Got Some Nunchuks And Good Lab Results

A few weeks back, a urine lab came back with some irregular numbers (certain hormone levels) that may have indicated presence of a tumor. (However there were other numbers that were within the norm too.)

These hormones can also be on the increase in times of stress or high level physical activity, so the doctor wanted a retest at a later date. So, we did that early last week, and the tests finally came today, and all numbers were in the normal range! So yeah, a big sigh of relief here. 

It does look like Jack will need a gastronomy tube (G-tube) "installed" to help him gain weight. Since he is barely gaining weight, doctors are concerned about stunned growth. 

Gastrointestinal doctor may talk to us some more about it tomorrow. He will also give us his opinion on whether there are any intestinal blockages that may be responsible for Jack's unusual bowel movements. They also took blood samples to test for celiac disease (gluten intolerance) and we should know those results tomorrow. 

At the beginning of the week Jack took a pill that had these 20 little plastic discs, and then he had X-rays through the week to see how the rings progress through his intestinal track. You can see the rings on the last X-ray. 

School is going well, although he is taking advantage of being able to come home after lunch. But with his sudden BMs, I don't blame him. Plus, he's not the only one with "spring fever."

We did go to his school carnival this weekend, and he had an exciting field trip too last week. 

His grades are good too, at least his spelling tests are, but he does need to read more. 

Jack saved, scrounged and otherwise came into possession of some money and bought himself a pair of Nunchuks and a dragon necklace. (BOGO weekend at the local sword shop.)

So he's been practicing with those over the past few days. 

So, we're waiting on:

- the opinion on intestinal track, 

- celiac disease test results and 

- G-tube consultation. 

(And of course Avengers on May 1st, and Mad Max on May 15th.) (And midnight showing of Star Wars on Dec 18th, but that's long term...)

Eating Good

Happy to report that jack is eating well. 

He's trying new foods (tonight he picked cabbage pizza over pepperoni, and last weekend he tried steak and loved it. Also orange popcorn chicken, and shrimp made it on his "likes" list.) 

So that's a big "whew" for us... Throwing in variety and vegetables into the fried chicken repertoire. 

We had a great weekend, we boys ran errands, played soccer and redecorated Chase's room. Jack is getting really mobile and active and is able to run and jump around. Not as much or as fast as usual, but he's getting stronger little by little. 

He even went for a walk by himself today! (Just down the block.) He did come back running/waddling straight for the bathroom. His BMs are still like that, they come on so suddenly, he just has a minute or two to make it to the bathroom. 

Otherwise, school is going great, he loves it, and is able to stay full days most of the time. (He came home early twice last week because he ate too much for lunch! Score!)

Here is a pic from tonight, he's trying raspberry pudding. He didn't like it though, only giving it a 4 out of 10. (I'll take care of the other 6 tonight, as that is one of my favorites.)

A quick trip to Omaha tomorrow, they'll run some urine analysis, and check in with gastrointestinal doc. We'll see if he gained a pound or so. He weighed himself at school and said he's at 41 lbs. He does look better, not so skinny, so we'll see...

Happy Sunday

Jack had a rock star weekend, enjoying the warm weather and playing outside with the neighbor kids.
Friday we had smoked brisket from Phat Jack's BBQ, add this to one of favorite foods. (He also loves shrimp now?!) I have no idea how to smoke brisket, it might be one of those take out foods.

Jack had four full days and one half day of school last week, which was pretty awesome! I think now that he's back at school, he enjoys going and looks forward to chatting with his friends. He's always sneaking something to show his friends, last week it was a Lego dude, a cool rock and a crazy bouncy ball. Hey, if that makes him happy and he has less meltdowns in the mornings, I'll let him stuff his pockets full!

This week should be pretty quiet, we do have a radiation followup appointment I need to schedule.
His eyes are slowly getting better, they aren't so sluggish and dilated all the time. I need to have his eyes rechecked and see if his lenses need to be changed out. GI doctor follow up visit in a few weeks. Also, while we are up at Children's, they will recheck his VMA & HVA Urine levels, as previous labs came back elevated. The doctor isn't overly concerned, but she wants to wait a few weeks to see if the levels come back down.

I'm thankful for:
- Jack wanting to go out and play with the neighbor kids, he can be kinda a hermit on his iPad at times. :)
- A nice visit and lunch at Tokyo's with the boy's Papa and Gramme.
- His appetite slowly, slowly increasing. Some days he surprises us and eats like a horse and other days not so much.

CT scans look good

We had our three month appointment today, and things are looking good. 

CT scans look good, urine and blood work are also fine. 

The little guy is still not gaining weight, he may have even dropped a pound, but is getting more mobile and is able to run, jump and climb stairs on his own. 

We knew today would be trying day for him, (he gets pretty worked up over the IV needle they need to stick in) so we ordered him a giant gummy bear as a prize/bribe to look forward to. 

A couple of pics of him eating it:

Long time, no see...

Wow, it's been a while since we wrote an update. 

I guess that's a sign that things are going well. 

Jack is still hovering around 40lbs, he has a hard time gaining weight. He eats OK, he has good days and bad days when it comes to eating and pooping. 

A few positive trends: 

- he is trying new foods.. Green peas (yea), shrimp (yea), squash (nay), orange popcorn chicken (a big yea), and finally flavored yogurt (yea).

- he poops without much pain, and sometimes without laxatives. It's been a while since he was on the toilet crying from pain, or needing a suppository. 

- he is getting more mobile. This is a slow but steady progress. Tonight he climbed two stairs in front of the house without any assistance. The last time he was on these stairs on his own was after one of the immunotherapy treatments last year when his legs gave out and he collapsed. So it made me super happy to see him climb them not once, but twice!

- he is going back to school, and staying the whole day probably 3 days/week. 

Gastrointestinal doctor does not see any blockages in his intestines, so we're not sure what exactly is causing bowel issues, but for right now we're focusing on getting him and his intestines stronger and regular. 

Otherwise, we're doing homework, playing Minecraft, reading books and apps about planets and molecules, watching movies (we even watched the Oscars) and waiting for Mad Max and Avengers to be released this summer. 

We have seen all the Aliens and Predator movies (9 all together) and were extatic to hear last week that one of our favorite directors will be directing another Alien movie. 

(He is a bit disappointed that none of his classmates know the difference between 6 or so different Predator types.)

He'll have scheduled check-up scans next week, and we'll post more as that gets underway. 

Grateful for many things:

- Nice weather coming up, phones will be unattended as we plan on playing lots of soccer. (Futbol as we call it.)

- Jack trying new foods, getting mobile and pooping without pain

- Chase being supportive and pushing Jack to try harder. (The other week they walked 20 minutes one way, 20 minutes in the store, and then 20 minutes back, to get supplies to make dart blowguns.) 

Weekend Update

Jack had a barium enema done Friday at Children's. A barium enema is when a contrast dye is injected into the rectum, making the colon, rectum and large intestines visible. The radiologist went over the pics with me, showing that Jack's rectum is about 50% blocked. Though not for sure why it's blocked, the radiologist is guessing it's a build up of scar tissue from when his tumor was removed.  It's good to finally know what has been causing all the stomach problems with the little dude. We are still waiting to hear back from our GI doctor, who I'm sure is working with our oncologist and surgeon discussing a plan for surgery. Hopefully getting this blockage cleared will get Jack back to being 100%. Going to the bathroom shouldn't be an issue and his appetite will pick up. 

His weight on Friday was 40.6 lbs., so no weight gain or loss. 

We enjoyed the nice weather over the weekend. Nothing too exciting to report. Jack loves watching the King of Random on YouTube, discovering new gadgets to build. He and Chase made some pretty cool blow guns out of PVC pipe on Sunday. It was great seeming them building and playing together instead of eyes glued to a screen. 

I'm grateful for:

- a evening of playing Monopoly. Mom won! 

- Everyday there is one more minute of light. Please spring, hurry along. 

A quick update

It's been a long time since our last update, but that's a sign that things are going well. 

Knock on wood, we've all been staying flu/crud/whooping cough free, and hoping to stay that way. 

Jack is slowly returning to school, but depending on his general feel, or oncoming bowel movement, or random foot pains, he only stays at school for the morning. 

His bowel movements are problematic, and he'll have an X-ray on Friday to see what's going on with his intestines that gives him so much trouble. He has a hard and painful time every time he has a movement, which can last for days at a time, so he doesn't eat the best when that is going on. 

He's still only 40lbs, so hopefully the X-rays will help the doctors diagnose what's going on. 

He's doing well otherwise, enjoying his friends at school and going for walks around the block when weather permits, or to toys r us, or on treadmill when it's cold. 

Here is a pic from around Christmas, I don't think we had posted it already.