Adapting to a new routine is made harder by regular hospital visits
This back-to-school season has been especially tough for my son, Finley
Our family has been extremely busy lately. The beginning of the school year is always an exciting yet exhausting time as we settle back into our fall routine. While this season brings familiar changes, it often wipes out my boys in ways I don’t always anticipate. It has been particularly challenging for my youngest son, Finley, who was born with Alagille syndrome, as he has faced more changes than in previous years.
Finley started pre-K at the beginning of September and has been having a blast. He loves talking about the songs, science projects, and time with his friends. But I can tell he’s still adjusting to the classroom routine.
He has fallen asleep on the car ride home more than once, which is not the norm for him. And although little has changed in our routine at home, he’s been going to bed at a reasonable time and with minimal difficulty. As I’ve shared before, Finley has often struggled with bedtime and sleep, so this has been a positive development.
The school routine has left Finley more tired than usual, even though he’s sleeping better at night. Finley has always been able to throw a tantrum, and we’ve had to help him navigate many of those this month.
Navigating more appointments than usual
One reason I believe he’s struggling to regulate his emotions is the number of doctor appointments we’ve had lately. Because of the hematoma that developed following an unrelated, scheduled surgery, we’ve been visiting the hospital weekly to follow up with various specialists.
Finley loves to color on the whiteboards in the doctor’s office. (Photo by Jay Sandstrom)
Thankfully, every visit so far has been positive. Finley is doing great and remains unaffected by the small fracture in his skull. He doesn’t have bone density issues, and his MRI scans looked normal. He will soon follow up with his gastroenterology team, and we have our regular visits with his cardiologist and eye doctor scheduled for later this fall. The appointments have stacked up.
Finley does extremely well at the children’s hospital, but I know these visits are not his favorite. Even though he’s only 4, I’m sure he can sense that something is going on.
I am trying to give him extra grace when he’s having a hard time. I’ll make some concessions in moments of need, but still try to enforce boundaries. It is quite the balancing act, but I am happy with this approach. Despite the challenges, I’m seeing improvements in Finley’s behavior and feel like we’re moving away from some of his earlier behavioral difficulties.
His sleep has been a huge step forward, with him now going to bed at about 8:30 p.m. instead of 10:30 or 11 p.m. This has been a boost for everyone in the house.
Changes in routine become more established over time. The extra doctor visits have made this season even harder, but I remind myself that it’s temporary. As the dust settles, so will Finley.
Note: Liver Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Liver Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to liver disease.
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