Clean scans and labs, and having a great summer break.

It's been a busy few days, busy with a hospital visit, and also with playing. 

Jack had CT scans on Monday, and they were clean:) His urine samples were also normal. Double :)

He'll have same set of scans in 3 months. 

And also, he is cleared to start getting his immunization shots, except for measles, for which he has to wait until Dec. 2016. So hopefully all other kids in his classes for the next year and a half have their measles shots. 

Not sure if he's gained any weight, but he looks, acts and feels stronger. He can jump and run much better and has longer stamina. 

Otherwise, wow, we're enjoying summer to the fullest. We play soccer and tennis in the evenings (not really playing, but running around, passing the ball to one another), we ride the motorcycle, and last week we fired off some rockets. His school has open library in the mornings, so he's also gotten some books, which he reads in the mornings. 

Tonight on our motorcycle ride, we rode by a restaurant, and it smelled so good, he agreed to have dinner there. Usually dinner involves a lengthy negotiation, but tonight he was ready to go. Pic below. 

It's now our secret place, and we're not telling mom and Chase where it is. 

So, looking forward to 4th of July weekend, and just playing it cool till then. 

School's out. Mostly

Ok, the summer vacation has started, but we signed Jack up for a two week reading and math workshop at his school.

The only bad part is that it cuts into his morning sleep, but he does go to bed at night easier. 

Otherwise, we're going day to day with his eating, bowel movements and nightly feedings.

He doesn't eat the best, as he still has a lot of constipation. He tolerates the nightly feedings we'll enough (the food formula doesn't upset his stomach), but if he sleeps on his G-button, it becomes sore, and if he gets the feedings when he is constipated, his stomach cramps up and keeps him up all night. 

So, we judge whether to give him his feedings by how backed up he is. 

We are spending as much time outside as the weather permits, going for walks, playing soccer at his school, and playing with Nerf guns. 

We did go and see Mad Max in the theatre, which he throughly enjoyed. 

So, day to day... minding his intake and output, and playing in between.  

Recovery And Feeding Tube

Jack is recovering well from Monday's feeding tube surgery. His stomach was a bit sore, but is better now. He went to school for a few hours on Friday, and will go back tomorrow morning. 

We took a nice walk at Toys R'Us and PetSmart. We like to look at Lego sets and Predator figures, and then see what kittens are available for adoption. We were both impressed with a tarantula and a scorpion they had at PetSmart. 

When we came back home, we had some grapes, and then he rode his bike up the sidewalk a few times. (He sat on a bike at Toys R'Us and decided he would ride his when we got back.)

Nightly feelings are going well overall. He gets about 500-550 calories without problems. (As opposed to the nose tube from a few months ago, which kept plugging up, and coming out of his nose. Not to mention all the anxiety over re-inserting it, and throwing up.)

He does wake up a few times a night (screaming) if he sleeps on the new one, or if it gets sweaty, but he goes right back to sleep, so it's not a big deal. 

Today, I'm grateful for:

- the tube supplying much needed calories. Hoping to see some weight gain in a week or so. 

- Jack feeling strong enough to go for a walk and ride his bike. 

- a break from the rain, allowing us to go out and get moving. 

Surgery #10

Jack had a G tube (gastrostomy tube) put in today at Children's. It's like button tubbing inserted through the abdomen that delivers nutrition directly to the stomach. Jack will get supplemental feedings at night to help him gain some weight. Little dude is still at 40lbs. The surgeon also did a rigid sigmoidoscopy making sure there isn't a blockage around the colon, as this is what all the X-rays and CT scans were showing. Well, there is a blockage, lots of scar tissue from both the removal of the tumor and radiation treatment which has blocked a good portion of the colon. So today the surgeon dilated the colon to 1.5 cm. He has another surgery scheduled June 4 to do another dilation, hoping to slowly get the colon back to its normal size. If the colon has shrunk back and didn't stay dilated, the surgeon talked about more of a in-depth surgery. (It's a pretty complicated surgery and fingers crossed we don't have to go down that road.) (There are other options too, from possibly just using laxatives to keep his stools soft, to maybe placing a stent. We'll see if dilations "stick".) 

Jack is doing okay this evening, the local numbing cream has worn off and his stomach is pretty tender. He has some pretty good pain meds that are keeping the pain down. They are planning on starting a feeding tonight at 10pm, so hope that goes okay through the night and his stomach doesn't get upset. It's been a long day, a 1.5 hour surgery turned into 2.5 hours and mom and Jack are both tired. The plan is to go home Tuesday morning. No school for a few days, just going to lay low and heal. 

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.