Sunday, March 22, 2015

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.

Thursday, March 12, 2015

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:

Thursday, March 5, 2015

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.)