Wednesday, December 23, 2015

We've hit the charts!

The holiday is upon us! The boys are home for school for about 50 days now it feel like :)
We did some end-of-year wrap ups this week in preparation to just celebrate and be with family over the next week.
Jax saw the surgical nurse on Monday to change out his g-tube and have a measurement. It turns out he fit better in a longer one and his pain seems to be so much better. Of course I have 6 extra g-tubes that are the wrong size now! Time to start hoarding the new size (g-tubes are about $350 each, so we rely on the allotted amount each year that are covered.
Then, Jax saw his Endocrinologist after for his 6 month checkup. He is growing SO nicely, which some of it is mainly due to being so healthy these past few months. He's missed 9 days of school, but none due to illness! I worry that we'll have a horrible winter of illness given our great fall-record, but how negative of me to think?!
So... Jax is ON THE HEIGHT CHART! He was just skimming it in June at his last appointment, and now he's at 7%! The doc had some blood work drawn up, but assuming that's all good, we're not increasing the hGH dosage for the first time since starting it two years ago. The doc LOVES his recent growth and said if he keeps it up, his health won't be so compromised when handling illness like last winter. Gosh, it's so nice to see this kid growing!

*He didn't grow on pace from birth to 9 months, then he got the GJ-tube that feeds direct into his intestines and he grew SO nicely, but we chose to move him back to the g-tube and start his stomach up to give him a chance to learn to eat and start developing his motor skills. Kids who have their tummies turned off too long risk never being able to use it, so we had a double edged sword decision. After that, his growth really fizzled out. He and Brady were the same length at their 12 month appointment and by age 4, Brady was 3" taller and Jax's health was really suffering. He barely grew from age 4-5 (you see in the photo at the top of this blog actually) so that's when we had to intervene. That's all called 'failure to thrive'. If a child isn't growing, they're not healthy, plain and simple. Thankfully, it's working and he's doing some much needed catch up growth to be a healthy short person :) (there's your backstory side note if you wonder why the heck he's having all these endocrine issues)

We hope everyone enjoys the Christmas holiday, we have a packed schedule of fun to see family everywhere. We'll be home until Christmas morning and then start the weekend tour up north. My brother flew in today, so the kids are pretty hyped up to kick it all off with their uncle visiting, and OMG MOM SANTA IS GETTING READY! (Let's take bets how early they wake us up on Friday morning)

The boys at church after their Christmas program last weekend.


Brady and I had an entire afternoon of cookie making after church. 

He wants everyone to know we were in aprons.

I'm surprised he helped the entire couple of hours!

These two fools camped out in the basement for the football games.

He had to decorate every.single.cookie. Jax came upstairs to decorate TWO of them. Then he was done :)

A quick couple-day-project of a new floor in the boy's bathroom and replaced trim in the first floor powder room.

Jax helped to change out his own g-tube on Monday! He took it right out!

Trying out his new sport belt!

This should protect him during baseball and basketball!


Monday, December 14, 2015

So Much Random December STUFF

Well December is just non-stop!

First of all, Jax saw his surgeon last week, and unfortunately had has some granulation tissue growing around his new tube. Basically his skin is trying to heal and close up the new hole. So, we had to burn the tissue in the office, which brought tears and me being upset for him.  I hate this.
But, I won't linger on that right now.

I've been keeping tricimalone cream on it and it's been looking better. Jax goes back to the surgeon office in a week to have the tube changed out, which we're wondering if he needs a bigger/longer tube size which may be contributing to his pain, so we'll find out. Jax also sees his Endocrinologist that day as well for a followup. I'm assuming they weight/measure him, give a quick physical and increase his hGH dosage. I'm interested to see if he's hit 'their' height chart yet. I say this meaning they measure Jax accurately.

The boys had St Nick come on the 6th, and their school holiday concert that week. It was pretty freaking CUTE. They did a bunch of songs, poems and the boys each played the triangle. Come on. Im trying to soak it UP!

We traveled to Minnesota to see Jay's sister and her family for a holiday celebration. During the drive there I had a dry cough, and by the time we got there, I was pretty much sounding like a frog with a nasty throat that slowly but surely turned into a cold - BOO! Kinda put a damper on my energy, but what can ya do?
The boys were obsessed with their new toys and playing with their cousin Aidan. It's always nice to see family.

The boy's report cards for their first semester of first grade are in. They're 'graded' in numbers 1-4, with 4 being advanced. The reports are pretty good. Brady surprised us with being advanced in a few areas and had a pretty incredible report. Especially for a kid who has an IEP and just started speaking in sentences in the past year. He is definitely on his WAY. Jax's report had some tough hits with 2s, which means 'developing', but overall pretty positive. Our biggest issue is when Jax had 2s listed under the 'effort' area of subjects.
I had a long talk with the boys and went over their reports. I kept it positive, but really needed Jax to know that even though he has difficulties in a few areas, the MOST important grade was the 'effort' area. Because even if he can't accomplish a perfect grade in an area, if he TRIES his hardest, we will be just as proud. He got a little emotional when I said "I know it's hard for you and it's not your fault, but it doesn't mean you can't try your hardest". We talked about organization, effort and routine and applied to how they see me and Daddy go about our days, they seemed to understand it then. I really want to keep them feeling smart, because once a kid thinks they're not smart, I feel like it's a downward spiral. So far, so good I think.
I personally think Jax is starting to have a tougher and tougher time focusing and regulating his body to complete a task independently (or even aided) but Jay thinks it's the same as it's been. It will be interesting to see what the teacher thinks. I'm wondering when the heck parent conferences are!

Otherwise, we're back to the grind at home and getting ready for the rest of the plans. I have a small 'much overdue' house project going this week with replacing the boy's bathroom floor (good bye 25 yr old cracked out tiles!) and tomorrow night the boys have their annual holiday party at KidReach where Jax has his feeding therapy, then Jay's work Christmas party on Friday, then we have some servanthood through our church on Saturday to brighten some people's day, then the boys have their Christmas program at church on Sunday and then we start the week of Christmas! Don't ask our schedule that week, HA! So, pray for health of the boys so they can do all these fun things!

This pic doesn't quite capture their excitment of St Nick surprises.

Quite possibly their favorite slippers ever! (Darth Vader and Minions)

A cute scene from Santina's birthday earlier in the month.

Brady being so helpful with filling up some boxes of toys to donate before getting any new ones this holiday.

Jax's new medical bracelet. We needed to update Jay's phone number on the back and I like to have his last name on it now that he's older. I like him wearing it when we go on long car rides in case of an accident.

The boy's ginger bread houses. They have different... styles.

Big B helping with food prep. I realized that my plastic cheese knife (LOVE this thing) is perfect for him to use.

B's project that was picked to be displayed in the hall during the holiday concert.

Jax wearing his elf hat and rocking the triangle during the concert.

Brady wore his Santa beard and rocking the triangle as well.

Of course the boys were on opposite sides of the room, so pics were tough.

A lunch stop in the Dells on our way to Minnesota. (classic Jax-face in photos lately...)

Brady with cousin Aidan.

At a very packed basketball game, the three boys snuck to the front to watch the game.

Anesah helping me out with Jax's nightly inhaler since I got sick and didn't want to touch Jax's breathing meds.

Aidan being a boss on the court


A lunch stop in the Dells again on the way home and a random monkey came by our table. Okay!
Stop the cuteness! We had some family photos and this one is SO cute!

Thursday, December 3, 2015

'Tis the season

The holiday season is in swing. I've been ordering, wrapping, adding decor around the house at the boy's request and finalizing all our plans for the month. The boys have a school concert next week, they sat on Santa at the fire station yesterday and their Sunday school class program is coming along. Oh, and Buddy the elf has been running around our house as well. They just love that thing, and I figure my years are fleeting here with their excitement about these things.

We got the surprise of seeing the firefighter who came to our house when Jax went into shock with his seizure last January when we were at the firehouse seeing Santa last night. It was crazy how he remember every single detail and how lucky we are. He was amazed watching Jax giggle with a friend and said he couldn't believe that he recovered from that. He was so happy that he did, but he shook his head saying most kids either don't survive or they have lasting effects. We are beyond blessed.

The boys had their dentist appointment this week, which turned out great. All of Brady's 6 year old molars are in, so we scheduled an appointment for his teeth to be sealed. I'd love a childhood without cavities if possible!
Jax's bottom molars are half in and none on top yet, so we'll see if they're in for sealing at his next 6 month appointment. The dentist said he still has a typical mouth of a tubie. Meaning he has a lot of hard plaque buildup since he doesn't chew as much as a typical eater. That hard plaque actually protects his teeth from decay - odd, hey?

As I was picking the boys up from school, I was able to talk to their speech therapist and Jax's special-ed director in the hallway quickly. We all quickly confirmed with one another that Jax hasn't been improving with speech or feeding. The special-ed teacher asked if anything neurological happened lately since his mouth motor function seems to be 'off' lately. Umm, not sure what that means, so I said.. "no?".
I got an email today from the speech therapist that she's going to start pulling Jax twice a week for individual therapy sessions and keep him with the group on Fridays. He's not progressing as much as we had hoped, so hopefully that will help. I contacted our feeding therapist to give him an update and to also ask if he could contact the speech therapist so they could get on track with each other on a game plan for him.

When I picked up Jax, I noticed he had a rubber sensory pad on his chair in the classroom. I asked him later that night if he's had that for a long time and he said he did. My heart sank a little knowing he was the only one in class to have one. I know it probably helps him focus, but ugh. I was hoping he'd be a little further along with his developmental delays, but it seems he's had to re-add services this year. I'm anxious for teacher conferences to be scheduled.
The good news is that Jax has passed into level 19 reading, which is pretty fabulous, so it's really nice to see him not struggle with one area. Maybe he'll thrive a little more over this year hopefully!

I have a feeling that Brady may not need an official IEP after this year since his speech isn't affecting his learning the way it was in preschool and kindergarten, but I don't want to put expectations on it.
He is kinda kicking butt outta school, so I hope it keeps up!

Sometimes I wonder if the boys are mirror-image twins. This happen if the egg splits late (which we know it did since they were mono/mono) and it often means the kids will have opposite physical features, which I don't even think the boys look identical so I can't see that, but they do have different dominant hands. Mostly I wonder this since they have different sided brain strengths. One boy is organized, a rule follower, gentle demeanor, enjoys drawing/cooking/crafts, is sensitive and quite thoughtful. The other boy is messy, unorganized, throws fits, loud and can be demanding, although extremely happy and kind. They do both share a similar demeanor of sweetness and wanting to please  people. One child has seasonal allergies, has eczema and is allergic to two medications and doesn't take any daily medication. The other child has NO allergies to anything and has a laundry list of daily meds. One has a brown eye and blue eye and freckles with straight hair, the other has both brown eyes, no freckles and curly hair.
Twins can be fascinating can't they?

Immune-support essential oils foot-rub each morning!

A few games at Ci-Ci's pizza with my dudes.

Shannon stopped by with the boy's Advent calendar, lucky ducks!

Brady helping me make rice krispy treats!

Visit with Santa at the Town of Brookfield Fire Dept!