It feels like the theme of our month has been “two steps forward, one step back.” We recently increased Frankie’s total volume of feeds, and unfortunately, his body reacted with ostomy output that was just too high for the enteral feeds to be beneficial. We’ve had to back off the volume again.
To make things more challenging, the hospital recently changed their charting system, which has made communication with Frankie’s providers incredibly difficult. We’re doing our best to troubleshoot outpatient with what feels like very little support, and I’m counting down the days until his clinic visit in November to sort some of these issues out in person.
At our last meeting, Frankie’s surgeon mentioned that taking down his stoma could actually make things worse. That comment has been sitting heavy in my mind, adding another layer of uncertainty about whether his team in Salt Lake can fully manage such a complex case.
Despite those challenges, Frankie has been working so hard in his therapies and is so close to sitting independently! He’s also become quite the chatterbox, talking up a storm over his trach. Some evenings he gets so loud, I think he’ll wake up Henry down the hall!
Our nursing schedule is now fully staffed, and we generally have 24/7 coverage. That stability has been a huge relief and has allowed my mom to finally get some well-deserved rest, especially during evenings and weekends when I’m home from work.
Henry is right on the edge of walking! He’s been standing independently for longer stretches and has started to “march” in place a bit. He gets his ankle braces on Monday, and I think once they’re on, he’s going to take off running. We are so grateful that a local foundation covered the portion of the brace cost that insurance didn’t.
Frankie also tried on glasses for the first time this week! He has moderate nearsightedness and strabismus, so the glasses will help him focus and bring his eyes back together. We were incredibly fortunate that a fund through the ophthalmologist’s office covered our portion of the cost.
Thank you to everyone who has sent supplies from Frankie’s wishlist recently. Your kindness helped us restock for cold and flu season, and we’ve been especially grateful for the laundry soap and sanitizer. I’m a little behind on thank-you cards, but they are coming! Please know how much your thoughtfulness means to us.
Several people have asked what the boys would enjoy this Christmas, so I’ve put together some ideas for each of them.
Frankie’s Wishlist: https://www.amazon.com/registries/gl/guest-view/37EU6NUAN4NZP?ref_=cm_sw_r_cp_ud_ggr-subnav-share_46Q95SVX617RYKJKN7ZH
- Pop tubes
- Good Dog Carl books
- Texture books and toys with interesting textures
- Cuddly stuffed animals that play music. He loves toys/stuffies with lights and/or music.
- Grasp toys
- Recordable communication buttons
- Twin-size sheet sets (his have worn out with all the ostomy leaks and washing)
- Teether straws
- Tonies Characters: Buzz Lightyear, Winnie the Pooh, Elmo, Maestro, Beethoven
- 24-month onesies or 2T/3T ones (Target and JC Penney carry them)
- 4T short-sleeve t-shirts (larger size because they need to be long to cover his ostomy bag)
- 24-month jogger pants with very stretchy waist or knit overalls with jogger pant leg
- The boy loves hats (2T or adjustable)
Henry’s Wishlist: https://www.amazon.com/registries/gl/guest-view/35EQSG8E3P96?ref_=cm_sw_r_cp_ud_ggr-subnav-share_9QYRJ3JSW2WM55DTQEDT
- Touch-and-feel and Poke-a-Dot books
- Fisher Price Learn DJ Table or toddler musical instruments (he loves tambourines, bells, drums)
- Size 5 Billy Footwear shoes (zip-top for his braces) — Target gift cards work best so we can try on
- Tonies Characters: Woody, Favorite Children’s Songs (Sing-Along, Playtime & Action Songs), Cookie Monster
- Toddler art supplies (egg crayons, Crayola touch lights, Crayola fingerpaint box)
- Anything Thomas the Tank Engine or Toy Story’s Woody
- Pikler climbing set
- Toys that promote walking
- Large toddler bibs, sippy cups, and pouch tops
- Little People sets (he loves the little figures!)
It’s been a season full of small victories, setbacks, and gratitude. Each new challenge feels a little more manageable when we pause to look back at how far both boys have come. We continue to be so thankful for everyone who follows along, sends words of encouragement, or lifts us up in small ways we never take for granted. As always, thank you for being part of our journey and for loving our boys as they grow, learn, and thrive in their own beautiful ways.
Love,
Amanda & The Boys
