Today was day 1/3 of appointments for Landry at Cincinnati Children’s and it went as smoothly as it could. We are so thankful for that! 

Our day started early with a chest CT scan, which Landry handled better than I could have expected. She got by with a nasal sedative, lots of comfort items, and me basically going through the tube with her 😂, instead of general anesthesia, which surprised everyone! 

The downfall to these appointment dates for Landry was that Chandler has had a long-awaited specialty appointment that, naturally, was also scheduled for today. Appointment timing and the time change worked out that I could be at her appointment virtually in a private room reserved through hospital concierge. I was so grateful to be with both girls as best I could. Chandler continues to amaze me with her bravery through all of this and showed me today what a great advocate she is for her own healthcare! I was incredibly proud.

Landry saw the aerodigestive dietitian after lunch and we wrapped up at the hospital about 2:30. Tomorrow and Thursday are much more full so we took advantage of the down time and took her to the aquarium. She loved it! Sometimes it’s hard to “treat” her after appointments so the aquarium was very special. 

My mom is here with us in Cincy. Chandler is at home between Pete, my dad, and friends. She has so many people who will love on her well while I’m gone, but we miss her already. 

Tomorrow will be Landry’s toughest day of the three. We check in at 10:30 CST for a “triple scope” with her aerodigestive team. Pulm, GI, and ENT will all scope their respective systems one after another to avoid multiple sedations. I’ll meet with the three doctors after the scope and then we are free for Landry to rest and recover. We’ll be back at the hotel tomorrow night if all goes as planned, which we expect it to. 

Thursday will be long, but mostly non-invasive. We have a FEES swallow study with ENT. A small scope is inserted through her nose (no pain at all, just uncomfortable) and watches her swallow from above. The other swallow study option is done under x-ray and requires drinking barium. We’ve had enough failed attempts with that that we don’t even try it any more. The FEES study lets her drink her normal formula (as long as she’s willing) with a few drops of tasteless dye mixed in. After that we’ll be in the endocrinology and neurology clinics as well. 

I’m so thankful for all the prayers for us today and I can’t tell you how much the encouraging comments and texts help me get through the long days and short nights. We are blessed! 

- Lindsay