Saturday, January 6, 2018

Hello 2018! Boo for the flu tho, blech!

Hello 2018!
We had a pretty great year of health and development for these kiddos. We had a super busy December that I'm still trying to recover from!

The boys played Joseph and a shepherd in the Nativity Christmas play, which was beyond cute. This was their last year for the play, so I soaked it up. We had Christmas celebrations back 'home' a few hours north a couple different times, so that was some driving back-and-forth on 3 different occassions. We had a really nice Christmas eve with cookie baking and a viewing of Home Alone, but then back up 'home' Christmas day. My brother and his fiancee' came from Portland Oregon for the week, while we also had a get together with friends and godchildren, a neighborhood party and then it was New Years! Thankfully we stayed in!

We've been looking for someone to fill the role of vacation-nanny for us when we're away on trips, or if gone overnight. The ladies we've had over the years have all gone on to get married and have children. Finding the dependability and comfort in someone else was giving me anxiety! My friend uses with great results, so I gave it a try. We got SO lucky. A woman who recently retired as a college professor was looking for a couple families to care for on an as-needed basis. Her daughters moved out of state and she wanted to enjoy retirement, but still wanted to be needed. She is WONDERFUL. The boys liked her and we really enjoyed our time with her. Her references were very impressive and she's local... I'm so happy we all found each other! She had researched g-tubes and injections before coming as well... pretty cool. She's not intimidated with his medical care at all, (siiiiigh of relief!)

Jax has been doing really well with his feeding and the lowered amount of his tube feeding. I think he's gaining weight, so I'm optimistic about his weigh-in at the hospital in a couple weeks. I have lofty goals/requests to the docs if he does show a nice gain. I'm definitely getting my hopes up!
I had to change the product he uses for his milk drink during the day. I've finally just realized I can mix chocolate Carnation powder with whole milk to provide the calories and vitamins. Since his diet is better as well, I stopped fighting it. It turns out he loves it. I'll call that a win.

I'm hoping this sudden bout of the FLU with Jax doesn't mess up the weight gain.. yes, he has influenza A...boooo. He had started a cold on Thursday so I had the school give him his inhaler, and he even went to basketball practice later that evening. That night I realized he was a little warm during our bedtime hug. He was just under 100, so I was thinking, "hmmm". By the morning he was definitely down for the count and his temp spiked to over 102. His coughing wouldn't get better with his breathing treatment so I popped into his doc to check his lungs with his asthma that afternoon. The doc said he was doing really well, but with his fever (he rarely ever gets a fever, it's been years) and his achey legs, she wanted to swab him for the flu so we could treat him with Tamiflu and steroids just in case with his history.
Sure enough, it came back FAST with flu-A. The doc thinks he doing well because he had the flu shot, but who knows. Flu A is supposed to be the worst of the flus, so I'm slightly shocked how well he's doing.
He's continued to eat small meals and take fluids by mouth. The fever is relentless, but his lungs are doing well. We're on day 2 and I hope it stays the course and doesn't get worse - wish us luck! It's been 3 years exactly since such an illness has hit, but I can honestly say he is such a stronger kid this time around!

Big B on the court

Santa and his elf ready for the holidays

My fabulous niece Marley

The Bonin & Berger Bunch kiddos

Christmas program

A common scene at our house over a 10 day period

A couple of uncles and Jay hanging at a party

Jason and Uncle Adam showing the boys some cribbage skills at a downtown lunch outting

Brady modeling some Harry Potter pjs from Nana

 A pj-NYE night!

Christmas morning scene

Grandma Laura with the elves

Jax still wore that elf hat to bed most of the season

This little video cracks me up. It's Jax trying to make some free throws. His reaction at the end is my favorite. 

You're welcome.

Jax got nervous and then realized Santa's hand was on his tube. He asked Santa to make this his year to be done with the tube... I'm not crying, YOU'RE crying!

Harley Museum fun with Uncle Adam and Aunt D

BINGO fun with the Bonin kids!

Holiday taco party with the Spielbauers!

Jax and these turkey legs from Uncle Dave's house. Funny how those are at MY house now!

Brady runs a tight ship.
A cribbage playing motley crew with Adam and Danya visiting!

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!