Hope

Hope

Thursday, February 4, 2016

It's official...

I've been suspecting this for the past couple weeks... Jax officially weighs more than Brady! About a pound and a half more, huh!

Jax has been gaining weight really nice lately. His tummy is round and he has meat on his back and on his legs. His low muscle tone isn't as obvious in his legs. His arms are from his mama, so they are still twigs, but I've loosened up his inner-pant-belts which is kinda cool :)
Since Jax is 2" shorter than Brady, he's still about one size smaller in clothes, but he's right behind in shoes suddenly! Jax's feet grew 2 sizes on us after being stalled out for SO long. Brady was 3 sizes larger than him and now he's only 1 size larger, it's crazy!
I wish I could say this is because he is suddenly eating more. He's drinking a lot of his protein drink during the day and he also has a large tube feed at bedtime. He's keeping it down, with having less illness this year, so it's so great to see him growing like this. His BMI is decent since he's short. The endocrinologist told me that once Jax is able to have a great run, his hGH will work better in his body and make his stronger and bigger, thus equalling better health, so I think we're just starting to see this really work.

Now, of course... Brady's weight is a little bit of a bummer since he's not gaining much at all with having Jax catch and pass him like this. He weighs just over 42 lbs, so that means he's only gained about a pound since his birthday last July (Jax gained 5 lbs). So, we're going to start having Brady drink a protein drink at breakfast or before bed. He eats like a baby horse, so clearly it's just a high metabolism. This kid likes his snacks and treats, and we have high calorie real food, real butter etc... so it's just his genetics I assume.


Prayers

Jax is a maniac on the court.


My monkeys!

Thursday, January 28, 2016

Back to the norm

I was waiting to update until after Jax saw his surgeon on Tuesday so I could give an update. The appointment turned into an in-office procedure and we were there half the day. Jax got numbed up and the doc cut into his incision to look for the stitch that apparently doesn't want to dissolve. He couldn't find the stitch, but to cover all his bases, he uses silver nitrate to cauterize the area. It's healing up well so far and hoping this is the end of it! Jax is such a trooper.

Jax was off of school for 10 days though because the cold he had did turn into walking pneumonia like Brady's, so he had to take an extra day off for the medication to work and then it was a 4-day-weekend off of school.... neat! So, everyone is back at it. I also was given meds from my doctor, so we are all finally back on track.

The boys are in full swing of basketball, and I was able to capture a short video of how the kids and coaches are introduced for each game, it's FANTASTIC! Jax was recovering really well by the time he had his game on Saturday, but the tail end of a cold and an early morning sport equals a little disaster for Jax. He puked up mucus on himself during warm ups and then had an asthma attack during the game prompting me to jump in and have to rush him to his backpack for his inhaler (which he had a full nebulized treatment an hour before all this). Nothing like an entire gym of people nervously watching this little boy take breathing meds to see if he'd be ok... ugh. He'll be better this weekend I'm sure, but I can't wait until the games start to get later each year (the younger kids go first thing in the morning).



Boys at Monster truck with Jay

The entrance before each game, it's awesome!

Finally exchanging Christmas gifts with the Bonins!

Super productive grocery trip with these two monkeys in tow!


Don't let the smile fool you. This kid is nervous after dumping blue berries at the checkout. We're waiting for a broom right here...

Waiting for the numbing cream to work.

The incision site after the doc fixed it up.

Tuesday, January 19, 2016

Finally hit

Apparently our house likes to go down in health this week every year! I have no idea if my essential oils help THAT much with our immune system, but I ran out of my specific 'immune combo oils' last week for about 3 days, and Brady started a cold. It may be coincidence of course, but my goodness!
It's so hard to contain colds between the boys since they pretty much sit on top of each other when playing video games, playing on the iPad or reading books. And they're little boys, so they're gross in general with their germs.

The boys each had their "half birthday" parties at school on Thursday. Brady's teacher told me she could tell he wasn't feeling well. He had a cough and gross nose, but seemed OK at that point. It was the same on Friday, and the boys even went to a birthday party that night, which gave Jay and I the opportunity to go down the street to a dinner alone (AMAZING). Brady had energy and seemed to be fine. Well, later that night he suddenly spiked a fever. And with so much history with Jax, I know that spiking a fever on day 3 of a cold can mean trouble. Sure enough, Brady was up hacking all night long and he was down and out on Saturday. (sigh) Poor kid.
I called his pediatrician (who had no openings that morning) and the nurse said he needed to be seen for sure, so I brought him to a children's urgent care. Turned out he had 'walking pneumonia', but we caught it early, so he's bouncing back quick after some medication. He stayed home Monday and is back at school today with a checkup with his doc after school and then we run to basketball.

Now Jax... he seemed to escape the cold, but then started a cough (along with me) on Sunday. He was doing fine until last night he coughed non-stop. So, Jay and I were up and down all night giving him breathing treatments. His pulse ox was fine all night and he never started a fever, so we'll just continue to treat and hope he purges it without complication. He was home Monday as well, so our house is kinda a big ole' germ fest. I'm disinfecting everything that I can today in hopes that Jay doesn't get it. Jax will get breathing treatments every 4 hrs at school, so hopefully that just helps him get through the day. Jay and I take bets on if I'll get a call to get him... ya never know with that kid!

Jax also has an appointment to see his surgeon next week Tuesday to see if anything needs to be done with his incision. It keeps exploding and then crusting every 3 days and the nurse told me over the phone that a stitch is trying to get out. If it doesn't fix itself by next week, we'll see the doc. He'll see if he can do anything. The worst case scenario is surgery, which is NOT on my radar as an option, so I hope they figure it out!

Jay and I met with Jax's school team on Thursday and it was a good meeting. Our fears of Jax disrupting the class or having some behavior issues were squashed. The teacher said that Jax gets impulsive and shouts things out just as much as any of the other 'active' boys, so he doesn't have any outstanding issues that way.
As for his breakdowns at home with homework, they just don't want to send any home anymore. Which sort of upset me, because I don't like him to be treated so differently or for him to get a free pass (which could keep him from progressing in school), but they said he has a pretty severe fine motor deficit and we're just torturing him with 'making him' use a pencil. He'll of course read (which he loves) and do his math program on the iPad.
They are downloading a keyboard app for his iPad at school and sent the link to me to get him for home. They truly don't believe he'll be much of a penmanship writer and he will just have to be a keyboarder and be tested that way instead. That bothers me too, like we're just giving up on his motor skill, but the special ed director reminded me that Jax can't even drink from a milk carton without a straw, so we need to keep him excited and happy about school and not to push too hard on areas he truly can't help. I get it, I do. I just need to ease into some of these things that I expected he'd be able to do.
One area that really confuses us and the teacher, is that Jax is way above grade level for reading and he does it with ease, but yet he can't spell well or recall details for stories or drawings. The teacher said that students typically exceed or struggle with reading/spelling together rather than being able to do one and not the other, so he's such an enigma!
The good news is that the teachers all said he's super happy, has tons of friends and people gravitate toward him, so being in the special ed program with all his aides and therapists aren't affecting him on a social level. I think it's important for parents to hear that since we'll always worry.

Brady's class during his little celebration.

A bunch of crazy kids

7 year birthday party for one Jax's classmates.

My buddy Big B on day 4 of a cold, see how he went down :(

Sunday, January 10, 2016

Basketball has begun

We've had a quick week of busyness. The boys started Upward Basketball with practice on Tuesday nights and games on Saturday morning. Jay is the coach and considered a "Spiritual Farmer"...
The league is Christian based at a large non-denominational church in our area, so it consists a lot about character and team building instead of just learning how to play. So far, it's much more organized than what we did last year at the Y, and I think it will go well.

The boys have been loving all the NFL playoff games this week and talk about it nonstop! This upcoming week is even busier with some fun upcoming events. The kids have their 1/2 birthday celebration at school on Thursday (how cute/funny is that?), then a birthday party of a classmate on Friday night and then some more playoff craze in our house over the weekend.

Jay and I will be meeting with Jax's school team Thursday night to discuss his progress so far. Most notably to discuss his challenges with focus, fine motor and keeping his motivation going since he gets so discouraged and upset with homework (basically anything that requires a pencil, marker or crayon causes a breakdown). So, I'm hoping for a good meeting and some adjustments or at least suggestions.

First practice

Jax hanging with some new teammates... who tower him, lol

Jay giving some bible readings and encouraging words.

Fabulous :)

The ever-changing incision

Keeping it clean with antibiotic ointment on it and some Frankincense oil around it. Seems to be in a healing stage now.

Brady doing what he does...

Jay doing what he does...

Sunday, January 3, 2016

Holiday tour complete! GOOD BYE 2015

Our holiday tour is finally complete. December was pretty crazy with all the travel and things going on. My brother Adam came in town from Portland, OR and we had 2 days of travel. It all worked out well, although my poor brother got caught at the airport for 2 days trying to get home when a snow storm decided to come!

The week after Christmas was really nice to have to get caught up at home. Jason was in and out and we still found ourselves to be busy! We took down the Christmas decor today after church and think we're ready for the typical chaos to start back up tomorrow. The boys start basketball on Tuesday, so they are really excited about that. We're hoping to meet with Jax's team at school to discuss his current progress and how to help more at home since he's really struggling to sit down with homework (most notably having to write). His teacher emailed me back saying they would get the team together and let me know some times they could meet, so I'm interested to see how that goes. Otherwise, I'm hoping for a very uneventful couple of weeks to get things calmed down here for awhile. I'm happy to see 2015 gone and hoping for a much less dramatic 2016. I know life will always have ups and downs, but there were too many extremes for me in a one-year time frame. We had some great positives of course, which we're so grateful for. I'm sending up some major requests of simplicity to the Heavens...

 No news is good news in this house.

Lots of video football with Uncle Adam

And they always get a bedtime book in too.


This is how the guys play basketball in the kitchen...


Cards and wine Christmas Eve when kids went to bed.

Santa came!



Father Dick read The Christmas Story and then sang a few songs.

Hoffman cousins at Nana and Papa's house Christmas night
My side of the family the day after Christmas

Miss Marley with the twinkies

After Christmas tour chill time

Brady helping with chili. I'm hoping this kid is cooking us full meals in the next couple years!

Holiday break play date with Jackson, while Jay spent time at work.

The kids loved all the new snow!

Running around our backyard!


New Years Eve afternoon Star Wars movie!

I love finding the boys playing Wheel of Fortune and working on spelling!

Brady's reaction when he found out he can use his kid Go-Pro to be a "You Tuber". (sigh) He said it's his DREAM.

One of the last days of holiday break, we watched cousin Kyle play downtown. He plays for Concordia in Chicago and they were in town this afternoon.

Jax's tube area feels better with the longer sized tube. But I have to keep treating the area since granulation tissue keeps growing. Now his original tube site closure has this weird large bump protruding out. I'm hoping it's just a dissolvable stitch working its way out...

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.


The CUTENESS!

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!


HE'S ON THE CHART!