Wednesday, July 1, 2015

Washington Island

We've been running around this state, and will continue to do so this weekend.
Let me start with Jax's Feeding Team and GI specialist update before we left on our trip. I was pleasantly surprised how happy the team was with Jax's weight gain and he surpassed his goal. Wow... that was so amazing to hear! The team was of course stunned when they saw his medical records from last winter, and even more impressed at the weight gain.
We had Jax on his feeding med with a different dosing the past two weeks and it definitely helped his appetite! It made him a little moody/feisty, like steroids do, but it did seem to help his appetite. He's on a 2-week break from them since bodies acclimate to it. It will be interesting to see how he does off it now.

We've also been treating his tube-site with silver nitrate and steroid cream to try and clear it up a bit. The GI specialist said that granulation tissue had grown over the prolapse, so we won't be able to get rid of the prolapse part, but we should be able to get rid of the granulation tissue - which all looks the SAME! So, we have kind of a gooey messy tube-site right now. The doc thinks his seizure and the retching/diarrhea from that night had pushed tissue through his tube-site - sorry, that's gross I know, but it is what it is.

AND, I can't really have Jax in natural water since it's an open wound directly to his tube-site - ugh, we have a beautiful weekend planned at the Garber cottage, so that will be an interesting wrangle. Although, he's officially done with his treatments as of yesterday, so I'm wondering if we just don't have him wade in the water vs going on boats/jet skis... we'll have to assess when we're there. Poor kiddo.

Last weekend we were in Washington Island with Jay's family for his cousin's wedding. We rented a house with his sister, her family and his parents. It was a nice getaway, even without nice weather for the first part. The kids LOVED the trip away and interestingly, never once asked for the TV (our house didn't have one) - kinda neat!

We have so much planned for the month of July. After our cottage-weekend, we'll be celebrating the boy's 7th birthday (seriously, how did THAT happen?) and then gearing up for our big end-of-the-month trip to Florida that we'll be surprising the boys with - yeah!


We took a family grocery shopping trip and the boys really crack me up. Brady also only sits in the cart for about 2 mins before 'helping me', so this was a rare photo op.

Waiting for the ferry at the tip of the WI peninsula.

On the ferry!

Clint and Jason doing their first (of few) Bitters' shots at the famous Bitters Pub (Nelsons Hall).

Ice Cream Stop!

Brady has it all over his sweatshirt which you can't really see here.

Only on the island!

All the kids

The boys all fishing in the backyard during downtime.

Hanging around after the wedding.

Family Photo!

Us!

Look, it's Uncle JOE!

Auntie Christa and her little honey Bubba

Relaxing



School House Beach - super cool rock beach (it's illegal to take any!)

Jax could've sat here all day feeding those chickens...

Jax had a rough couple days trying to get back on track and schedule - the joys of kids with sensory sensitivities! Brady had zero problems with it!

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