Monday, March 18, 2013

My two favorite princesses!

Wow, has it really been a week since I posted? I'm finding it harder and harder to keep up with Jax facebook page and the blog. Facebook is so much easier! I'm not shutting down the blog, it will just have fewer posts than we used to! If you want to follow his facebook page you can follow it here.

A lot of little stuff going on in the Jax world right now. The infection in his trach is persisting in one little spot, even after IV antibiotics. I just sent a picture of it to his ENT, and then she'll decide where to go from here with it.
Also Jax is not pooping! I'm getting a ton of air out of his G tube, and a big, distended belly. Now not pooping is common in kids with DS. I have this problem with Arina. But Jax is not a typical child with DS! He never gets backed up! We've known since he was an infant that he doesn't poop on his own. He was checked for multiple bowel diseases, and it was determined it's probably from his brain injury. I've been giving him a liquid suppository every night before bed for over 5 years, and it works like a charm. But now we've gone 7 days with only a dime size stool after last nights suppository. He's not going even with his suppository! That's what has me concerned. I called his peds office today and told her I want an x ray. Just waiting for that return call! If they wait until 5 when everything closes I'm going to lose my mind!

Last thing is I'm impatiently waiting for his surgeon to schedule the J tube surgery. He wants to do one more test at the same time as the surgery, to check for structural problems with the esophagus and stomach. But his GJ tube is on its last leg, and I don't want to pay the money to have it changed in radiology just to have the surgery a week or so later! But if we wait until this tube totally fails, then we are looking at an admission until they can fit us in to replace it. I love how there is no sense of urgency in the medical field. Unless of course its something for them!

In between all of Jax drama we fit in tons of baseball (Ray is a coach and a board member, so he's busy busy!) and of course Disney! I'm super excited because in just two weeks is our annual Disney vacation. Seems dumb to do a Disney vacation when we live a mere half hour away and go a lot anyway. But its always been our vacation spot, and now its much cheaper for us. Plus staying in a hotel is half the fun! We are going to do some Disney stuff we've never done before. Get a private tour of the park, preferred seating for World of Color, and of course our favorite character breakfast. But since our princess is getting so fun, this time we are going to do the princess breakfast! Yay!
Yesterday we got some super cute pictures of Arina and Cinderella! I think these should be used for promo's, don't ya think???

Oh, and in case you didn't notice, we chopped Arina's hair! We didn't have quite enough to donate, so we were a bit bummed about that. But I LOVE it! It was hard to see her long hair go, but this crazy toddler phase requires a shorter do! It was a sticky mess every morning. And I think she looks more sassy this way!


Melanie L said...

I like her new haircut a lot - very spiffy! Great pictures.

Lane said...

Arina looks adorable with her new haircut! So grown up!!

The VW's said...

Love her new haircut!!! Such precious pics!!

Shelly Turpin said...

I really like her hair!!