My mom and I left this afternoon for another week at Cincinnati Children’s with Landry. This trip is more neuro-focused as we still don’t have any concrete answers for what happened a few weeks ago to cause her inpatient stay. Her neurologist had already placed the order for an updated brain MRI prior to her admission so it made sense to schedule it as soon as we started having concerns and then I built the trip around that.

Our schedule is not quite as full this time, which will hopefully be nice from an exhaustion standpoint.

Monday we have an Upper GI fluoroscopy study to confirm the current placement of Landry’s feeding tube. She will be having surgery at some point to revise the placement, which her new GI doctor believes could be causing her GI bleeding when she has episodes of uncontrollable vomiting. It would be a fairly simple fix if that’s the case, but of course, we won’t know until we try. 

Tuesday is the brain MRI under general anesthesia, which will take the whole afternoon by the time it’s all done and she’s awake. 

Wednesday we repeat an EEG because they want to get and read their own here, especially after her continuous EEG in the hospital left us with questions. I don’t feel particularly suspicious of seizures at this point since she has mostly returned to baseline, but they wouldn’t be uncommon with her CHAMP1 diagnosis either. 

Thursday we meet with the neurologist and then will drive home. We won’t quite make it in time for the bus, but Chandler knows I’ll be home for supper and bedtime and she’s very happy about that! 

Chandler is looking forward to spending a few nights at a friend’s house and some school night sleepovers that wouldn’t typically be allowed since Pete is busy in the field. I will always say that having my heart in two places between the girls is the hardest part of this medical journey with Landry, but I’m so grateful for wonderful friends that love her like their own and make things so fun for her while I’m gone. 

It was really a pretty quiet and, dare I say, normal few weeks for us since our last trip and Landry’s hospital discharge, which I’m always hesitant to say out loud because it seems that’s the exact moment things become very un-quiet. 😂 But I can absolutely now see the appeal in consolidating appointments into big trips like this instead of spreading it out. It makes for a long and exhausting week, but it definitely makes the time in between trips seem much more calm. A couple times lately I’ve been sure there were appointments I was missing in my calendar, but no one’s called me about them yet so I must be good! 😂

I will try to update as the week goes on and Landry comes out of anesthesia well after her MRI. Thank you, in advance, for praying for her, but also for Chandler’s emotions while I’m gone. She does so well, but it’s not easy for her and that’s the worst part for me. 

Happy Sunday, 
Lindsay