A child waves at a school-bus full of kids

Off to Kindergarten

We are officially one month into kindergarten, and so far, we have had only positive experiences in Margo’s transition. She went from pre-K on a Friday to kindergarten on a Monday, so we breathed a sigh of relief that she handled it so well.

One of the things Margo was most excited about was riding the bus, which worked very well for our work schedules as well. It was definitely a big moment seeing our little girl walk up the steps to the school bus and take her seat.

Medication

The nurse reports that Margo is in and out within a 30 seconds to get her medicine for lunch and snacks. She comes in, says hello, swallows her pills, and leaves. Margo has been swallowing her pills since she was about 18 months old, and that never fails to impress most people upon seeing it. Her teacher walks her to the nurse’s office every day and I’m always interested to hear what they discuss along the way. However, being a typical kid, she doesn’t share many details!

Food

Another decision we allow Margo to make is to buy lunch every day. This was important to her, and honestly, it was one less thing for us to do at home. We look at the menu every week and explain to Margo her options. While we like this because it gives her a sense of independence and introduces her to new food options, it has turned into an exercise of trust and letting go for us as parents. We ask her what she ate every day, and sometimes she remembers.

Many times, though, she skips over details that give us a good picture of her calorie intake. This will be something we continue to monitor, particularly at her clinic appointments when checking her current weight. At this point, we aren’t concerned. Every morning she eats a big breakfast at home, a second free breakfast at school, and a high-fat, high-protein snack in the afternoon. If she gets hungry during the day outside of this, she has additional high-fat snacks at the nurse’s office.

After-school care

Because my husband and I both work, Margo attends a local after-school care program. She’s been in it now for over a month and we feel perfectly comfortable now, but I’ll be honest — we were apprehensive at first, mainly because it was a new experience for us.

However, once I made an appointment to meet with the director of the program and we got through the first couple of days without issue, I began to relax. At the meeting, I gave the director copies of Margo’s Individualized Health Plan (IHP) from school, as well as her enzymes. For informational purposes, I also provided her with websites from the Cystic Fibrosis Foundation website, detailing what CF is.

Margo gets a snack at after-school care and she gets her pills before from one of the staff members. The only hiccup so far was that she accidentally mixed up her school snack and her after-care snack. School allows nuts, while after-care is nut free, so she wasn’t allowed to eat her snack that day. Luckily, she’s only there for an hour and I gave her a snack at pick-up.

Childhood milestones

Many people asked if I was sad if Margo started kindergarten, or if I cried when she got on the bus. And while I understand that sentiment, it’s not one I typically have with her. Instead, I tend to feel an overwhelming sense of pride and relief and excitement she’s grown up so much and is at this huge pivotal milestone. I try not to focus on the negative aspects of cystic fibrosis, but it’s not lost on me that kindergarten used to be a measuring stick for many CF parents after being told that their child might not live to see it.

I feel such overwhelming gratitude that we can send her to school like any other child, and my mind is at ease knowing she is being cared for.

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