Wednesday, October 21, 2015

"Sometimes, life hands us a PAUSE button"

"We fill ourselves with busyness to distract from the painful beliefs buried deep within that we are too afraid to address.

And then sometimes, life hands us a pause button—a shift or change that wasn’t in our own expertly controlled plan. In other words, we are woken up, finally fully aware of the whole of our life’s present experience; for better or worse.

Though it often presents as an obstacle or a struggle, it is usually an opportunity to realign with our soul’s path if we are willing to surrender, be open, and listen."   -Jadi Engels via Divine Burnour: A signal from the Universe

That quote can probably speak to everyone at different times in their lives. It struck me this past week for a few reasons.

Jason and I had a few conversations this month about Jax and his g-tube. We had been on a journey and a path to get him weaned off of it and to become tube-free. We've supported him in every possible way we knew how to. He's been in inpatient feeding therapy, quarterly feeding team meetings, weekly private feeding therapy, hunger-inducing medication, nightly hGH injections and tube-feedings.
Well.. here we are, past the age of 7, and he still struggles to eat. He just doesn't experience hunger the way the rest of us do. He also dehydrates easily during illness... so, we oddly had one of those talks recently about how we're not 'actually weaning' Jax off his tube. I feel like we're living with the tube as part of our lives and not actually trying to get rid of it, like we felt when Jax was 4 and coming out of his inpatient feeding therapy.

Jax had a GI specialist and dietician followup last week. He is growing nicely and looks to be skimming the bottom of the height chart finally after more than two years of injections! We'll know for sure at the Endocrinologist appointment in December. Jax's weight is up to 39 lbs now, which is great, but it's of course, not great. He requires MORE calories, which most likely will be added to his night feeding at almost 20oz now. That feels a bit like a step backwards since Jax is already at capacity at what he'll consume at a meal. The more food we can get in him, the better the growth hormone will work and the more he GROWS, the healthier he'll be, and less chance for emergencies have a chance to happen.

The doc examined his tube-site and sat me down for a "talk". We've been holding off on fixing up Jax's tube-site with all the prolapse coming out, because we were always 'weaning' him off it. Well... the doc had one of those "come-to-Jesus" talks with me, to tell me what I already knew in my heart, but had refused to actually accept. Jax isn't coming off the tube anytime soon. The doc said he won't know a childhood without it, and that puberty may really help. He also said that if somehow Jax suddenly started to eat all his calories, they would never allow the tube to come out until after two to three full winters of illness without ever using it. 
Hearing it out loud is a knife to a mom's heart. No one wants that for their child. Especially a child who has been telling us lately that he doesn't want it and doesn't want friends to know. The doc then went on about how we have to get Jax into surgery to close up the current tube-site and put a new one in a different area of his stomach.

That damn PAUSE button was pushed. Time to reassess our goals.

It took me a couple days at home to pull together what to say to Jax since it needed to be positive... imagine having THAT conversation with your little one.
Jay and I sat on Jax's bed last weekend and I was pretty 'matter of fact' about it. He never looked up at us as he played with a Legoman. Brady kept interjecting questions, mainly asking if he'd be at the hospital during the surgery. Jax finally asked a couple simple questions, mainly asking if he'd have 3 belly buttons now and things like that. He suddenly looked at the clock and started to SOB telling us we were wasting his time and that he needed to read.
We could tell that he was upset and trying to process this new news. He's been ok since and we try to talk about it off and on when we can so the subject matter seems as matter-of-fact as possible and that he can ask questions. We collected a few that we said I'd ask the surgeon during his consult next week Thursday. I assume the surgery will be done in November. I'm sure we'll find out during the consult. This is the same surgeon who placed Jax's tube when he was four months old - how crazy is that?

The doc and I also discussed how Jax still has no hunger and struggles with fine motor skills, low muscle tone and growth. There is a possibility that he has Russell-Silver Syndrome, so we are going through the process of testing for this. Right now we are waiting on pre-approval from insurance to pursue the genetic testing part of this syndrome, which may take a long time. Only 60% of RSS patients have a genetic blood result resulting in a diagnosis, so it may be a clinical evaluation with the specialists. If you read up about the disorder, Jax definitely fits a lot of the symptoms, but not all of them. He does have 3 of the 4 main symptoms and many of the secondary symptoms. As with most disorders, everyone has varying degrees of it, so that's why people of all ages go undiagnosed with various ailments for years I guess.

I've found so many identical-twin-parents on my SGA support site through the MAGIC Foundation suggested from the Endocrinologist, who has one twin with this disorder. Apparently, blood flow variations in pregnancy cause the epigenics responsible for this disorder, so it's definitely a possibility and why it would be an issue for identical twins more than fraternal since fraternal have all their own blood sources.
The good news, is that if Jax does have this, it's really nothing more than an ANSWER since he already gets the 'treatment' for it. Which is hGH injections and tube-feedings. An answer would be nice as to why Jax is so different from Brady medically, facially and muscle-wise, and it would also give him a better protocol for hypoglycemia-issues with fasting/surgies/illness etc. (Which Jax proved to us this year is a problem for him). The only tough-news about it, would be that we wouldn't have our sudden-miracle of no issues. But hey, after all these years, if this is the answer compared to other possibilities, we'll take it.
But no matter what I say, do or read, he either has it, or he doesn't and I have no power over that. We shall see, and of course I'll update as steps occur.

When looking at their facial differences, it's definitely Jax's triangular features that creates the most differences. Who knows tho...

The other PAUSE button was pushed for me last week when I showed up to a meeting with my director and found out my position was being eliminated, the next day. I worked in a very small division, and they can't afford the luxury of an 'Operations Manager' any longer and every position has to bring in sales. My director was very upset, and I worry how they'll get by, but such is life I guess.
This really bummed me out since I really did enjoy my job and it worked out great for our home-life, for the most part. I was having a little trouble helping with the kid's homework and making home cooked meals, but it was working out most of the time.
Thankfully, I've been given a severance through most of November and then there's always unemployment.

Jay and I assessed everything this weekend, and his support has definitely made it easier on me. I've come to believe this PAUSE button initially felt like what the last sentence in that quote above states. It felt like an unwanted obstacle and struggle, but in the end, this isn't bad for my family right now. I'm going to focus back on the kids, get through this surgery and the healing process for Jax, help them out again at school in the classroom, help Jason out with some big needs for his career and get through the holidays. I'll remain an Independent Contractor and do project-work on the side, and that's all I'm going to put on my expectations for awhile.

Preview to Brady's Halloween costume...

Jax was SO excited about our special lunch before his appointment. He said he's never been inside a McDonald's before. Huh.. he may be right! Brady and I always went out to lunches while Jax was in feeding therapy through the years... this kid has only had drive thru treats!

The culprit...

Brady is such a hipster in contrast to Jax. Jax prefers all-american sports theme and Brady just wants to look like he came out of Colorado. I did not pick or put his hat on - that's all him. I'm waiting for him to ask for real guitar lessons any day now.

Great Grandma's 79th birthday celebration.

The boys with cousin Ellie. She just turned 4 and is catching up to Jax!

He can still ride a mean Big Wheel like nobody's business...

Jax was my pumpkin-picking buddy after church.

Brady busting out a book assignment after school.

We love to dive into pie after dinner most nights now that it's PIE season!

Wouldn't ya know it... Jax has another STY in his eye! Let's try to stay away from Cellulitis this time buddy! (sigh)


Stacie said...

Many hugs to you. What a tough few weeks you've had! Sending good thoughts to Jaxon (and you all) for his surgery.

ferfischer said...

You know - I saw your Colorado comment, and I was like what? What are you talking about - that looks normal to me! And then I realized I am from Colorado. haha. :) Your boys look like they are doing awesome. I don't comment much but I read always!