The night of November 15th Julia accepted Jesus into her heart. Stacey and she prayed together in her bed before going to sleep that night. She had been asking Stacey a lot of questions, and so the time seemed right. Even a long time before this she would say things like she believed, probably regarding some of the things she heard in preschool and pre-kindergarten.
I was five years old too. Legend has it that I was at church. Obviously. the understanding of many things is limited, but I think Julia gets it. She's always had wisdom and smarts well beyond her age, and I never once was worried she wouldn't start out on this path. Those that know Julia probably understand what I mean.
A few days later at the store she found a short devotional book for little girls. She was so excited to buy it and read through it with Stacey. Stacey asked me if she could buy it via text...like I was going to say no.
The more difficult part will be to keep her progressing on this path as well as being a good example. I haven't quite figured out how to incorporate this into our daily lives or what kinds of things would be best for her to be doing and/or getting involved with. I guess I had better figure that out quickly.
On an unrelated note, I couldn't pass up showing the first "hand turkey" Julia brought home from school. I remember the good old days when a hand and five crayons equaled a masterpiece.
One item I forgot to mention in my previous post is how Jonathan tells us goodbye and goodnight. It's either goodbye or goodnight and then, "I really love you super berry much"!
I spent the last two weekends upgrading some of the fixtures in both the kids and our bathrooms. It's been on my list for a while to get rid of the bottom of the barrel lights, medicine cabinet, and faucets. However, that was only part of the project. The centerpiece was putting casing around the mirror.
There were several steps and extra mini projects that came about as a result of taking off the original lights and medicine cabinets. I had to do a small drywall repair job in both bathrooms since the builders had punched holes to run wire and then just covered it up with the old lights. The new medicine cabinets were slightly larger, so I had to pull out some of the framing made for the old units. Then I had to add some small trim around the medicine cabinets to finish off the edges. Jonathan's closet wall now has a hole to repair, but that was the worst of it.
We went silver in the bathrooms. Silver lights, faucets, and towel holder. Technically it's called brushed nickel. It looks like stainless steel. After finishing the medicine cabinets off with a small piece of trim I realized that we couldn't really grab the door to open it...so that's where the knob comes in. It looks good. You'll notice in both bathrooms that the lights are either slightly higher of not centered on the mirror. That's thanks to the builder's that put the electrical boxes wherever they felt like it. I'm not surprised though.
I only posted pictures from our bathroom. There is a before and after shot. I really like the lighting. It's very bright and white. It's almost a little too good, if you catch my drift. Of course, the lights and the frame around the mirror are what make the room feel completely different. It all ties with the rest of the projects I've done. Most importantly, it really makes the place feel more like a home.
Have to write down some of the things the kids say or else we'll never remember them...
Several weekends ago we went over to my parent's house for Sunday night dinner. Sometime after we arrived Julia asked Grandma what we were having to eat. After hearing the menu she disappointingly said, "well, I really hadn't planned on having THAT for dinner".
The other day I was playing with Jonathan and said, "Buddy, I'm really thankful for you". He replied as only he could, "you're welcome". Comedy is all about timing.
I was in another room and Julia came running. Excitedly she said, "Dad, I drew a picture for Great Grandma...and it's INCREDIBLE"! I think we're encouraging her a little too much.
When 150,000 miles you reach, look as good you will not. The Force is strong with this one. Hmmmmmm.
Daddy daughter, every other Tuesday before school, breakfast get together. We'll see how long we can keep this going. In case anybody wants to know, according to Julia, Mom's french toast is better than IHOP's.
Here's an email from Stacey that she sent to the family. Long story short, the Pill Cam showed nothing wrong. On one hand that's good news, on the other hand, Jonathan had the GI doctors stumped. This was the last major area to explore. Either there is something going on that can't be diagnosed or the issue is not a GI issue first and foremost:
As you all have heard, Jonathan doesn't have Crohn's but the IBD doctor said it is something we will still need to keep an eye on as he gets older because of the genetic markers that he carries (from the blood test we had done). The IBD doctor said that there were no significant signs of inflammation in Jonathan's GI tract from the pill cam test, so the doctors are perplexed as to why his fecal calprotectin tests (which measures inflammation in the GI tract) were so high both times he was tested while there are no major signs of it on the scopes. He's going to try & do more research on that and let us know if he finds any info.
Yesterday, I got a call from the GI nurse and they want to do a few more tests. Fortunately, they are only blood tests, so nothing too invasive.
1) They want to rule out SCID (short for Severe Combined Immunodeficiency) - you can Google it for more info
2) They want to rule out any carcinoid tumors - these can be cancerous and non-cancerous. These tumors can grow very small, so this is why they may not have shown up on any of the scopes we did (I asked about that). The blood test for this is called a tumor marker, so signs of any tumors would show up in blood work.
If both of these tests turn out normal, the next step would be to see the metabolic clinic in Denver. This can be a very long process to get into as the clinic is in high demand, so we have no idea at this point when that would be.
In the meantime, the GI doctor wants to start Jonathan on a zinc supplement which is supposed to help with gut health, then repeat the fecal calprotectin test in 2-4 months to see if there is any improvement.
That's it in a nutshell for now...
Wednesday we received a call from Children's Hospital that they could get us in the next day for the endoscopy to place a Pill Cam in Jonathan's upper small intestine. Although it was short notice, we were excited about being able to go through with the procedure that we hoped would give us some answers. Excited may not be the right word since we've put Jonathan through many things over the years. He's finally at the age where he knows what's coming and visibly reacts to it, making these visits less and less enjoyable.
Jonathan did great the day of the procedure even though he hadn't been given any food or water since three in the morning. Julia came with us on this visit. Everything went well until they took us back to the procedure rooms. Jonathan was his happy self until we turned the corner. When he saw the area he stopped dead in his tracks. From that point on he stayed near to us and was visibly nervous.
Since Jonathan is so young, putting him under anesthesia essentially amounts to pinning him down and holding the mask over his face until he inhales enough gas through his cries to fall asleep. We had done this same thing two months ago, so this time we decided that I would go with Jonathan by myself while Stacey and Julia left for the reception area. This time was a little better, but not a lot. We chose a berry scented chap stick for the inside of his mask and we took turns smelling it and putting it on our face. However, when it was his turn the second time even I could smell the gas when the anesthesiologist turned it on. After the gas came on we reverted back to the pinning method. This time he didn't cry as intensely, but it amounted to the same experience, I'm sure.
The procedure went well and we made it home safely. Every four to five seconds, as the pill naturally descended, the camera inside of it took a picture. It did this for 12 hours until about 2:30 in the morning. It relayed the pictures to the sensors on the body, which then saved the images to the disk in the backpack. The next day I had to drive it back up to the hospital for the doctor to review. The Pill Cam itself is disposable, but we're saving it for when Jonathan is older.
We had to wait about a week to hear back on the results, which I'll reveal in a separate post.
