids. We played at a park for a little while and then had pizza for dinner. The nice thing about this area of the country is that everyone has gluten free options.

After dinner we checked out Haystack Rock for a few minutes. I wanted to stay longer but could tell Jonathan was fading fast. Neither of the kids had napped, so it was time to head back to the hotel. Jonathan fell asleep 7 minutes into the ride home. Julia followed shortly thereafter. We had a great time.