Happy Birthday Jack!

Well, tomorrow, the little guy turns 9, and he is very excited. 

He will open a few presents before school, and then we'll have cake and festivities after school. 

Otherwise, he's doing well, still not gaining much weight, but he doesn't seem to mind. 

His legs are getting stronger, and he can walk fair distance. 

My goal is to have him trick or treating this year. 

We had a great weekend, playing with cousins and even swimming a bit in a pool for his cousin's birthday party. 

No other news, he will have check up scans in the near future, but I don't think they're this week. 

Back to School!

Ok, Jack started the third grade, and had a stellar first week. 

He is able to stay the whole day, and loves it. (We know because he doesn't cry when we drop him off and is happy when we pick him up.)

Since the last blog update, Jack went to a camp put up by the Children's Hospital, and had an amazing time. I think the camp taught him that it's ok to be independent, and it's fine to be away from us. 

Then, we went on a camping vacation in Colorado's beautiful Rocky Mountain National Park. 

There, we let Jack help with firewood, he got some ninja throwing stars, and even drive/steer a boat. 

(Or skipper it, as it's sometimes called.)

He did need to sneak a couple of procedures in between (colon dilations), but those are outpatient procedures, and he handles them like a champ. 

Onwards and upwards for now, he still weighs about the same, but looks and moves good, his bowel movements are OK, and he eats OK. 

Here are some pics:

At Camp!

So, camp COHOLO, (COurage, HOpe, LOve) organized by Children's Hospital, is finally here!

https://www.facebook.com/CampCoHoLo

We've been waiting and talking about it for over a year now. Jack was supposed to go last year, but a treatment or something else got in the way. 

So, we dropped him off today, (the camp is midway between Lincoln and Omaha, 30 mins. away) without any tears. He'd been talking about it all week and was genuinely excited, but we weren't sure how the drop off would go. 

Luckily, with all the other boys in his cabin, and very friendly adult leaders, he was comfortable, and ready to do his own thing. He's been talking about pranking the staff and nurse Anissa, and eating s'mores, so hoping he'll get to do that. 

We will pick him back up on Wednesday, and I can't wait to hear all about it. 

There is a circus from New York there, and they will teach kids juggling and other circus things, and we will have a special surprise show when we pick him up, with kids performing their new skills. 

Otherwise, Jack is weighing in at 42lbs, so that's an improvement. I'm hoping the camp activities get him out and about, as we have been weathering the heat indoors.

Extremely grateful that Jack is spending time with his own peers and hopefully getting a bit out of his comfort zone in such a supported and loving environment. 

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.