Tuesday, December 5, 2017

Deep into the season!

We are deep into the holiday season, and the boys are filled with the spirit of the season for sure! They really wanted a family dinner for Thanksgiving - sometimes it's just the four of us at home going out to dinner since other family is usually tied up and out of town. We headed up to my mom's house up in Green Bay since my uncle was home from across the country and had a nice little dinner.
You can bet that Christmas threw up all over our house the next day and the boys couldn't be happier.
The only Black Friday shopping that we did was for a washer and dryer to go into the mud room when it's finished. I've found that online deals have been better than in-store shopping. I don't enjoy crowds and running around like that anyway so it's been a win/win for years!

We're trucking along pretty well this season. Our decorations are up, cards are sent and presents complete - just need to WRAP them ;)

The boys had a small holiday concert at school where we watched Jax sway back and forth throughout every single song. It was so cute to see that one kid rocking, so it was never hard to spot him.
They are now preparing for their Nativity play at church. Jax is pumped to play the role of Joseph and Brady is a shepherd and a narrator (as requested). I just found out that the Sunday School director has a family emergency out of state, so I will be directing the play with other teachers (OMG). Pray for us... lol

Jax is doing pretty well with his altered tube-feedings. He has some pretty decent days of eating, which is promising. But he definitely still has some lousy meals too, so I try to not get my hopes up too much. By our weigh-ins at home, he seems to have possibly gained some ounces so far. I'm not sure how accurate that is, but we do know he hasn't lost any weight. He'll be officially weighed in at the hospital on Jan 23, so hopefully that proves to be hitting some weight-goals.

We're looking forward to a very busy couple of weeks here with St Nick visiting tonight, a basketball tournament, holiday parties and the play. We hope you all enjoy the hustle and bustle of these next couple weeks leading up to Christmas!

Jax didn't enjoy the quiet outdoor time, but it sounds like Brady did.

Helpful boys!

I still find them cuddling.

And sitting around like this...

And visiting the guinea pig like this...

Thanksgiving at Nana Jayne's

Aunt Jessica was trying to help with Jay's sore back.

The boys love getting their annual lego Advent calendar from the Bonins

These two upset during the Steelers/Packers game.

Such a turkey

Brady playing the bells at his concert.

We always catch Jax sleeping with that ELF hat each year!

Jameson and Santina's birthday party!

My studs looking sharp for their concert.

Monday, November 13, 2017

Here we go!

We finally have the green-light for the first step of weaning from the tube at night!

Jax had his GI/Nutrition follow-up at Childrens last week and I wanted to ask for a trial without the pump to see how Jax would do (the pump is the machine that Jax is hooked up to at night while he sleeps that feeds him). I knew in my heart that I would not be granted permission given his current weight (52 lbs), but I certainly expressed my yearning to try something. I thought of this when we were up in Green Bay staying at my mom's house a few weeks ago. I put Jax on the pump and forgot to take the clamp off. The machine didn't stop and alarm, but rather blew the extension right off and fed the bed all night instead of Jax.
In the morning, he was hungry! He ate two pancakes! So I thought that maybe he is ready to start taking all his food by mouth now, but we're making him so un-hungry each day with being fed all night. Possible?

The doctor and dietician agreed, although with him still being so thin, and growing taller each day, his BMI wouldn't allow us to just take out so many calories each day. So, we made a game plan to try. We cut his nightly tube-feeding in HALF, which may not seem like a big deal, but to us, it's HUGE. It allows us to do a few things:

1. Jax is only on the pump now for 2 hours, so I remove it before I go to bed. This lets him wake up not connected to a machine each day - freedom!
2. Jax can start working on overnight potty training now. While it's tough that he'll be fed for 2 hours while sleeping, which will make him most likely have to pee, he at least can work on getting UP to use the bathroom. Have you ever potty trained a toddler by filling their stomachs with liquid and then going to bed?? :) Crazy train for one please!
3. He can possibly be HUNGRIER now to eat his calories that he didn't get overnight.

We have to increase the potency of his protein drink (less water, more powder) and also change the way he drinks it at school. Snack and lunch and no in between!
I have to weigh him every few days at home to be sure he's maintaining and then starting to gain, and he also has to have an official weight check on record in 2 months at the hospital to stay on top of his weight/health while we do this.

This is one area of parenting a child like Jax that a lot of people don't understand. We, Jason and I, aren't allowed to make these judgement calls ourselves. It's hard wanting to try different things, but knowing that we need clearance from the hospital to do it. If I just cut his tube-feedings in half to try it and for some reason, he got sick, or lost a bunch of weight, we would be held liable for not providing his medical needs.
It's a line we have to walk as parents to get things cleared and wanting to push things forward. Everything we do is for Jax to live the best quality of life he can, but we have a team of people that all have to agree before any moves are made. Sometimes, it's hard to sit and wait for an appointment and then to feel like you're asking permission, and then to know that the trial is totally on your shoulders to 'work'.
We've been having a ton of talks with Jax so he can take some personal responsibility and to know what's on the line. I find myself stressing with each meal, and reading every single label for maximum calories at the store.

The plan in my head, is that we crush our goal with this half feed, and then the docs let us cut that in half (that would be about 6 months from now), and then if he could crush that goal (6 months from then), then maybe... they'd let us try no tube. Jax has to go one full year without ever using his tube - even through sickness, in order for it to be removed. So, you see, if Jax starts phase 1 right now... he has a chance to live tube-free in 2 yrs if it's seamless. It's a process, and I've always known that. I explained it to Jax yesterday that there's a long-process that he's literally just begun.

I know there will be set backs, so I try to not get my hopes up too high, but I just keep thinking - age 12. I'd love for him to get it out before his official 'teen-years'. I don't know why, other than I'd love for him to worry about totally normal teenage stuff and not this.

So here we go... and we are 4 days into and so far, he's crushed it :) Turns out he loves 260 calorie kid-cocoas from Starbucks...


This kid took school re-take photos without us knowing!

Ouch... the teams mix up for the next tournament, so there's hope :)

Fun night to a comedy show and dinner with the Niagra crew!

Slowly but surely, coming along.

The official sink cleaner for toothpaste. After walking in and finding Jax cleaning the sink with his own toothbrush ::SHUTTER::::

Afternoon with Jax running errands, yes he walked around like this

I 'caught' him making a phone call to Santa (MELT!). I guess this phone has Santa speaking in it.

I'm going to really soak up this year's Santa with them... 

Apparently you can't heat milk up in a tea kettle....

Trick or Treat!
First buck with his bow. The boys go up with Jay next week and will sit in the stand for the first time one afternoon to get a taste of it! Hunter-safety next year already, wowza!

Sunday, October 29, 2017

Fall y'all!

October has been pretty cool (and cold, ha).

We got up to Green Bay to see some family for my grandma's birthday, so that was nice to see everyone and not have to wait until Christmas!
On our way up, we stopped at the dermatologist to have a spot on my arm checked out. Ugh. I had to have a quick procedure to have it removed. The doc was pretty confident that it was a keratoacanthoma, a type of non-aggressive skin cancer. Now if getting this done, while on your way back home to attend your 20 yr class reunion doesn't make you feel old... HA! Oh, life.
So, I get the stitches out this week and the doctor has already called to tell me that pathology has come back positive for a keratoacathoma. The good news is that it's not worse, but the bad news is that it was positive, so I will now see the derm every 3-6 months for life now. Such is life with fair skin.

Jason and I hosted a customer appreciation event at an apple farm (Apple Holler!) last weekend and even though it was super cold, it was pretty fun. We had a campfire with treats, apple and pumpkin picking and tons of farm fun - a great family fall day for all!

20 yrs!

Working on turning over the playroom to a man cave.

Weekly Sunday night bb practice.

Getting a ride from cousin Nate during Grandma's birthday lunch.

A promised lunch-treat for running errands with me on a day off of school! (They're watching basketball, of course) 

Kids during our client appreciation event.

Jax-man with me!

Framing on our addition has begun!

Pumpkin carving with their babysitter