Monday, September 29, 2014

Crazy Days

Well... we are just plum-tired out from all the activities over the past week!
Jason and I celebrated our 7th wedding anniversary, and I'm certain the kids still don't understand what that means! Jason knows I love cake, so he brought home a small cake, and since it looked like a birthday cake, the boys INSISTED we blow out candles, but then they decided THEY wanted to blow them out. Hey, in the end I get cake, so everyone wins.

We've started Jax on his PediaSmart over the past week. I'm sending a thermos full of it each day, so he now gets it at school during the day. He gets one can of Pediasure through his tube at night mixed with the better stuff. I still have a case of the Pediasure left and am in the process of trying to get PediaSmart covered by insurance for the tube-feedings. And by 'covered' I mean a %. We'll always have to buy what he drinks by mouth during the day, but it would be nice to have SOME covered that goes through the tube at night (which is a medical-need).
I spoke to Jax's dietician last week and she agreed 100% to make the switch given his attention/focus/excited issues at school - and it's just HEALTHIER. She's also making me a specific recipe on how to mix the powder to create the needed calorie-density for the tube-feedings. She has to submit an Rx and a letter of explanation as to why he should switch. Again... it comes down to MONEY for insurance and medical supply companies - how silly sometimes.
My rep at the medical supply company told me to keep fighting because she thinks we are in the middle of real change for products like this and hopefully in the near future, the natural (aka - healthier) food products will be the new normal and first to be Rx'd and distributed.

If insurance doesn't accept our change, we'll just have to pay outright for all of it. It's just too important not to. But I'll keep fighting for it!

We had quite a busy last few days. I picked the boys up from school early on Friday to attend a family wedding reception in Appleton (2 hour drive). The boys danced their little booties off. Brady actually enjoys dance moves, where Jax kind of runs in circles and bounces off people. Knowing it was well past their bedtime, we put them in their pj's and they slept the entire way home that night.

We were up early and on the road again Saturday morning to Madison for the boy's first Badger game! They loved it! Jay had some tailgate tickets through his company, and our neighbors who have season tickets met up with us. The boys thought Camp Randall was pretty cool. We're hoping to bring them to a Packer game next year, so this was a good stepping stone for them!

My mom came to visit that night, so the boys had a day full of Nana on Sunday. They did crafts, board games, Legos, books and homework with her. We had a nice day out to lunch and to the Lego store for the boys to use up their Lego giftcards from their birthday - great day for them!

Jax started a cough on Saturday night, so that's been kind of a bummer, but his pulse ox stats and energy are good, so we're just supporting with nebulizer treatements. I sent him to school today and called in directions for his inhaler every 4 hours. I'm currently waiting for the nurse from the doc's office to call back stating if it's ok or not if we just continue as we are, or if I should run him in for a quick lung-check (he has silent wheezing/asthma that I can't ever hear). I'd like to keep him IN school and OUT of the doc's office as much as possible, but we'll see what they say. It's so weird to hear your asthmatic kid 'cough' after treatments, even though sometimes it might just be ok...

This is what a wedding anniversary with 6 yr olds looks like!

After they were in bed, we lit candles on the patio and had some wine and cake outside! Our neighbors stopped over for a sip as well!

Brady INSISTS on helping to cook everything now. So, I let him at it with an egg...

That landed on the floor...

After dinner screen-time cuddles.

I'm teaching Brady how to be safe around the stove and oven. So far he's doing great and is becoming my 'stirrer'. Jax isn't as interested, and isn't ready for stove-time either - we'll just leave it at that!
The boys loved the cake-pops at the wedding!

With Nana and Papa

When you have small children on your shoulders, you get free t-shirts thrown at you when tailgating!

The neighbors joined us for the tailgate party! The boys were so happy.

Jason watching the game VERY intently.

The boys and I having fun in the stands. They loved how the students do the WAVE and JUMP AROUND after the 3rd quarter.

Badger Love.

Building Lego People very carefully with Nana.

I woke up Sunday morning to see crafts made...

What's this? Well, a photo of Jax finishing his first ENTIRE Oreo cookie (Mega Stuffed)! He said his tummy hurt a little after, but he kept it down and it's a WIN!

1 comment:

Matt & Shana said...

wow it sounds like an amazing weekend!! congrats on the 7 year anniversary :) super jealous of the Badger game tailgating. I crave normalcy so much some days and a thumbs up right back to Jax on the oreo! way.to.go!