Is it October yet?

What a summer it has been! I wish I could say it was all perfect but the past 5 days have been anything but.

Wednesday when I got home from work I noticed Ben was breathing “weird”. He acted fine but said “it’s kinda hard to breath”. Ben insisted on playing outside after dinner. Long story short, his breathing got worse and I ended up taking him to the ER. It’s kind of hard to describe how he was breathing but it’s sort of labored/sighing, it sounds like he’s taking a really deep breath. We were on our way home a few hours later with all good news, clear X-ray, clear

lungs… nothing to worry about right? Wrong.

We left the hospital and Ben was still having to stop every few feet to catch his breath.

He went to sleep and woke up in the morning breathing just fine. He went to his Dads for the day and after just a few hours the labored breathing started again. We took him to Texas Children’s and back (twice), from there he was admitted to the pulmonary floor. Initial bloodwork showed that he had high CO2 in his blood, and a high PH. The first pulmonologist said that his lungs appeared to be overinflated in the X-ray. Over those two days Ben did two different lung function/mechanic test, all results similar to his last test done in March (good news). We saw probably 6 different pulmonologist or residents, however none of them specialize in neuromuscular disease. And guess what? Bennett can’t get in to an appointment with his pulmonologist until October. And guess what else? He was sent home Friday afternoon still breathing like this.

It has been a veryyyy long 5 days. It doesn’t seem to bother him, but sometimes he does tell me it’s hard to breathe (a few times a day). We’re trying to keep things as normal and usual as possible, but it is exhausting. It is exhausting watching your child struggle, but not near as much as it is for him to deal with.

One awesome thing that happened that I just have to share. Ben was able to get a “pass” to see Dude Perfect while at TCH. They came to the hospital before their show at the Toyota Center, did some Q&As, pictures, water bottle flipping and trick shots!

We (Bryan, Ben and I) appreciate everyone’s sweet messages and phone calls. Ben is the greatest, funniest 7 year old on earth, we are lucky to have him 😇 Please continue to pray for Bennett, please pray for him to have a great school year despite this and for his doctor to find an answer.

Much love ❤️