Posted: 05-10-2025
We were thankful for the quiet night last night and the slow, easy Saturday morning start that it allowed. Today gave us a much-needed breath, one we didn’t realize we were holding.
We’re officially done with this current round of IVIG. We’ll also start tapering her steroids again on the 14th. Eventually, the hope is to move her to an oral steroid, but for now, we’re easing into things, not wanting to upset her belly too soon.
Some of the other meds—Levocarnitine, antacids, Tylenol—are making the transition to oral as well. Small adjustments that feel like forward motion. Because steroids can leave the immune system a little vulnerable, she’s also now getting Bactrim twice a week to help prevent things like PJP pneumonia. Just one of those proactive measures that helps keep things steady. We need steady.
Dallas is also tolerating her feeds at a slightly faster rate. We’re increasing by 5ml/hr every 6 to 8 hours, slowly stair-stepping our way to her goal. If all continues well, we should reach that by tomorrow morning. Some of the reflux she’s been dealing with may have been tied to the feed progression and her gut just waking back up. We’re hopeful that some of that appears to be smoothing out now.
Today wasn’t just about the medical to-dos, though. We got some life things checked off too. Hair washed, teeth brushed, face and ears cleaned—what we’re calling a mini spa morning at the hospital. It brought some comfort and a fresh start to the day, which is always welcome.
But the real highlight? We got the green light to take Dallas outside.
We spent nearly an hour soaking in the sunshine and fresh air, surrounded by the courtyard’s birdsong. It was her first time outdoors in over a week, and I think it was well-received by all of us. It was more than a change of scenery—it was a lift to the spirit, a kind of peace that only comes from being under an open sky and out of those four hospital walls.
We’re hoping for a repeat tomorrow. A calm, quiet Sunday would be the best kind of Mother’s Day gift for Heather—a gentle, healing day with her girl!
“Some old-fashioned things like fresh air and sunshine are hard to beat.” — Laura Ingalls Wilder
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Such beautiful progress. I love that she could go outside. I hope soon, you and Heather can breathe a little easier. I will continue to pray. This road is very long and you guys have more stamina than anyone I’ve ever seen. Your smiles are the best medicine for little Dallas ! I will pray for her Healing and your strength !!! Love you both
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Sounds like your little one is moving forward on her journey to healing…go Dallas go, so happy sunshine and songbirds greeted you with fresh air. Happy mothers day Heather, with the best gift, Dallas healing 💕…May she continue overcoming her health issues, our love gentle hugs and kisses continue with our prayers for her journey to be over and go 🏡 home.with love ❤️ aunt grace uncle Alan Nicole and Rose 🌹.
Such a wonderful update! So many positive things you all shared today! Wishing you all n̈another fantastic day tomorrow!
Happy Mothers Day Heather!
Celebrate every win! Rest and be ready for more. Happy Mothers Day Heather and all the Moms in your life Brett and Heather!
Hugs
Glad you all got to go outside for awhile and get some fresh air! I know Dallas enjoyed the change🤗 I love reading about her progress!! Sending love,hugs and lots of prayers💝
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What a beautiful picture! Sunshine and fresh air always lift the spirits and gives peace to the soul. Praying for a beautiful Mother’s Day for Heather and rest for all!
Yay for some fresh air, and a spa day!! That’s great news. Happy Mothers Day to Heather, one of the best around!! xoxo my friend!
Keeping you all in our prayers for more milestones moving forward. Happy Mothers Day to you Heather, may today bring some peace and love to you all.
Wonderful news on all fronts. Especially SUNSHINE.
Cant wait to hear her reaction to her birthday videos. I hope you are getting alot. Happy mothers day Heather. I hope you enjoy a much deserved special day. Love You Mean It!
It is hard to beat fresh and sunshine. Or just fresh air outside, when it is raining. Sounds like the small steps are going in the right direction for sure. I wish for you all a happy Mother’s Day. You both deserve the best.