Bump in the road, Blessing or Both

In a surprise turn of events, we found out in late July that Jenevieve would need a G-tube.

This was something we had talked about early on in her cerebral palsy diagnosis, but over the years, we had been able to keep her weight up. She eats a ton of real food, and I was so proud that we had been able to avoid a G-tube for the past five years.

But as I continue to learn more about her brain injury, I’m realizing just how hard her growing body has to work to keep up. With her mixed tone, her energy expenditure is incredibly high, and sometimes the calories she’s able to consume simply aren’t enough to keep up with what her body is burning.

At her most recent GI appointment, we were told that she has now fallen off the growth charts and has lost too much weight. In six months, she had only gained 100 grams.

My mama heart hurts for yet another thing our girl has to go through.

I was so excited and filled with pride that we had avoided the need for a G-tube. And now, five years later, we are just hours away from getting one.

Full transparency: my anxiety is through the roof. It feels like another need for our girl, another financial blow for our family, and another mountain that we will once again figure out how to climb because we will MAKE it happen for her.

It all feels like A LOT.

Sometimes I wish I could take all the hard things from her. I wish I could give her a “normal” life and spare her from all of this.

But even in the fear and sadness, there is GOOD.

A G-tube may allow us to qualify for respite care. We’ll be able to give her medications through her tube. She may have more energy to make it through therapy sessions. And the daily stress of trying to get enough calories into her body can finally be lifted.

So many tube mamas have told me that getting their child’s tube ended up being one of the biggest blessings they never knew they needed. I’m holding onto that.

We have BIG goals for our girl; stem cell therapy, intensives, and so much more. This G-tube is not the end of the road. It’s another tool to help give her body what it needs so she can keep fighting, growing, learning, and reaching those goals.

For now, I’m asking for prayers.

Please pray for Jenevieve, for her doctors and medical team, and for all of our hearts and minds as we walk through this next step. Pray for favor in all things medical and financial. Pray that this tube truly becomes a blessing and gives our girl more strength and energy.

And if you feel led, please share our page, pray for us, and consider giving toward Jenevieve’s journey.

We are so incredibly grateful for every person who has prayed, shared, donated, encouraged us, and loved our girl along the way.

Thank you for being part of her story.