Wednesday, June 6, 2018

Overdue updates!

Hey all!

So, we've had a few updates over the past two months and I know some of you have been wondering how things have been going. I will admit that I've been posting less because now that the boys are almost 10 years old, their friends can GOOGLE them, eek. So, I'm trying my best to share their lives in a respectful way. I know many of you have been on this journey with us for the past decade and have a true emotional investment, so I will definitely try to keep y'all up to date on some of the bigger things.

So, let's talk about Mr. Jax and that feeding tube of his. He's been on a tube-free trial now for a few months and we've certainly had our ups and downs. He did ok at first, but at our last check-in at the hospital, he had lost a pound. With him growing so much, it really made his BMI go down. The doctor had recommended that he use the tube again for the summer.

Well, that brought a lot of tears from Jax, then me, then the doctor. So, we came up with a game plan to try another 2 months with a few changes. 1) Jax is trying the hunger-inducing med Cyproheptadine again and 2) we're putting heavy cream in all his milk-drinks. The doctor had a long talk with Jax to take responsibility for his body. I also can only weigh him once every couple weeks, instead of every few days since it's putting too much stress on all of us.

I can say that since then, I think he's actually gaining weight! We'll see since we check in mid-July, but I think he's doing better. I think it was a major wake-up call for him.

In other good news, he is also doing a trial without his daily asthma preventative medication too! He'll still use it during illness or extreme sports, but dropping a daily med feels so nice. He really only uses his hGH injections nightly now!

He has also been able to have a normal bedtime routine of no machine, or adult diaper... it's really amazing to live this way with him. I hope it remains  <3 p="">
The boys had their First Communion and felt like kings for the day - they were so excited!

The boys finish school TOMORROW! They'll be going to the LearningRx this summer and a few months into 4th grade. We have them in a program that will hopefully help with any cognition deficits to help process information for school. It's a big undertaking 3x/wk and 1 hr at home each, but it's worth it if it helps. Our goal is to get Jax back into the main classroom 100% (he's pulled out for his learning disorder, dysgraphia, for spelling and writing, as well as all tests). I have hopes it will help!

In other good news, I've started as a wine consultant for Scout & Cellar. A company that curates and delivers clean crafted wine - yum!

Our summer will be busy with baseball, LearningRx, vacation bible school, swimming, a few small trips and juggling it all... just the way I like it!
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Making bread for First Communion

Jax likes jumbo blueberries now.

I love seeing the boys hold hands with their dad <3 nbsp="" td="">

Some special gifts for some special teachers.

A fawn that was born in our front yard!

First Communion

A hot and sunny Memorial Day weekend

Nothing like Jax having flour explode everywhere in the car from a 'stress ball' he made at school...

More Memorial Day weekend fun - opened the pool at the gym.

A rare moment in baseball... Jax is pitching to Brady!

Aunt Mary and cousin Josh came to a cold late Friday tournament game

Jax passing his lung test!

A little Sunday night Karate Kid movie viewing.

Wine with NO HEADACHES! My new mantra!
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