Saturday, November 11, 2017

Halloween/Fall 2017

It looks like the post from the beginning of 5th grade didn't get uploaded, so it's a 2 post kinda day today.

5th grade is continuing to treat Jack well. He does ocassionally call for some tylenol, and has had to come home early once or twice due to stomach cramping, but by and large, he's at school full time.

He started the school band, and does percussion. Playing on bells now and working his way up to drums. Once a week he also has karaoke club, and loves to sing with his friends.

Twice a week he has karate at the local YMCA and has earned his second belt there. His reward for that were real throwing ninja stars. (Shuriken.)

And hitting life full throttle, on most mornings he bundles up and rides his electric bike to school.

On Thursday, he did have a small procedure, a botox injection in one of the BM muscles, to calm it down and reduce the cramps. I think next time, in a few months we'll go with a permanent solution where they disconnect the muscle that is causing his cramps. But we'll see how long this injection lasts.
Oh, and he also got the G-button removed from his stomach. He says he feels much better without it.

For Halloween he rocked a spiked green hairstyle to school and wore his karate outfit for trick-or-treating.

In his free time he likes to disregard his homework, but does work with crafts, a 3D printing pen, and reads comic books or encyclopedias before bedtime.

He's also a movie connoisseur, we watched Dunkirk, Thor, and Murder on the Orient Express recently. He sure likes the new reclining chairs at the theatre. 

Still at 51lbs, I guess it's a small gain from the start of the year, but he is getting taller.

He's happy and active, and doing well, so we're all grateful for that :)

Rocket and Gonzo are still as close as ever, too :)

Fifth Grade Is Upon Us!

Ok, we are super excited for fifth grade, and 2nd week in, there have been no calls from nurse's office!
So that's a nice start. No tummy cramps or numerous trips to the bathroom.
Jack is riding his electric scooter to school and really likes that independence and a taste of freedom. 
We are also getting ready for a quick vacation to Quakecon, a videogaming convention in Texas. Yeah, we're still video games. 
Oh yeah, we also got a couple of kitties! Rocket and Gonzo are two brothers and they are inseparable. 
Jack adores them, and they love curling up next to him and napping. 

Sunday, June 4, 2017

Summer Break!

Allright, grade 4 is in the books!
Jack is in full summer mode, riding his scooter up and down the block and taking karate and swimming lessons at the YMCA. 
He is slowly gaining weight, he's finally over 50lbs. 
He's still a movie buff, we caught Alien Covenant recently and compared it to all of the other Alien (and Predator) movies. 
Summer should be fun, we have a cabin camping vacation planned, camp COHOLO (ran by Children's hospital) and a trip to Dallas for a videogame convention. 
We hope everyone has a fun and safe summer!
Today I'm grateful for:
- all of Jack's friends and cousins. They all have a blast playing together. 
- playing at the pool with him. We spent 3 hours together one night this week. 
- watching movies at the theatre with him. 
- his electric scooter, which he was too weak and affraid to ride for a couple of years. 
- awesome staff at Campbell Elementary that support him and look out for him at school.

Tuesday, February 21, 2017

We Come From A Land Down Under

Well, we're back from Australia!
Yep, Make-A-Wish flew all four of us to Australia, as that was Jack's wish. 
It was a week full of adventure, surfing, airplane flights, limo rides, meeting cool Make-A-Wish people on two continents, penguins, kangaroos, Dory fish, and even koalas!
Needless to say, we had a magical time exploring Sydney and nearby attractions. 

Back home, Jack is still loving karate at the Y, and is starting to swim again, and has learned to ride the bicycle. 

Here are a few pictures from our incredible Aussie adventure:

Incredibly grateful to Make-A-Wish for giving us this gift of worry free family time.

Tuesday, January 24, 2017

A bit over a year post treatment

This December was one year since Jack's treatment was finished. So far, so good!
He did end up with a bacterial overgrowth in his colon, probably a result of the illiostomy, but that is now being treated with antibiotics. 
Little dude is enjoying school and friends, and finding excuses for not doing homework :)

He is slowly gaining weight, so it's good to see that. And when I say slowly, I mean slowly... he's still pretty twiggy. 
But, he is taking karate lessons at the Y, and LOVES it. 

So... going good and wishing everyone a happy and healthy new year!

Saturday, June 4, 2016

Resting after Surgery

^^^ Mr. Froggy has been with Jack through every surgery, procedure and hospital stay. He and Jack are best buddies. 

Sorry for a little delay in the updates. Been a rough few days for the little dude. X-ray found a kink/blockage in the intestines. (Which explains the nausea and vomiting.) 
The blockage must of happened during the last surgery when a piece of omentum was pulled down and used as a cushion between the colon and bladder. 
Our doctor wanted to try draining the stomach in hopes of the bowel reversing itself, tricking it in a way. In order to do this, Jack has been getting all his nutrition through TPN. (IV Food) 
Doctor gave this three days, taking X-rays daily checking to see if there were any changes.
Negatives on fixing itself. :( 

Jack went in for another surgery this morning (laparoscopic- four little incisions) fixing the kinked intestine. Only a minimal amount of damage was done to the intestine wall and the surgeon feels it should repair itself.
Jack will continue the TPN for a day or two, allowing the intestine to heal. Then switching him over to real food, making sure he's able to eat, digest and poop everything without nausea or vomiting. 
I'm guessing we'll being staying in our Children's hotel suite until Tuesday or Wednesday. 

Tuesday, May 31, 2016

Quick Update

Discharged on Sunday afternoon and back Tuesday morning. Little dude super nauseous, dehydrated and not tolerating/keeping down anything. Took an X-Ray of his stomach and labs earlier today, will do another set of X-rays tomorrow morning. Draining out all nasty bile out of his stomach through his G-button and diet for today as been ice chips. Really don't know exactly what is going on, hopefully more answers tomorrow.