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...


Eating!

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


Sunday, October 8, 2017

3rd Grade is a hit!

Well, there went September and we're knee-deep into October already! We seem to have a busier than usual fall this year. September had me out of state for my cousin, Alyssa's wedding in Wichita. The following weekend we were out of town with the boys for Jason's cousin, Nick's wedding.
Jay and I were able to sneak away the following weekend for our 10 yr wedding anniversary. We went downtown Milwaukee to just spend a little time together, and it was really nice. And that wrapped up September!

October is proving to busy as well, but I think November slows down a little bit - so far :)
This weekend we'll be getting our family pictures done. We did them during winter last year, so we're trying to mix it up between fall and winter every other year. The following weekend is my 20 yr class reunion back home in Green Bay, and then we end the month with a big client event that Jason and I are hosting at a large apple farm. What a fun fall, y'all!

Jax had his 6 month checkup with the Endocrinologist to check on his growth and adjust his hGH medication. Jax officially caught up to Brady in height! The doc was so happy to see them the same size and said Jax will probably pass him up a little bit when all is said and done. Brady's growth was stalled at birth - meaning he was small for his gestation, but since he never had GI/Feeding issues and stayed on his skinny curve, we didn't have to intervene. But that also means, he may come in under his intended final height, whereas Jax has the hGH to give him the best chance at his intended final height - so we shall see how that all shakes out. Either way, they are HEALTHY and that's all that matters.

Jason and I did the hearing for the Medicaid coverage a few weeks ago. I don't have a good feeling about it, but we shall see. We worked so hard to get Jax on Medicaid, and half the reason he was accepted was because he's dependent on a feeding tube, but then they don't want to cover feeding therapy (to continue trying to getting OFF the tube). So, if they don't cover it, we will still provide it, which would make it pointless to have Medicaid if we're blasting out our 'OOP' max on our private insurance (sigh) we shall see. What upsets me most is that there are many kids out there who don't get therapies if not covered by insurance... so a kid like Jax wouldn't get the opportunity to rehab to a full eater some day. Will he? We hope so, but it's the therapy that keeps the hope alive!

Anyway...the boys are plugging away hard at school. Jax is doing a spelling test each week. A few of the words are with the class, but most of them are with his special teacher. He really struggles on some words with mixing up the letters or inserting letters that don't have any sound to the word at all, but with repetition and only two words a day, he's been getting all 100%. Which I tape on the wall next to his bed so he feels pride for it.

So far 3rd grade is a big hit and I hope it continues!


A family wedding
The boys with the Endocrinologist.

3rd grade pics - Brady told Jax he looked 'creepy'.

Nana and Papa with the boys at the wedding.


I still find them wrapped up in each other when watching TV or the iPad.

Us sitting in the corner of the gym trying to stay awake since the boys didn't want us following them around during the sock hop.

The boys kept running to us to show us the prizes they won.

Jason and a friend took their boys on the train down to Chicago for the Bears vs Steelers game.

Memories for life.

Wednesday, September 6, 2017

3rd grade!

Summer is done! We had such a fun and eventful summer, so we definitely feel full and are ready for the next season of change.
The boys have settled easily into 3rd grade so far and seem like pros. Jax isn't too bad in the mornings, but I can tell we need to work on a few things again as we get back into the routine. We are so lucky to have decently easy mornings since the bus comes just after 8am.

We had an interesting little loop of events with Jax and his leg. Last week he had complained that his left calf was hurting him and he'd hobble when he'd run. I kept telling him to just wait it out and it would feel better soon. Once we got to the week-mark, I called the pediatrician and she had us come in for an exam. We ended up going in for an X-ray the night before the first day of school. The results from that were good, so after Jax got off the bus that day (still hobbling) we had to go in for another X-Ray of his hips to make sure his growth plate didn't slip (being an hGH). That also ended up being good. So, we assumed it was a pulled muscle and wanted to see how he was after the holiday weekend.
Enter Monday/Labor Day... Jax came in the house late morning unable to WALK! Jason and I were shocked and finally worried. I had my pediatrician paged and she had us go to the ER. Once we were there the doctors were concerned as well, so they did a full blood work up and more X-Rays. After about 5 hours, the doctors and I were able to get the story from Jax (a bruise formed on his knee) that he was running in the yard and fell and hurt his knee.
(sigh)
So... while his calf was still mildly sore, he fell on his knee causing the inability to walk - two different (most likely) benign issues.
With a little ibuprofen and a night of staying off his leg, he was FINE for school in the morning. He is still hobbling slightly from that darn calf, but we're not very concerned. The ER doc assumes Jax's muscle was pulled and his muscle tone is just taking a long time. Jax will see his endocrinologist for his 6-month check in 2 weeks, so we will certainly circle back around to him.

This kid.

So my little boys aren't so little anymore. At dinner, I asked them all about the kids in their class, and who were old friends, and who were new friends. I asked if there were any cute girls, and Brady's response,
"Mom, that's so inappropriate to ask me. I'm not ready to talk about it."

((blink blink :::stare:::))

Ok then.



I cleaned out the supplies and made a large donation to hurricane Harvey kiddos - we hope it helps!

The boys enjoying some go carts on the last day of summer (it was chilly outside!)

Trying to see the darn eclipse on the cloudy day!

Last days of summer fun.

We saw an awesome Lego display at the mall. We toured the entire place and saw tons of different US buildings!

Jax got a new pair of eyes!

A super cool birthday party!

Talk about a neat birthday party!


There was ONE sunny warm day to see the pool!

Brady at his open house!

Big boy desks!

First day of 3rd grade

They were pretty excited


So were we!

New fro-yo place across the street!

Fun annual Labor Day party. We found all the kids watching a movie projected on the garage door!

Jax and that darn leg.