Wednesday, January 24, 2018

It's Happening. The Trial Begins!

It has taken 9.5 yrs to get to this point, but we are HERE. I had Jax at Childrens Hospital on Tuesday for his yearly check in with the Rehab Clinic for his muscles, so we stopped in the Nutrition Clinic for a weight check since we cut his tube-feedings in half last November.

He gained (1.5 lb) since then with less feeds AND had the flu in there, so I thought it was worth asking for a trial with no tube. So I emailed the team and anxiously awaited their response. They responded today that we can do a 7 week trial of no tube-feeding, but Jax has to drink his carnation-milk before bed, which equals half of the overnight feed he's getting now. That means he needs to get in 30oz of his carnation milk every day, and hopefully with less food overnight, his hunger will get better to EAT more food during the day.

This is a challenge. I'm on him all day every day about food. His hunger and volume has gotten better since reducing his overnight feed, and even his feeding therapist agrees. But he still struggles. I'm hoping this trial will give him a sense of what he needs to do. He's taking a lot more responsibility this year with his age.

We'll need to find a way to not feel total defeat or devastation if on March 19, they say we need to go back to using the tube. We've never had a trial like this before and the weight of the trial feels slightly overwhelming, but hey... we've got to try!

3rd grade b-ball studs

I'd like to point out that I said NOTHING watching Jax wipe his face between shots... 

Teacher in-service day = pajamas and Christmas gift usage.

Some cool hats from Uncle Adam and Aunt D

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.